me in all my manlyness in October when i was on the SCD diet, 2 months before surgery
Intro:
Here’s a short summary of my life the last month after getting my colon removed due to a nasty case of UC. Hope you enjoy!
The Update After Colon Removal:
Hello, my name is Blake, 30 years old, father, husband, diagnosed with ulcerative colitis in February of 2011, I live in Missouri, originally from Illinois. I had 2 flares in 2011 and they were both really nasty, I think I had 2 good months. I tried all kinds of drugs, diets, lifestyle changes, but I was nothing helped, I was crapping blood 15-25 times a day. I was missing work, always on the toilet, pooping my pants, having bloody farts, laying around on the couch when I wanted to be playing with my son and depressed and miserable. It came down to basically having to choose to get my colon removed, or being forced to have it removed later down the road due to an emergency situation, so I chose to get it removed while I was still in pretty good health. I chose to do the 3 step J Pouch surgery, this was step one. Here’s my update on what life is like after colon surgery and being introduced to an ostomy bag.
I had my colon removed on December 6th, 2011. My doctor originally wanted to admit me to the hospital for an emergency colon removal after Remicade did not work for me. I choose not to do this because I would’ve been in the hospital during Thanksgiving and I knew I wasn’t going to die waiting another week, so we did it December 6th. The day of the surgery I was pretty scared, waiting again in a damn hospital waiting room to get this thing over with. I remember the biggest thought on my mind was food. They make you starve yourself, much like getting a
me showing off my new friend
colonoscopy. Once I finally entered the prep stage, a stoma nurse came in and measured me for where I would like my stoma. A stoma is basically your small intestine, and when you get your colon removed, you’re small intestine is poked through your abdomen so you can get rid of waste through an ostomy bag. Once that was done, they started giving me the good stuff and I was asleep in no time.
When I woke, I remember all these ER nurses surrounding me and as I came to I remember feeling really loopy and in a great mood. I said to the nurses, “stop staring at my penis” as a joke and when they started laughing, I started laughing. Boy! That was a mistake! That was the first time I realized that you should not laugh moments after having your bowels sliced open. They continued to make jokes and I told them to stop making me laugh cause it hurt too bad.
The first time I saw my stoma, I was like anyone else would be, horrified, disgusted and a little sad. It reminded me of the movie Alien’s when the alien pops out of that dudes stomach. Or was it a chick? Anyway, that was a little hard to deal with. And I had a catheter in my pee pee, a drainage thing up my ass, and another drainage tube coming out of my side, oxygen in my nose, plus my IV. I did have access to a button that gave me something like morphine, if you press it too many times, it makes you itch really bad. So I only used it when I needed.
They encourage you to walk so I started taking walks the day after surgery. It’s really hard to get out of bed after this surgery, but once you’re up, it’s not too bad. I immediately felt relief, even though I was in a lot of pain, that I did not have to take a crap. I thought now this is what life is like! I had forgotten.
They wouldn’t allow me to eat solid foods for my first couple meals after surgery, so broth and jello and juice was what I ate. The first solid meal I had was a cheeseburger (with mayo and ketchup and a gluten free bun), fries and a sprite. Then I grubbed on some ice cream. Yep, hadn’t had dairy in a long time before my surgery so that was awesome. I couldn’t believe I was getting to eat this and guess
picture of my stoma and incisions when I was without the bag - this was 11 days after surgery
what, no bloody poop afterwards! That was the best part.
I stayed in the hospital 3 days after surgery, which is the least amount of time they will allow someone after colon removal to stay for so I was a rockstar.
The ride home was great cause I didn’t have to worry about a bathroom. You’re not supposed to drive for two weeks after surgery. I guess because if you get into an accident, you’re screwed because the seat belt would probably rip you open. Well, I drove a couple days after I got out of the hospital, no problems. My doctor also told me not to lift anything over 25 lbs for the next six weeks. So I went to the gym 7 days after my surgery. I lifted a few light weights and walked a while on the treadmill. I am not suggesting to do what I did at all, you could risk getting a hernia pretty easily if you aren’t careful. I’m just letting you know it wasn’t that bad.
I have been sitting arond a lot the last month, playing lots of video games and watching a ton of tv, it’s been great. But I have been pretty active the last 2 and a half weeks. I will go to the gym about every other day, taking walks around the neighborhood, going grocery shopping and playing with my son. I shouldn’t be writing this, but i even knocked boots with my wife about a week after surgery! Still got it!
my dad, my son and I at the hospital two days after surgery
I have felt depressed at times when I let myself think too much, but I think that’s mainly because I haven’t been working and keeping a daily routine. I go to bed around 3 every night and wake up around 8, so I haven’t been giving myself enough sleep which is my bad.
Living with a bag isn’t the greatest, but it’s a hell of a lot better than my life with UC.
I feel free again and every day gets a little better. I do have to empty my bag quite a lot, probably 6-10 times a day, but that’s because I empty it even when there isn’t that much in there. That will probably drop down once I go back to work Monday. It’s pretty easy to conceal the bag with a long shirt. I also where an ace bandage around my abdomen when I go to the gym or out anywhere and have ordered a belt to help conceal it.
Anyway, I didn’t want to make this too long, so if you have any questions, fire away. I’m open to anything and am very honest and nothing groses me out. If you ever have to decide if this is the way to go for you, I endorse it so far. I have 2 more surgeries to go before I’m done, but I am very pleased with step one. Thanks for reading!
Blake
submitted in the Colitis Venting Area
Medications and Treatments I tried for treating my Colitis:
Sulfasizine
Asacol
Asacol HD
Lialda
Prednisone (and lot’s of it)
AMP Floracel
Immodium
Lomotil
SCD diet (about a month and a half)
along with a gluten free diet which I still do since February
…and a bunch other crap I can’t think of right now.
Look where it got me… Colonless… but happy without a colon!
My name is Blake, I’m 32 years old. I have a 4 year old son and a beautiful wife. I used to suffer from UC until I had surgery. I’m celebrating 1 year and 1 day with a J Pouch today (8/23/13).
my brother in law, 62, just had his colon and anus removed due to UC and a highly contagious infection. says we can no longer call him an asshole, but he really is so depressed and embarassed. how can we comfort and reassure him?
Ha ha, good joke Carol, I’ll have to use that one. How long ago did he have his surgery? It’s probably just going to take some time for him to come around, maybe get used to it. There is really nothing to be embarrassed about, it’s not like he wanted that to happen to him, but I can definately understand. I’ve only had the bag for 5 weeks (today actually) and I think I’m pretty used to it already. I’m pretty honest with people and don’t really hide it and I think that helps. I actually told a few people I’ve never met about my story since I got the surgery and get nothing but compassion and understanding… so far. Tell him to join this site, that would be a good first step.
I think you just made my day. I like listening to your words of encouragement. I am taking Imuran and don’t think it is working and next will be Remicade. Can you tell me what is done and what are the side effects from this mess? I am not in a good mood today and need someone to talk to.
Blake do you mind passing along your email, I just had my first surgery a few days ago and I’m having a rough go with it. Would love to talk with someone with similar interest and problems.
Hi how are you? Hope all is well.. I’m one of the 8 that had that surgery and it went wrong but the second person who surgery thru it all
I’m hoping this site is still active because I’m concerned about my wee sister who had a colonectomy almost 3 weeks ago and still in hospital due to complications. 2 days post op no need for stoma but rushed in to surgery for complications. Internal leakage repair and stoma built. Continues w/acute pain,no solid food, only sips liquid.very weak…asist of 2 from bed to chair, contd IV fluid/antibiotic fevers AND has a huge bag on floor to collect fecal waste? Is much worse than before op. Is 5’10” and was < 90 pound before op. Any advise?
I am suppose to have colon surgery in one week. When they say whole colon they do not take the desendinga and assending , sigmiod ans such do they
-I have to say, i’m 18 years od and after a colonoscopy that was done monday, i ‘ve been told i have ulcerative colitis. After reading everyone’s stories i can’t lie, i’ve become depressed or the past few days where i’m just scared. I didn’t know it would take such a toll on me the way it is, i’ve just been crying because i feel like my only hope later on is going to be having a surgery. And i’m so inspired by your story though , i really am. But i’m jsut so sad :(. Is there any advice that you can give me ? MY biggest issue is bleeding from the rectum . IDK how i got and developed this. I don’t have an issue with severe diarreah, but i noticedm my BIGGEST issue is bleeding from the rectum to the point where i’m anemic. And in times of stress, it gets horrible.My doc. placed me enemas EVERY night before bed which is a bit much and i think that’s why im so depressed right now. Will this ever end? WHen they told me “There’s no cure, you’ll be sufering with this for the rest o your life” , It’s almost like hearing “well, you’re going to die” . They didn’t really give me much info about it so i had no choice but to use Google, which added on to the depression. IS there a particular diet i can get on? is the surgery the only way? I’m just so scared. They found ulcers in my colon and rectum. Psuedoplyps in the “sigmoidcolon”?? idk what that is. But i’ve just been glued to the internet which i don’t think is a good idea. I just really need to talk to someone who is dealing with what i’m dealing with. Were you ever at this state where you were depressed?Thank you for reading this, and i’m so sorry about the messy grammar, i’m just in such a hurry to hear from someone who is in the position of great advice. Once again i admire your story and i pray and wish you the best !
Hi Kiana,
Sorry to hear about your UC diagnosis. I’m 29, diagnosed with UC in Jan. 2012, and I had surgery in March 2013, so right now I have an ileostomy and am wearing a bag, but can have the J-pouch surgery done if I choose to go that route. For me, surgery has turned out to be great for me, but it’s a very personal decision for each person and in my experience, UC can affect everyone very differently – some people get much better from something simple like changing their diet or taking a probiotic, etc. and in other people,like me, the UC is bad enough to require surgery shortly after diagnosis. But let me offer a couple of suggestions: 1) I think lots of people can feel kind of depressed about having UC, so you’re definitely not alone. I know that I felt that way often because I felt bad so often and having UC made it hard for me to do a lot of the things that I used to do. But if you’re feeling depressed sometimes, I would suggest trying to do things that you enjoy often because I think that will help you feel less depressed. 2) Try your best to eat healthy, stay hydrated, get enough sleep, etc. because doing those things will help you not feel as bad when the UC is active and will help to keep the rest of your body healthy while the UC is active.
Best wishes and hopefully you find relief soon.
I hope all went well with your UC. I have UC for 15years and today is the real first first day I really gave it a life choice. I just dealt with the disease the pain and diarrhea headaches depression and just figured it was going to be a part of my life I just never thought about surgery. Now today I’m in the hospital with severe ulcer colitisand trying to figure out when and what type of surgery now I’m 54 to grown children. If I don’t have surgery I can develop the big C . Now I’m in a dog called trying to figure out what’s the right thing to do. Tell me how did things work out for you
Hey Kiana,
Sorry you’re going through this. I’m pretty sure every single person who has bled out their butt from UC has gotten a little depressed from it, so you’re definately not alone here. A couple thing to think about, just because you have UC, doesnt mean your life is over. Lots of people get to remission. I read a lot of stories where people find remission, I wasnt so lucky, but in a way I was lucky because UC was so bad for me I was pretty much forced into surgery. Now I dont have to worry about it anymore because Im cured. It’s definately not an easy disease to deal with. I was living in the bathroom, bleeding, shitting my pants, scared to do anything. But not every case is so severe. There is the SCD diet you could try that works for a lot of people on this site. There is a ton of info about it. I tried it for a month and a half, no luck, but its worth trying. Also reading a lot about fecal transplants on here as of late which sound nasty, but if it works than go for it. There really is no true cure for UC except for the removal of the colon. Sounds severe, but Ive been through it and would do it again if I had to do it all over again. I feel great, I have very little to complain about. Its not perfect, but a hell of a lot better than UC. Its very hard not to stay on the internet for hours researching this disease, but you’re right, you’re not doing yourself any good by doing that. I strongly believe stress makes this disease worse and a lot of the stuff I read would stress me out. Good luck to you, you have a lot of good info here and plenty of people to talk to. Take care!
Hi , my daughter is ready for stage 3 of the j pouch but is loosing stool from her bottom already Eben thought her bag is still in place is this normal do you know x regards Cheryl
Good Morning Kiana, I am sorry to hear that you were diagnosed. I am a mother of a daughter with Crohns/UC. I have a daughter who was diagnosed with Crohns/UC when she was 5 years old. She was bleeding heavily from her rectum, and her general pediatrician kept telling me she was constipated. I told them that she was not, that she had lots of diarharea. Well after 2 months of me screaming at the doctors they finally decided to do a colonoscopy on her (May 2005) and that was when she was diagnosed. She was immediately put on steroids and lots of other medicines. At the tender age of 5 she did not know what was going on. I cried many of nights wondering what I did wrong and how could I stop all this for her. But it was not until I came to the realization that this would be with her for the rest of her life that I did not become a better parent for her. The parent that she need me to be. She began a treatment called remicade that she truly start to feel better that year. That required her to go to the hospital on monthly visit to receive the treatment. Besides being drug dependent she did whole lot better. We did the different diets and different probiotics. She was able to resume kid’s activities. But the symptoms never went totally away. Her body started to become immune to the medicines and symptoms started to creep back up in 2010 when she was 10 years old. After having horrible bouts of pain and blood we were slowly losing her (emotionally and her quality of life) in 2011 we made the decision to remove her colon. That is the hardest decision me and my husband had to make. I questioned myself everyday. Making a decision for our 12 year old killed me inside because it was not my body. But she was still too young to understand what would happened if she did not remove it. Well in Sept 15, 2011 she had the colon removed. She hated me. She had an ileostomy. The hated me worse then. It was not until she realized that living with the bag was not as bad as the blood in the toilet, the pain, the smell of the poop, her life before the bag. She finally came around. In July 12, 2012 she had the J-pouch formed, but she still had her ileostomy. In December 15, 2012, she finally had the last procedure done. She was free from bags and all. Now at the age of 14 she lives a normal life. The main thing that she lives with is having to stay hydrated and using the bathroom 6-8 times per day. That is normal for her. She is living. She goes out with her friends, she takes swimming lessons, she is a 14 year old young teenager. I write to you not as a person with the disease, but as someone who has been to every doctors appt, every treatment, every hospital stay, I kept her medical records for her so when she gets older she can know how everything about herself. It has been a struggles and accidents. But I tell you the easiest time in dealing with everything was when she was positive about what was going on. When she would not let it beat her. When SHE wanted to keep on living. There are a lot of people dealing with UC, reach out to your family, friends or even me because you are not alone. It breaks my heart to know that this is stressing you out because I have been there with my daughter. Please do not let this depress you. You have people out here that are here for you. You are only 18 years old and you have your entire life ahead of you. My daughter is one of my heroes she has the strength and fortitude to deal with this everyday and continue on. If you ever need a someone to talk to that can understand what is happening please let me know. I may not be able to say I have the disease, but I can certainly understand what you are facing. The disease does not define who you are.
Wonderful story Brenda, you are an awesome mother! Very glad to hear your daughter is enjoying life again, she must be very brave and super tough.
Hi, I have an 8 year old boy just diagnosed with UC. I am trying to reach Brenda, as I think her personal experience with her daughter can help me to help my son, and to be strong for him, as I am devastated by this diagnosis. It is heartbreaking.
HI new to this forum I had my colen removed febuary after being told I had severe uc I tried to beat it I was 240lb when I found out I had it I went down to 160lb youll be suprised what the human body can go through thet gave me all those crazy meds asacol hd prednazone mde me crazy when the surgeon came to my room an said I had to have this surgery and that he would help me through it
Hi how are you? I hope all is well, but I would really recommend that you talk to your parents, family, spouse etc….. because for me it went wrong. I was told that everything would be good within 6 weeks and everything went down hill, I ended in the hospital for over 6 month, went In a coma and had to do 7 major surgery and 4 minor, so please check it out. Even though I was promised everything would go great, but instead I got stuck with an ileostomy for the rest of ma life, my husband left me because I got sick, it’s hard to move, using wheelchair n walker. If you have an email like me know and I’ll send u more in $of n pic. Please be careful…. I’m almost 30 yrs old … n it was hard and it’s still hard time
I am 36 yrs old… was diagnosed with FAP gene familial adenomatous polyposis… mutations in the APC gene… My colon looks like cobblestone from A-Z have to drop to 150 lbs then off to have colon removal and bag for 3 months til they can reconnect me…
without the hemorraging at age 34 I would never have been thru tests,colonoscopy’s,genetically tested and would be dead at age 39…some say I am couldn’t do what you are doing…. I say this you never know how strong you are….til strong n grabbing faith and going with it.. I know for me .. I have 3 kids that would love to see them graduate and live a productive life. So for me its 1 surgery at a time…. trying to live :) but with FAP not only a homerun on issues but a grandslam on tumors,cysts,cancers that have to be done…
This isn’t what anyone wants…. just a real life mother of 3 wishing to have my life back… they say normal,healthy besides this gene…. beyond scared, but too stubborn to just quit n let this take my life….
In life kids make the difference in ur attitude to live :)
I can relate to you Blake. I’m only four months since diagnosed but the medications aren’t working and I am mentally and physically worn out. I go 6 times on a good day and 15 on a bad day. At least two times overnight. You know the deal. I’m in New Zealand by the way. I see my specialist this week and she is talking methotrexate or remicade as 6mp not working so far.I’m an RN and going to ask for an appointment with a colo rectal surgeon as I will wear a bag rather than having uc. How are you doing?
hi blake my name is Leroy and I lost my colon oct.14,2013 it wasn’t fun the first year I had trouble with the bag leaking and my skin breaking out had to drive 2 hours just to get to the wound care center but after going to the wound care center and serveral timesof trying different wafers to properly get my stoma pointing in the right direction and not clotting up I am doing just fine I was just like you always in the bathroom loosing a lot of blood at the time I got uc I was 260 lbs I had lost over 100lbs I went to several drs. but they never did much for me so I found one that was 2 hours away from me. and went they finally did the operation I was so weak and out of it the wound care nurse the measure my stomach to make the hole in my stomach for the stoma told me I was near death if had not gotting this done she said I would have died because I went like this four 4 years I had lost so much blood they had to give me blood while I was in the hospital so I say to everyone who has this problem please don’t be stupid like I was get this done be for its to late. even though my love live isn’t to good anymore but at least I am still alive and walking its not that bad wearing a bag friends of mine used to not want nothing to do with me but I told tthem the operation saved my life. I still sometimes get depressed, and say I don’t want to live anymore but I just sit and think about it and tell myself this isn’t what god want me to do so I just keep on living but I have many other health problem I deal with everyday so please anyone that has uc please have the operation before its to late.
I had surgery 2 years ago. Like you I was in the gym, up to 230 lbs. Now I’m wanting to get back in the gym. How are you doing?
Hi All
i had my surgery over 25 yeras ago aftera 2 year battle with UC.I have been in great health ever since scare are a bit bigger than the ones u are left with now but thats ok.My advice do all the doctours ask for first few years then trust your gut feeling LOL.
I take no medication at all and eat and drink what ever i want , i promise there is light at the end of the tunnell.
I’m 19 years old. I had my last surgery to remove the bag about 7 years ago. I’m constantly having accidents at night. Some worse than others depending on what I eat. During the day I’m fine but at night I like sleep through the urge to go. Is this happening to anyone else and if so can you make a suggestion. Thank you
Awesome story! I am so happy you’re doing so much better. I find it a bit crazy that you were able to do so much so soon after the first surgery. I wouldn’t have even thought about any of that stuff so soon. I waited a good month before I started being more active. I hope recovery continues to go well for you. It has been close to 4 months for me since surgery number one and I’m in Colorado snowboarding so it really does get a whole lot better as more time passes by. Good luck and can’t wait to hear how the rest of it goes for you.
Trent
Thanks Trent,
Yeah, like I said, you shouldn’t probably do the stuff I did, I was just kept feeling better and wanted to see what I could do. Definately against doctors orders, but I haven’t messed myself up yet… knock on wood. Hope your enjoying some good snowboarding, that sounds fun as hell! Don’t think I’m ready for that yet.
Did you have open surgery or laproscopicly? How would you rate the pain after? How many times a day are you going now if you have had the bag removed yet?
Hey Waseem,
Wasn’t sure if this question was for Will or I, but my surgery was laproscopic. The nurses always asked me to rate my pain after the surgery, I think the hightest I ever told them was maybe a 6. It does hurt to laugh, cough, sneeze, puke and to try and get up out of bed for a couple weeks after surgery, but you probably won’t have to worry about coughing, sneezing or puking. I haven’t had the bag removed, just got it installed. I’ll be living with it a while.
I heard that after surgery the bag has a bad smell and you can smell it. Do other people smell it as well. That would not be good!!!!????
Just wanted to say thanks for posting! I’m not to the point of surgery yet (I was very very close, but Remicade was able to kick in just in time to keep everything in. But I still have bad days occasionally if I stray from my regimen, and I’m not sure how long it will all last before something happens and I need to walk that path to surgery again. Stories like yours give me hope for the future, whatever it may hold. Thanks again.
Thanks so much for posting this. I am also on Remicade and it is keeping things relatively ok but not in total remission. These stories help take some of the terror of a surgical remedy down a notch.
Thanks Will and OrdinaryWorld,
I really hope Remicade keeps working for you guys. I was really hoping it was going to be my answer, but that didn’t happen. I wanted to write this update to take some of the fear out of the big scary SURGERY. It’s only natural to fear the unknown, but now that I know a bit of the unknown, it’s not scary anymore.
I am on my 6th day of REMECADE. I am hoping for this to work. I will keep you posted. I hope it is not the bag..
Phil
hi blake,
You had an amazing story. I`ve been suffering from uc since 2008, been on sulphasalazine eversince the day after my colonoscopy. Nothing as bad as yours though but your determination and will, do gave me smiles when i’m depressed once in awhile thinking about our condition. I hope you will get better and better in life and health (which obviously you already do). Thanks for the encouraging story Blake.
Ps: message from Singapore :)
Thanks Khidir and Edgar! Khidir, all the way from Singapore. This UC doesn’t have boundaries does it. I hope you staying off the toilet my friend. UC can be depressing, that’s just the nature of this beast, just try to stay positive! Hope you can keep doing good buddy!
Edgar, only a UCer would take 6 to 9 shits a day and think he had a good day! Haha! That does sound like a pretty good day, but it’s definately not by normal standards. I hope you can get back to solid logs soon and your blood dissapears. I’ll definately let you know how the next step goes bro.
Hey Blake, good to hear you’re doing better after your surgery bro. I recently flared up when I decided not to take my Colazal and have a drink of champagne to bring in the new year but I’m back on it and taking a dump 6-9 times a day. Although I’m down to low numbers blood is present again which wasn’t for a while soon after I started on my meds but I guess its the price to pay to feel a lil normal. Hopefully I can stay away from the surgery as long as possible but it’s good to know that you’re endorsing it thus far. I’ll keep reading your posts about your next steps. Good luck and best wishes bro!
-Edgar
Congrats Blake glad to hear you’re doing well and the timing is great for me too. I am having my colon removed on 27 January after a nearly 5 year losing battle with UC and 4 other auto immune diseases.
The really annoying thing is that I have been in remission for about 6 weeks now, but after so many years of struggling with this and the other diseases unlike you who acted quickly I have waited so long hoping that a drug would finally work for me that I am now in such poor health that my surgery has become quite risky because I am dependant on prednisone and am really quite weak.
So now to go into remission so close to surgery is just a slap in the face, I’m trying to stay committed to surgery though especially when I here of success stories like yours.
Unfortunately, I can’t get advice from someone else who has multiple auto immune diseases. So I don’t know if my lupus, rheumatoid arthritis, Berger’s disease and Hashimoto’s disease will improve or still leave me with a really limited life post surgery. But as the UC gives me the most trouble I figure I’ll tackle it first and then deal with the others later if I have to.
Congrats and good luck in the future Michelle
Hi Michelle,
Try fecal transplant! It seems to have worked (so far) for my son (15) though not right away. Good luck to you and God Bless!
LYnn where was the fecal transplant done? My son has UC and is now on Remicade with skin disorders starting. We live in Connecticut. His doctor poo pooed it as usual Any info would be appreciated.
Pam
Hey Michelle,
If I can ask, what was the first autoimmune disease you were diagnosed with? Just wondering. I really hope you have success with your colon removal. That’s good that you’re in remission, but I understand how it can make you second guess yourself. I guess you probably already know that it will come back at some point, so I think you will be happy that you did the surgery. You should eat whatever you want the next few weeks because you will most likely lose all the weight you gained… that’s what I would do. I was steroid dependent also. Hopefully you will be able to stop taking it after the surgery or taper off it. I wish you luck with your surgery and let us know how you feel a while afterwards. Good luck Michelle!
Hi Michelle,
I also have Hashi’s, just had thyroidectomy 10 days ago. Have had UC for approx 14 years. There’s definitely a connection with autoimmune diseases.
Michelle-
I also had my Thyroid out (4/12)…i have UC for 27 years….
Hey Blake
I had my ostomy surgery in Feb 2011 after being hospitalized for 5 weeks with no response to any of the medications, including Remicade. Never suffered before this – so I got hit with a real whammy for the first time. I lived with my ostomy while I considered whether to do the J pouch. I researched, read blogs and communicated with a half dozen people who had the J pouch. I concluded that neither situation is perfect – the J pouch or ostomy. After I healed from the surgery I started exercising again and realized I was fully functional, had no pain and no need for medications. I liked that. The people I spoke to relied on meds, had pouchitis, night time incontinence and still had to seek out bathroom locations when not at home. Despite this, none of them had any regrets as this was still an improvement over their prior suffering. As I didn’t suffer before and wasn’t suffering after I chose to keep the ostomy. I had my rectum removed in October to “seal the deal” (pun fully intended). This seemed the right choice for me and I’ll be back at work next month. I’m not looking back…I’m looking forward to living a full and better balanced life!
Good luck to you
Kim (bbalanzd)
Kim (Bbalanzd),
Sounds like you got hit pretty hard by UC, that’s kind of how I felt. I think that’s awesome that you are staying with your ostomy bag and that thought has rolled around in my head quite a bit too after seeing all the horror stories of the complications with J Pouches. I’m pretty anxious to know how it’s going to treat me too, but all I can do is find out when the time comes. I have to wait a minimum of 3 months for the next surgery, I told my surgeon I may just wait longer and that I may never choose to get another surger, but I still plan on going ahead with it, but it is scary. I don’t want to end up in the same situation 3 surgeries later that I was trying to get out of in the first place, know what I’m saying. I’m glad your happy where you are and I know that if it doesn’t work out for me, it’s not the end of the world, I’ll just go back to my crap bag. Take care Kim!
Blake, god bless you for sharing your story. Did your doctor discuss barnett continent intestinal reservoir?? Its what you have now but on the inside. My son has UC and his doctor shared this info with us at his last Remicade treatment. You will have to google it as I don’t have much info on it yet. Thanks for sharing Pam
That is great! I pretty much agree with you about all that!!!!!
I was reading all your stories and I just wanted to say I had my colon removed almost 2 yrs ago and i’m still in misery. I had my rectum and anus attached to my small intestines and I have pain and constant feeling of wanting to go to the bathroom. My life has changed drastically and I don’t ever leave the house mainly because of the pain. I was thinking maybe I should have gotten the J pouch. Please someone tell me if you think this is what I should do! I WANT MY LIFE BACK! Thanks.
Dear Blake:
Thank you for your pictures (esp. the first one!:) and your information regarding your colon removal. I have been suffering with UC since 2004. I’ve been in the hospital, taken remicade & all the other meds. I wear pads every day, just in case I can’t get to the bathroom on time.
I live in FL & love to swim and do water sports, but I doubt I can do them for 3-5 months with that bag. In the long run, it will be worth it.
Thank you again for sharing a reality for some of us. If you can do so good, we can, too! Take good care of yourself & your beautiful family.
Connie, just wanted to let you know that swimming is part of my workout routine. I swim 3x a week in a public pool and have never had any problems with my bag. Once I found the system that works for me, well there’s no stoppIng me! I swim, cycle, hike, do yoga and even bootcamp AND I’ll be 50 yo in April!
It’s all good!
Bbalanzd
Thanks Connie! If you do decide to get the surgery you’ll definately be able to swim as long as your comfortable with it. They make a lot of products for swimmers like Kim says. You’ll be able to do more after surgery than you could when you were going through a bad flare, just think of it that way. Good luck to you with whatever you decide! Thanks!
Great story. I got an S pouch in 1982, the precursor to the j pouch. I was in the hospital for weeks. You were out in in 3 days!! Damn! An inspiration.
Tuxedobird,
You’re like one of the founding fathers of this surgery! Congrats on your 30th anniversary, that’s pretty amazing! I’m sure the surgery was a lot different 30 years ago, I’m sure I wouldn’t have been recovering so quickly back then. Thanks!
Hi Blake. Very impressed by your positive attitude. I was not so fortunate as you when it came to my ileostomy operation or more accurately pancolectomy which is the whole works. I had gall bladder and vascetomy done at the same time. I did not have the pre-med drugs that I should have had. I was in surgery for 10 hours and had 16 pints of blood due to an infection. This means that must have lost 16 pints. My liver was greatly enlarged. At one stage it looked like my system had packed up and they waiting for me to die but I had a wife and 4 very young kids. It makes feel emotional to think about it. With about 6 or 7 tubes stuck in me and nurses sitting quietly watching me I started to sing or croak an old scottish ballad. After a few words I produced a huge vomit of bile. It was the equipment that was dud and not me. I was in intensive care for 5 days and in hospital for 6 weeks. Was it all worth it? That was 41 years ago. In that time the kids are grown up been through university and are now 40s. I had my career in electronics and military computer hardware ending up leading a small group of very clever engineers. I am now well into my 70s. My older daughter also has had her large colon removed but with an internal pouch. She occasionally gets flare-ups but successfully uses Danone probiotic drinks to control it. I would like to suggest that colitis sufferers try these. In Britain they are readily available in supermarkets and I only say Danone because they are the ones that Fiona happens to use. One final point. From time to time we get leaks from our bags. When you do get one have a good look and see if can figure out why it happened. Good luck Blake.
Thanks Sandy. You’re surgery sounded pretty horrific. Thank God medical technology has come so far or I probably wouldn’t be so lucky. Glad to hear that your doing well and you’re in your 70’s. That’s probably longer than you expected to live 41 years ago. I haven’t had a leak in my bag yet and I’ve been experimenting with all sorts of bags, but my skin has gotten a little irritated recently, but nothing too bad. Good luck to you and your daughter! Take care!
Hi Blake I live in the St.Louis area. Would you mind telling me who did your surgery and where you had it done? I’m in the planning process and trying to find the best.
Thanks for sharing, Katie
Hey Katie! I was excited to see you’re in the STL area too. I went to Dr. Alexandria Gutierrez (hope I spelled that right). She works with a surgeon named Dr. Safar who’s really good. He does these surgeries all the time. They work at Barnes Jewish hospital. Let me know if you need a phone number and I can get it to ya. Good luck in whatever you decide.
Hi Blake. I have Crohns/Colitis….obviously im greedy so i need to have both!! Well done getting over your surgery so quickly! I had an emergency Ilesotomy so i hated mine at first but you do get used to them! I even gave mine a name ‘Colin Colostomy’. Sounds stupid but ‘Colin’ became part of the family as he was the subject of much entertainment for me and my husband! We were newly married (I was 26) so having a bag stuck inbetween us was horiffic for me. Luckily my hubby helped me change it until i eventualy got used to it, listened to me moaning when i had a down day, and laughed his head off when it decided to ‘fart’ whilst we were at a funeral…FAIL!! That was 8 years ago. I decided to have mine reversed after 2 years and luckily i have been fine since. That was 6 yrs ago. I do miss ‘Colin’ sometimes, expecially when there is a queue for the toilet!
Good luck with your next 2 surgeries and keep us updated!
Sue.
Thanks Suzanne! I’m glad to hear that your J Pouch is working well. I hope I’ll have the same success, but for now I’m happy with the bag. Not living in the bathroom is awesome and I’m eating just about everything that’s gluten free. I’ve already gained back almost 15lbs since the surgery. Something tells me I need to slow down, but hell, I got two more surgeries to go so I might as well fatten up cause I’m gonna lose it again anyway. Cheers!
I just made an appointment to see the surgeon for remmoving my colon and I am super scared. It was good seeing your pictures, and also horrific. I don’t want a colostomy bag, but I can’t leave the toilet, quit my job and I’m raising my youngest while I’m in the bathroom. So I’m getting the surgery. I’m getting the small intestine connected to my rectumand my colon removed. It will be a two-stage operation. After the first operation I’ll wait three months with a poop bag and then the poop bag will be gone and the hole closed up and the small intenstine will go to my rectum. the rectum muscles will stay there. One positive was losing the 15 pounds I’ve always tried to lose (like for 20 years). Now I have to be careful not to lose too much more. I’m 5’10 and 135. I guess I can stand to lose ten more, but yuck, after that I don’t think it will look very good – kind of skeletal. I couldn’t eat though. I was so sick. I was hospitalized for a week around Thanksgiving this year. I got out of the hospital three days before Thanksgiving. I can’t keep taking prednisone. It will start causing bone damage. Remicade I refuse to even try. It causes cancer, lymphoma, heart failure and other serious issues. So forget it. I am opting for the whole thing. I do not want to get the colon removed after also obtaining cancer!
Hey Wendy, sounds like you need the poop bag for a little while. If you had to quit your job and are living in the bathroom, I think you’re making an excellent decision. I’m doing the same thing as you, just in 3 steps rather than two. I also have to wait 3 months in between surgeries, but I’m chosing to wait even longer. I am in no rush because I’m actually enjoying my time with the poop bag right now, I’m not in a rush to jump on an operating table again, but I will eventually. Good luck with everything and let us know how it goes. Don’t forget to take those nasty pictures, people like to know what they’re getting themselves into.
Hi Wendy and All;
Have to go see a colo-rectal surgeon tomorrow for wicked severe constipation and colon removal. Nothing has worked to cure it (my bowels are not moving now) so this is it. Glad to read that others are functioning well – I hope to have some questions answered, and frankly – I am so tired of feeling like s*(&t that I am determined to do whatever is necessary to stop it! I turn 54 in March, and this has KILLED my gym time. All of a sudden I was getting muscled up and then boooom! Bad fatique, nausea, body aches, bloating, vertigo, vision changes – you name it – along with the inability to defecate. Add all this to the osteo-arthritis after 22 years in the USMC – but I know how much better it will be to get this constipation taken care of. I feel for you guys with everything you went through with colitis – I’ll be catching up with you all tomorrow after my appointment!
Thanks,
Mary Beth
Hi Mary Beth,
What was the outcome of your visit to the colon rectal surgeon? I have had constipation, fecal impactions weekly, severe bleeding hemorrhoids, anal fissure and want my colon removed. I cannot function anymore. Please let me know what your outcome was and who can help. I am desperate. Thank you, Sincerely,
Patricia.
Hi Wendy!!!.im also suffering with this horrible disease, just diagnosed this summer,i took a lot of med. already, asacol hd,800 mg.mesalamine enema, with my surgeon, just like you im , lots of antibiotic, prednisone 40 mg, until i taper it off n now im on remicade infusion, this will be my 4 th infusion, n nothing change, i had my colonoscopy lst w eek, n the dr. Told me that i have to consult a surgeon, ima very anemic now, still bleeding, n diarrhea, im also tired w ith this disease, so i planning to make an appt. too
Hey blake my name is vinny and I had surgery a week before you did and im only 17 but im just now getting back into school and I have lost 30 pounds with my ostomy bag. I was wondering if you experienced the same thing I did. And also I still have a very low energy level I get worn out doing the little things and Im trying to play football agian for my senior year since I missed this season becauuse I was so sick. I was just wondering if I will get my weight and strength back like you did.because I know that in the condition I am in now with my strength and energy level there is no way I can take football aggian and that is my goal I miss it so much. I understand health is my first issue but I wanted to know if someone else was experiencing the same thing I am after the first surgery?
Yes I experinced it still not strong like I was before surgery but better and better hope you get stronger to.
hi i wanted to ask how it feel when you eat food and it goes through you ileostomy. and also why did you have a drain in your bottom?
Ha ha, good question Mohammed. I didn’t even know I had a drain up my butt until the doctor said something about it, then I became aware of it and felt like I could feel it everytime I moved. I don’t know the medical reason, but it was there just to drain out what was coming out of there. It was almost like a dark brown, blackish liquid. It was pretty nasty and it wasn’t pleasant getting it pulled out by the nurse. The answer to the other question, how does it feel when food goes through your ileostomy, I can’t even feel it most of the time. Sometimes you know it’s happening cause you hear noises or you feel your bag getting bigger, but most of the time it happens and I’m not even aware it’s happening. I can’t tell you how awesome it feels to be able to sit around and not get up every 10 minutes to go to the bathroom. I can just sit around for hours now and only get up when I want to empty the bag. I do have to say that I still have to use the toilet about once every day, or every other day still because I still have a rectum and that is still inflammed. So technically, I still have UC. I still see blood and puss, but it’s not that bad and is easy to control.
Had the colon removed last July. Prior to surgery I was up more than 10 times a night, plus multiple movements during the day. Fortunately I’m retired so it didn’t interfere with work. Had the total proctocolectomy with an ileostomy. The recovery took a long time (4 months). I’m in my 70s. Life is now good. Do not have the stamina that I had before, but can eat anything and am a lot more comfortable. Did have joint pain after coming off 2 yrs of prednisone.
Hey Vinny, everybody’s situation is a little different. I actually lost about 30lbs when I was just dealing with UC. I’m gaining that weight back pretty easily now because I’m eating a lot of the foods I couldn’t eat when I had UC and I’m not shitting my brains out. It’s almost 2 months after colon removal now and I feel great. Sometimes I forget I’m even wearing a bag. I’ve been going to the gym, working out harder each time, but still taking it easy cause I really don’t know my limitations yet. Be careful when you exercise and don’t push too hard yet. I think your energy level is low because that is natural after going through such a traumatic surgery, your body needs time to recover. You’re probably used to sitting around a lot on the couch, playing video games and taking it easy (that’s what I did for about a month after surgery). If that’s the case, time to start getting physical buddy. Start slow and pick up the pace as you go and feel more comfortable. You’ll get your energy back and the weight will come back also. I don’t know about playing football cause I’m not sure what kind of damage your stoma could take but if you’re doctors okay with it and you think you’re ready, I say go for it! I got a lot of comments from people telling me I shouldn’t be lifting weights and stuff, but I pretty much ignored them and I’m doing okay. By the way, there are these bags made by Cymed, check them out when you order your next supply. These are what the athletes with ostomy’s wear. I tried a sample and thought they were great and am going to order some. Sorry you had to go through this so young, but it’s only gonna make you stronger bro. Not many 17 year olds have to deal with the stuff you’ve dealt with. I wish you the best of luck and hope you get back on the field buddy. Let me know if you have any more questions.
Ok thanks i have a few more questions i havent found anybody that is in the same situation that i am in. what is the 3 part surgery? my next surgery is march 12th and all they are doing is connecting my intestines back to my rectum because i already have my j pouch.. and it seemed like you where in good shape before your surgery. i was to i lifted weights every other dsy and after my surgery i couldnt even lift half of what i did before and i was only out for about 3 weeks. did you loose any strength at all? i feel like im a completely a different person now.
Vinny, yeah buddy. I lost a lot of strength after surgery. It’s depressing to go to the gym sometimes and realize how much strength I lost, but it’s coming back. I benched 215lbs the other day for 3 reps. Before surgery I could get it about 12 reps. But I’m happy about not having to take a crap in between sets anymore. I’m pretty sure it will all come back with time, just gotta be patient. When the weight comes back, the strength will too. The 3 part J pouch surgery is exactly what you’re getting, except in 3 steps instead of 2. My first surgery was just colon removal and ileostomy. Next surgery they will create my J Pouch and remove my rectum, third surgery they’ll hook it back up. That’s probably why your taking more time to recover, cause you had your colon removed and they created the J Pouch all at the same time. You’re way ahead of me. I’m sure my 2nd surgery will be a little bit more recovery time and painful, so be thankful you already had that done. My roomate in the hospital got the same surgery you’ll be getting next and he seemed to be in a lot less pain than I was, and he was probably 45 years old. He was walking around on his own the day after surgery. I think your next surgery will be a walk in the park compared to your first. I’m also going to take a bit more recovery time in between the 3 surgeries. Doctor said all I need is 3 months, but I’ll probably do more than that. I’m not sure. Anyway, take pictures and make a story out of it on your next surgery. I’d be interested to see them. Good luck bud!
Blake,
I hope you provide updates after your second and third surgeries. I am scheduled for my first surgery in a couple of weeks so I could ski through the winter. My decision was prompted more by a concern about cancer but it will be nice to stop worrying about manage my disease.
More than I don’t like the idea of a bag, I am not excited about having physical activity restricted. I was training for a triathlon before deciding to have surgery and my doctor suggested that being healthy should help the recovery. It will be interesting to learn more about your story because I have to believe everything will get much better after the last surgery.
Hey John, sorry for the late response. I responded once I thought, but I don’t see it posted. I’m sure you’ve already had your surgery by now. I hope things are going well and you’re adjusting. I was scared about limiting my physical activity as well. I pretty much ignored my doctor’s suggestion, he said don’t lift anything heavier than 10-15lbs the first month and a half. I couldn’t handle that. I think I started doing push ups about a week after surgery, just to test my boundaries, nothing crazy, but like 10 push ups here and there. I went to the gym a week and a half after surgery. Walked on the treadmill, lifted a couple light weights, didn’t do anything that would use my mid section. After about a month, I was back almost to my old routine of weight lifting. Two and a half months after surgery, I was as strong as I was before I got sick with UC. It’s been great! I don’t do all the stuff I used to, mainly the exercieses where you have to lay down, or put your midsection against some machine cause I’m still kind of scared to, but other than that, I’m doing everything. Good luck with all your surgeries John, keep us updated!
Wow… Pretty much everything you said, I instantly connected with. I had my first surgery for UC this past January 5th. Like you I had been sick for along time, about three years, before the surgery. When I was diagnosed I thought it would be easy but I was sO wrong. I went through every single treatment for three years and none of them worked. I was living off prednisone for three years and now that I’m off of it; it has caused permenant damage. I mean I’m developing glaucoma at age 15!!! But I can seriously connect with everything you said. I was depressed laying on the couch and seeing my friends play soccer and go to school without me. When I got so bad, I started having blood transfusion because over half my blood was gone and I even went to mayo clinic for an opinion and they said surgery was the only option. And now that I’ve had it, I am so glad! I may not like the stoma but I am happy to be smiling again, not puking, bleeding, pooping my pants, popping 20 pills a day, giving my self shots in the stomach, and no starving my self for two weeks becausE of the pain. Food caused me. And the best part is im cancer free! When they took my colon out hey found cancer developing on it. It makes my so grateful to have had the surgery when i did. I am so happy now and I’m glad you are too!
So glad to hear your feeling better without your crappy colon Morgan! I feel the same way. I’m really glad to be off prednisone as well, that stuff was horrible. I hope your back to soccer and everything you did before. Are you getting a J pouch eventually? I will be and I’m just hoping a J pouch is as good as the bag, but I know a lot of people have a lot of problems with it. Oh well, I’ll deal with that when it comes, just gonna enjoy my time out of the shitter for now. Good luck!
I actually ha the J-pouch made on my first surgery so I only have two surgeries. The only thing annoying about the J-pouch is that before you get hooked back up, you have to do a lot of butt exercises to rehab your anus muscles you haven’t been using. If you don’t do this you’ll have a hard time holding your poop in. And yes I am back in soccer for the first time in thee years! I made my high school team and I’m happy to say I am playing with an iliostomy and am the only one to ever have one in my school!:) It just makes me laugh every time I get hit in a game because the other girl doesn’t know they just touched an intestine… I am very comfortable about telling my teammates about it since its hard not to notice it in the locker room. I am so pleased that this saved my life, but I am ready to get rid of it. And I’m happy to say my reversal surgery is this Thursday! I am very excited for this one so I can stop handling my poop 24/7… Hope all is still going well with you!:)
Wow! I used to play soccer, 4 years in high school, 4 years in college. I imagine getting hit in the stoma probably stings a little. You’re a tough girl. Good luck Thursday with your surgery, hope everything goes smoothly for ya. I’ll start practicing my kegal exercises now, thanks for the advice!
Thanks do much! And I know everything will be fine. Just keep hanging in there!:)
hello blake . you`ve given me a litte hope . 4 weeks ago started pasing loads of blood and feeling like crap .ended up having colon removed 2weeks later . the shock of it all and having a bag angered me 4 a good week and was not good 2 b around . have 3 kids and another on way , my miss`s was a rock and saw me through the crap in my head . i coach and play rugby in the uk and thought all that was over . was told no more sport and gym by a mis informed nurse which was hard 2 take . but surfing the net yours was a good story 2 read :-) as now i gotta get back 2 light exersize ahd replace the the 3 stone i lost :-) have u found it hard 2 find the motervation 2 get going as i have 2 admit still stuggle with idea of being in a gym with my bag . but think i gonna have 3 try :-) cheers
Thanks Paul. One of my biggest fears after surgery was no being able to as active as I used to be. Was scared that I would have to quit lifting weights, softball, soccer, swimming, etc… Well, not true. If you’re scared about working out with a bag, don’t be. They’re easy to conceal. I just use an ace bandage aroung my stoma. It helps for hernias, also conceals the bag better than just a t shirt. Definately take it easy at first, figure out what you’re capable of, and just start building back up. It only took me about two and a half months of lifting to gain back all the weight and get as strong as I was before UC. I have my second of 3 total surgeries coming up in less than two months. I’m not looking forward to getting split open again, but I’m not scared either. I just hope you can find the time to work out with 3 kids and one on the way. Haha, I’m sure you will get back that weight bro. I hope you feel better soon and get back to livin. Good luck Paul!
I have been bleeding again for five days and am on Asacol 4 times a day and Imuran and the enema. What more can you take. I have lost 15 lbs in a year and would like to gain weight. I also am getting sick of this. All these foods people say to eat with UC and what not to eat confuse me. Stay away from bread and oatmeal, etc. Those are the things that I think would put weight on me. I also hate the fact if I want this surgery will I be going to the bathroom constantly. I am very active so this bothers me. I am a strong person and will be able to get back on my feet. Can you help me find the courage to do this or at least talk to me about foods I can eat. HELP!!!!!
Hey! I have had a 2 year battle with my UC trying to avoid surgery, LONG story short lots of flares nothing worked for me.. Im actually getting my first surgery tomarow, im not as nervous as i was at first or scared, because now i just think to myself, “i wanna get this damn thing outa me already” so im quit ready for the surgery.. Im 16 and im kindof excited to be colitis free.. I say cut me open doc! Thanks for all of your advice it was helpful
Good luck Clayton! Sorry it took so long for me to respond. I’m glad you’re excited, not many people are about this surgery. By now, I bet you’ve had the surgery and are feeling great. I got two more surgeries to go. Keep us updated bro.
Hey blake,how you feeling now?hope all is well?im going in on 7/6/12any info would be great?thanks Rico
HI Blake, I’m a 25 years old facing colostomy. I would like to know if you can email me. I have some questions to ask you regarding your surgery. I live in San Francisco and my doctor has told me that I need to have colostomy done. I already had three surgeries to fix rectal Prolapse but I dont get any better, so she wants to remeve my rectum.
I really dont wanna do it, but after reading your story you make it sound like life is so much better than what my is right now :-(
I hope you get this and email me.
Thanks
Jvan
Hey Jvan. Sorry, I haven’t looked at this story for a while, didn’t realize I had more comments. If I can help you out in any way, let me know. Just message me your email address and I’ll try and remember to check this out the next few days.
Hey Blake,
Was just wondering if you can now eat whatever you want without any ill effects???
So, ice cream, chocolate, sweets, fast food, pizza, soda, alcohol, etc.
I’ve had UC for approaching 6 years. Seriously considering surgery to get rid of the old colon, but want to hear the limitations from ‘the horses mouth’ as it were.
Actually at the moment, it’s not so bad, but I know that this is a temporary thing and it will be back with a vengeance at some point.
Anyways, looking forward to hearing from you.
Thanks in advance!
Yo Jed,
Good question. What can you eat? Well, assuming you have no food allergies and you go through a J Pouch surgery, you really should be able to eat just about anything you want. Of course, there will be limitations in the beginning. They want you to avoid fruit and veggies, with the exception of bananas. Vegetables such as lettuce, don’t really break down very good without a colon, but I hear a lot of people eat veggies once they’re all healed up (I never liked em anyway so no big deal for me). Anything that doesn’t break down easily you’ll want to test out before you go eating say a whole can of peanuts or something. Peanuts do not break down. They come out the same way they come in, and that can mean some pain for you b-hole when exiting. I’ve had several snickers bars since surgery, made sure to chew up the nuts real good and I didn’t have any problem. I had a carmel apple the other day loaded with walnuts. I don’t think I’ll do that again, the walnuts weren’t so good to me on the way out.
I am limited with what I can eat anyways being a Celiac. I’m allergic to gluten which is in wheat, barley and rye. That means no wheat bread, pastas, beer and a million other things cause they use wheat flour in just about everything. I just eat gluten free bread, pasta, etc. Alcohol, this is a tricky subject for me. I used to love to party before all this shit happened to me. I’ve gotten drunk once since I got the J Pouch. Really drunk. I ended up puking all morning because of it so I’m trying to just say no to booze for now. But I don’t see why you would have any problems although I’ve read a lot of J Pouchers can’t handle red wine or some particular drink they just found out doesn’t work for them. It’s all about experimenting.
I’m definately not scared to eat anything anymore. I’ll try anything I know is gluten free. I’m definately not getting any skinnier either, no starving for this guy. I think one of the main reasons a lot of people get surgery is because they’re so scared of what to eat. This surgery does eliminate that fear. Good luck with whatever you decide bro!
Ah, I see, so you have certain limitations either way, but Snicker bars! Man, would I love to chow me down one of those bad boys right about now…
Amazing that the operation enables so much freedom, firstly, from the worry of what you’re eating and what it will do to you, and then secondly of course, freedom from dreaded bathroom visits (especially the public ones *winces at the thought*).
Thanks for the feedback, Blake.
When’s your next op btw?
I’m all done with surgeries. I had 3 total, I’m about 10 weeks into living with the J Pouch now and feeling great. Check out my other story on here, it’s called The Journey to a completed J Pouch.
Right, gotcha. Will do!
Thanks for your time, Blake.
Much appreciated.
No problem Jed! Good luck man!
Hi Blake
I am a 26 year old female (UK) 5 weeks after a colon resection from Crohn’s disease after every drug failed me (including remicade which they gave me without seeing if I was pregnant – that’s a story in itself), then 3 yeas ago getting a bladder fistula as the dodgy part of my bowel had taken a liking to my bladder (Big big ouch). I didn’t need a stoma but I wish I had one as the pain I am experiencing 5 weeks on is not what I signed up for. I am glad to read a story which is inspiring because all you read is horror stories these days. Back to the doctors I think and see if any antibiotics and strong pain killers are in order. My 17 week old son needs his mum.
Thanks
Jemma
Thanks Jemma! Sorry I haven’t responded, didn’t know I had new comments. I hope you got your situation squared away. I guess I’m pretty lucky that I had no big problems from all these surgeries. I had a lot of hurdles to clim, but it was well worth it and I’m doing fantastic. I hope you are doing well also. Take care!
Hey man just read your story I really enjoyed it and totally related! Im 27 and had my colon removed in a emergency surgery because it had a hole in it from my fight with UC. So far I do nt mind my bag, its nice to eat food again, not crap blood and enjoy my family.
Thanks for sharing
Clint
Thanks Clint! Yeah, the bag is not so bad right? Hope you’re doing well, probably have a J Pouch now like myself. Sorry it took me so long to respond. I didn’t know I had new comments. Take care bud!
Hi blake I was wondering after first surgery did you bleed any rectum and if so what did you do about it thanks pete.
Hi Blake, et. al,
Thanks for sharing your stories. Im glad there are others that are sharing their remarkable stories. Just found your blog and want to know if you have had the second surgery yet. My wife was one of those unlucky 1%ers that medication was not working. She had the first surgery Jan. 6, 2012 and the second one in late June. It’s been tough watching her suffer. It was great she lost all the weight Prednisone causes you to pack on, but she is finding out that the J-pouch is worse than the ostemy bag. She is still going to the bathroom 10-20 times a day and cannot get any restful sleep because she has to go every hour, day or night. Her stools aren’t bloody anymore but she is always sleeping and now she is on the verge of losing too much weight.
Have you ran acrossed these problems? If so, what is working for you?
Thanks.
Barry
Hey Barry,
Sorry I haven’t responded sooner. I haven’t checked this post for a while. I had all 3 surgeries now, been crapping on the pot for about 10 weeks now. The first couple weeks with the J Pouch were pretty ridiculous. I was going around 20 times as well. My sleep was awful too. I think at about the 1 month mark, things got a lot better for me. Now at 10 weeks, the only thing that could really get better is the sleep situation. I still get up 1-3 times a night to go. Overall, I’m super happy with the J Pouch and glad I did it. I hope your wife’s situation has improved, sounds like she was still in the early stages of her J Pouch, so hoping she’s getting better like myself. Sorry for the late response again. take care!
Blake,
Thanks for sharing your story. I was diagnosed with UC three years ago. I completed my third procedure about 3 months ago. I understand everything that you are and were going through. I was relieved after my first surgery that I didn’t have to continue to be in pain and have so many trips to the restroom. I am still recovering from my third surgery but, so thankful to not have to wear a bag anymore. Each surgery is differnt, first surgery I recovered well, second hit me like a ton of bricks and the third well, let’s just say I’m glad its over. Good luck with your remaining surgeries!
Thanks Ashanti. I’m doing great and hope you are as well. Really glad to put all these surgeries behind me and hoping for no more in the future. Best of luck to you!
I know this post is kind of old now but i need advice I guess. I know this is my best bet of getting better but I’m scared to death of it. I’m scared because of the pain, the restrictions, depression, and honestly a little of the love life. haha I’m barrely 18 but everything out of control and has been for a year and a half. How was the rest of your surgery!? Howd it go? be truthful please haha.
Hey Autumn,
Yeah, the thought and idea of surgery, losing your colon and all that crap is really scary. Anyone would be scared. My UC was out of control, one way or another I was going to end up colonless, so I did it on my terms… for the most part. I wrote a follow up called “The Journey to a Completed J Pouch.” It is under the surgery tab up at the top. Read it.
As for now, I think I’m 13 weeks post takedown, or 13 weeks living with my J Pouch and things are great! I go to the bathroom around 5 times a day, usually wake up once a night. It doesn’t hurt, I can hold it and I don’t worry about accidents. I’m eating what I want, back in good shape, things have been really good. There are still a few things that can improve, but overall I’m very pleased and all the worrying I did before I had surgery did me no good. Nothing “really” bad happened. There were a few bumps in the road, but nothing too severe. I wish you luck, let me know if you have any other questions.
Hi Blake,
Thanks for all of th information and taking time to respond to everyone. They have yet to diagnose me with Crohns or UC but I will know in a week when the Promithius test comes back. Either way it sucks, my recent flar has lasted 3 years now and I have lost 40 lbsin the last 4 months. I have been on the entire meds arsenal including Remicade that only made things worse, they suggested Humira but I am tired of getting sick from all of the meds that are suppossed to make me better, even asacol and lialda damn near killed me. So now I have an appointment at the Cleveland Clinic to consult about removing the entire colon since the entire damn thing stopped working and looks like a candy cane on steriods. Anyways I need to ask you if you had the sever joint pain that some get with their UC or Crohns? Mine just recently started overnight about 6 weeks ago and it is debilitating. Nothing like not being able to stand up after filling the toilet 10-12 times per day because you rknee joints hurt to bad. My shoulders, wrists, hands and knees have basically been shut down.
Hey Mike,
No problem, I like tying to help any way I can. I was lucky, I never experienced the joint pain that I’ve read so much about. I know a lot of people get severe joint pain with UC so all I know is that it is very common. I’ve also heard a ton of good stuff about the Cleveland Clinic. They’re one of the best around at removing colons. As shitty as that sounds it’s a good thing and you’ll be in the best of care. Three years is a really long time to have a flare. I think it’s safe to say you’re making a good decision here. I know there are a lot of posts on this website about joint pain, Adam just posted something the other day where I read like 30% (I think) of UCers have joint pain. Good luck with the appointment and the future. Let us know how it goes.
Thanks for the reply Blake,
Be thankful you never experienced the joint pain, it is debilitating. I am by no means a physical speciman like you but I was once 6’2 and 275 lbs failrly active and in decent shape but about 6 weeks ago I just woke up one morning with it with no warning at all and it is very tough to admit that at times I have to get help to stand because my knees hurt so bad, I can barely lift a gallon of milk and I cannot twist the cap off my bud light bottle because my wrists just will not work because of the pain. The worse part is my shoulders, I cannot even reach out to turn a light switch on. Right now the only thing keeping me mobile is Vicodin. My support group has a couple that had the surgery and the joint pain decreased substancually or went away for good. The meds my Rheumy put me on just makes me fill the toilet with more blood and the remicade has already failed. I have been fighting this for 20 years now and this recent flare has lasted three. I have tried every diet, health food/home remedy and medicine that makes sense with no luck. I am terrified of the surgery but my GI is telling me I am out of treatment options and I need it and also says that since it is UC and not Crohns it will be totally cured once that rotten piece of bowel is removed. After my last colonoscopy last month he fears that I may be close to a perforation which is bad news all the way around. To tell you the truth I am scared shitless (no pun intended)of this surgery. Will my basketball days be over with?
Hi Blake it’s Me again. Did you ever have any irritation or bleeding around the edge of your stoma andif so how did you get it to stop. I made a tighter fit and used alot of powder this last change maybe that wil help. Also after you r first surgery can you remember if you had any bladder issues? I seem to be having some spasms and a funny feeling in my bladder area and am having to pee more often than before. It has been exactly 4 weeks since my colon removal.
Mike
Hey Mike. Yeah, I remember having some blood around the stoma, mainly when I changed bags. I dont think I did anything to make it stop, it wasnt a really big problem, I didnt bleed a whole lot. Definately had some irritation. I would scratch the shit out of my skin after I removed the bag. You just have to try and keep that skin clean and dry as best as you can before putting on the next bag. I would use the stoma powder. I would make 3 or 4 layers with that befor putting the bag on. I would stand in front of a portable fan to dry it out before putting on the bag. Dont remember anything weird going on with my bladder, could be some lingering effects of having a catheter up there, but you probably want to ask the doc about that one. Take care!
I feel for you Mike. Sounds like time for a change. Have you decided on whether to go for surgery or not? I know of a pretty good forum with a bunch of people with J Pouches: http://j-pouch.org/groupee/forums/ I would go on there and pose the question to some of them to see if there were some people struggling with joint pain and see if surgery helped them out with it. I’ve read posts on there before about it. I’m sure you could get some better answers from them. And to give you some hope on your future with basketball, I’ve never been really good at the game, but I would guess that I would have no problem playing basketball right now, only 3 months after takedown. It can be done so don’t give up hope. I’m hoping you find some relief buddy.
My surgery assessment is on Dec. 11th but yes, at this point unless for some reason they tell me I can’t have it I am going to. This last week has been hell and nothing can seem to slow it down. I am almost at my breaking point. The gut pain, night fevers and loss of blood are taking its toll.
Hey Mike,
I asked this question on that forum. I’ve only got two responses. It seems that surgery could help with the arthritis. A mother responded and said it did help her daughter and another said,
“My understanding is that if is just the peripheral variety that follows the disease course, colectomy will help. But, if it is the spondyltitis type, involving the sacroiliac joints and hips, it probably won’t make a difference.
My enteropthic arhtritis did not rally bloom until nearly a decade after my colectomy surgery.
So, the short answer is, it depends”
I don’t know what the hell peripheral variety means, but that was what I got so far. If you want to follow that question, the link is below. More people may respond.
http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/6117097626
Well my visit to the Cleveland Clinic is over. My surgery is schduled for January. I see how this place is one of the tops in the world. They did not let any stone go unturned during my surgery assessment and even had me spend time with 2 Drs from the surgery team. I was quesyioning myself the day after my visit because I actually hada pretty good day. I only crapped 7 times and was able to walk without a cane and then today hit. 15+ craps with alot of blood loss, weaker than hell and unable to walk and could barely push myself off the toilet due to joint pain and another fever. Felt like dying until I took a couple vicodin and sent to happy, happy land. I swear if I was good with a kniffe and could tolerate pain i would have cut that piece of rotten shit out myself (no pun intended). I am sure as the time nears I will start to freak out and may call on the veterans of this surgery for a little comfort. Now go and enjoy the meteor showers over the next couple nights.
Mike, that’s awesome. You’re in good hands at the Cleveland Clinic, they do this type of surgery all the damn time and that’s what you want. Not some general surgeon that may have done one a few years ago. I wish you the best, hope this takes care of the arthritis as well so you can get back to basketball and opening beers with your hands again. Take care man!
Hello Blake,
Am writing from Italy, got operated one year ago, and some things are going better.
Unfortunately I have no J-pouch. Do you know maybe some forum where I can read something about what to eat? Or aboaut medication?
I tried in this year and made many research, but all I could do was to make experiments on my own.
I miss eating veggies and fruits a lot!!
how is your diet?, and do you have pain on the scar?
Thank you in advance
Ginger
Hey Ginger, love your name. I never was really on any forums for ostomy, but I did a quick google search and found one that looks pretty good:
https://www.ostomy.org/forum/viewforum.php?f=2
That is the United Ostomy Associations of America, they sound pretty legit to me. My diet is pretty much anything gluten free. I have Celiacs so I’m allergic to wheat, barley and rye cause they contain gluten. Lately, I’ve been throwing up if I accidently ingest gluten, so I’m doing my best to make sure I don’t eat that. I would probably not do so well in Italy since everything revolves around pasta and bread. I don’t eat much fruit and veggies anymore (not that I ever was a huge fan anyway). I eat bananas and drink orange juice just about everyday. I should probably start experimenting with more greens, but I just haven’t gotten around to it. I don’t have any pain on either one of my scars. I’m pretty sure I have a hernia or two, but they really don’t bother me unless I sneeze. If I sneeze and don’t push my stomach down with my hand, I usually get a hernia but I just push it back in and go on with life. It really hasn’t bothered me enough to go talk to a doctor about it yet. So do you just have an ostomy? Was it from UC?
Hey my name is tad I am in the Hospital right now, have been here for a week and was in here 6 weeks ago for 2 weeks. I was a little iffy about doing the surgery, the dr mention it during this last stint and I have been doing some research the last few days and came across your story. Reading how your surgery went is very inspirational and I have to say it gives me some relieve, I know everyone is different and my outcome could be as we’ll but I am going ahead with the surgery and I think reading your story kinda put a little perspective on a lot of things. Thank you for sharing it and I will try to write back again after my first surgery
Hey Tad,
Blakes updates and timeline really has helped me as well. My surgery is just 2 short weeks away and I am actually looking forward to it. Everyone I have talked to have wished they would have had it sooner. The pain and the symptoms will go away but it may get worse before it gets better. The way I look at it life without a large intestine has to be better than the complete misery I am going through now with one. Unfortunetaly diets and medicine do not work for everyone like us. I hope to try keep notes of my entire stay and post daily on a blog that I am going to try to create soon. It will start one week before my surgery and I will post often until I am past all corners and feeling better. I hoping to make this as detailed as possible and as current as possible to help people like us.
Thanks Mike and Tad! Just to give you some more inspiration, I’m feeling great! I ate soooo much junk at Christmas and I haven’t had any consequences besides going to the bathroom like a normal J Poucher does, meaning about 5-8 times a day. It’s been really great. Of course J Pouches aren’t perfect, but my life with my J Pouch is atleast 100 times better than my life was with UC. I’m really happy I had the surgery and I think you both will be as well. Good luck with your upcoming surgeries and let us know how things go!
Hi Blake,
Not sure if youa re still monitoring your posts but I am 9 days past colon removal and it looks like I am following your footsteps. I was home 4 days after surgery and feeling better by the day. Everything went exactly to plan and if I put it all in words (I will but maybe in a different perspective)it would sound just like your very first post after your first surgery. My UC symptoms are gone and the joint pain has decreased to a point I can live my life again. One question, was your second surgery laproscopic as well or was it the BIG cut?? The second of my third surgery will be in May or June.
Mike
Hi this is Tad I had my surgery on the 10th and was home on the 14th doing great . Yeah the pain is there sometimes but not the pain from the uc it’s surgery pain and gets less by the day . I still have to have two more surgeries but if it goes anything like the last one it will be a breeze !! Not sure when my next surgery is have to meet with the dr on mon the 21st and then see how I am progressing and go from there. Thanks for all the positive stories and your progression during theses times didn’t know what to expect but listening to you guy helped me out a lot and I thank you all .. I will keep you posted about my health
Hey Mike and Tad,
So glad to hear things are going good for both of you and they will continue to get better with time. To answer your question Mike, my second surgery was the same incision as the first, a C section type incision. My 3rd surgery was all through the stoma incision. So they’ll probably go through the same incision again. It also depends on whether you’re getting 2 step or the 3 step. Glad to hear your joint pain is getting more tolerable. I wish you both continued success!
I had UC and was very ill. Was on 60 units of steroids a day for nearly 1.5 years. Got my entire colon out July 2010. They fashioned a J Pouch, but I had a bag for 2 months and then they took it off.
I am getting along fairly well, but I continue to go to the bathroom about 8 times on a good day and 3 times during the night. But on bad days, I can go up to 20-25 times a day and every hour on the hour at night.
I am taking 3 teaspoons of Metamucil during the day and up to 16-18 Immodium ADs a day. Bad stuff, but without it, I would have to live in the bathroom.
Is there anything you know of that I can get my doctor to prescribe for me that would slow my intestine down so I don’t have to go all the time?
Hi Bruce
I was on similar meication as you are hang in it will get better , takes time you will get to know your system better than thd doctours do,not saying dont lisen to them as they are outstandin peoplebut you will know in time whats best for you.
Hey Bruce. Do you have bad days a lot? Sounds like pouchitis if you’re going that many times. Luckily, I havent experienced pouchitis yet but I read its fairly easy to treat with antibiotics so see your doctoe about that if it keeps up. I know there ate a lot of drugs your doctor can prescribe to slow your bowels down. Ive taken lomotil and immodium in the past for this (when i had uc). I would definately urge you to see your doc about this if it’s a recurring problem. Hope your good days far outnumber your bad days bud. Take care!
Hey Blake,
Glad things are going well for you.
Just in case this is useful…when I did my original research on the vsl #3…I noticed research on the prescription strength dose I take was originally done with positive results for pouchitis. You can look it up…every time I try to repost it won’t take the site. It is vsl3 DS (double strength) and your doctor just needs to have the codes for the Rx. Hope this is helpful.
Continued good health, ShellyH
Guess I hit a button after my name!! Ooops. :-)
My mum got part of her colon removed. 2months later she gets a cold and when she ciughs it hurts. She doesnt get a need togi ti toliet. Any advice?
I woul dlike to ask another qouestion please. The dr did not explain how much colon I know there are several parts to it. My problem I had ulcerated colitis it cleared up. Now for the last four years just nuggets 4-5 times daily. Then it gets loose and sips out. I have to push others out beciase no muscle tone. It just drop out when it wants. Since I had another colonospny I can not go at all for 5-6 dyas. then I have to take something starting the third day adn still nothing. My left lower side hurts all the time and my back . I am never hungry. Bad taste in mouth. He said my rectum is falling and would fall out sooner or later. My colon is prolaped . Do you really think this is the right surgery or other sugesstions. Hav ehad therapy no good. But what part do they tkae sorsure. He did not expalin just said we may be able to reverse not before 6 months but probally a year if then. I need a peace about this . I am praying and god is giving it to me but wnat to know what to expect form experinece Thank you for your post
Mary, I had my whole colon removed. There is nothing left. You’ll have to ask your doctor whether or not they want to remove the whole thing. If only a portion of your colon is affected, there wouldnt be a need to remove the whole thing. You need to ask your doctoe/surgeon that question. Good luck with everything.
Hey Blake,
Seem like there is light at the end of the tunnel. I am currently going through another flare. Back on the steroids 40mg for 3 months and it about 2 weeks going to start the Imuran. I am seriously thinking of the surgery after this if this Imuran doesn’t work.
Just wondering after the reversal what happens next? Are you able to go to the bathroom? Can you go back to eating anything?
Barb
Sorry for the late response Barb. After reversal I was done with surgeries and doctors visits. I actually haven’t been back to a doctor after my reversal, except for a post op check up. That was like 8 months ago. Yes, after reversal, you go to the bathroom as normal. Or at least as normal as it will be for someone with a J Pouch. You can eat anything, but not right away. They put you on somewhat of a diet, add foods and see how you feel type of diet. I don’t eat gluten (I’m a Celiac), so that cuts a lot of crap out of my diet. But I’m currently heavier than I have ever been. Tipping the scales at about 210lbs. I could afford to drop a few pounds, but I don’t care. Haha!
Hi Blake,
I’m 26 and I had my colon removed because of UC. It was hell with UC, but I was grateful that the GI surgeons at Mayo Clinic in Rochester were able to remove it and I felt much better afterward. I reluctantly took time off college in the middle of my internship during the final month before graduation. Having the bag was awkward, but it was removed after the 3rd surgery. Once the bag was gone though I now feel a part of me is missing and I have to train the pouch to hold stool in. How do you feel without the bag?
Peter
Hey Peter, sorry for the late response. I feel great without the bag. It did take some getting used to. In the beginning, gas pains were a bitch! I thought they would last forever, but they went away. Not completely, I still get gas pains pretty much every day, but it just means I need to hit the pot and release it. I don’t know about you, but I still can’t fart unless I’m laying down… atleast not with any confidence. But it’s not a big deal, I just go blow it out in the bathroom and feel fine. Other than that, I still feel a little uncomfortable where my stoma used to be. I still sometimes feel like I have a gap or tear in my abdominals. Hell, I probably have a hernia, but it doesn’t bother me too bad. When I sneeze or poop, I always put pressure on where my stoma used to be. I do it without thinking about it, almost like my body is telling me to just because that area is still weak. I think it’s all in the head because I can do sit ups, and other ab workout type stuff and feel fine. Overall, I feel good, glad I had the surgery. If I had to do it over I would. You’ll get used to the J Pouch. It can be a little unpredictable, but it gets better with time. Hope all goes well with the J Pouch!
I’ve been dealing with UC for about 2 years and it looks like I’m going to end up getting surgery. I was wondering if you can still stay active after getting it removed (I’m on the golf team at my school and play backyard basketball every once in a while) I know you’re not a doctor but just wanted someone’s input that had the surgery. Thanks.
Hey Sean,
The answer is yes! It will take some time to heal, but you can get back to all the things you did before. I wouldn’t plan on becoming a cage fighter or joining the NFL, but you can still do pretty much anything with a J Pouch. Just last week, I bench pressed 315lbs. This is my personal best ever. I’m actually stronger now than I was before I ever had UC. I was a 2 sport athlete back in high school and all 4 years of college, baseball and soccer. Now, if I was going through all these surgeries back then, I would have probably had to quit a season or two. But I’m pretty sure I could’ve came back to these sports after all the proper healing. I’ve found that lifting weights has helped me a lot. I pretty much worked out through all 3 surgeries. I would have a surgery, wait two weeks and go back to the gym. I would start very light and cautious. By the time I was ready for the next surgery, I had put back on all the weight, was healthy, then would have the next surgery. It was completely against doctors orders, but it worked for me. It won’t be easy, but nothing worth anything in life is easy. You’ll be able to do all what you want after surgery, you just have to work at it a little harder. Good luck with everything man!
Hye blake
how r u i hv no ques.after reading ur whole story.but only one what was doc fee of all three surgeries.ple.ase tell me.thank u
Hey Prince,
I’m not sure what the whole medical bill was after all 3 surgeries. I believe each surgery plus hospital stay was around $20,000. So multiply that by 3 surgeries, it was over $60,000.00. But my insurance paid for pretty much all of it so I am very lucky.
Just had my colon removed on Fri.May 10th. Diaganosed over past yr. at different times
with UC then Crohn’s then finally back to UC. Dr. in Charolotte did a Flex on me in Jan.
wrote one of the most advanced sever cases of Advanced UC he had seen non responsive
to normal treatments. HAd been through remicade,and every other drug known to man.
Had basically given up on life over last six mos. Have been in hospital 5 times in
2013 alone. This 5th time being the surgery. Anemia seems to have been my sore spot as
I would lose large amts. of blood at each toilet trip and there was a pitchfork
up my rear end when I was on toilet. Energy level had dropped to zilch and would basically
curl up in bed all day and cry. Began to believe I was less than a man. Finally got appt.
with the UNC Chapel Hill GI Dept. who are some of the best in the world. They immediately
after looking over my records and doing another colonoscopy on last Wed morning agreed that
andmore drug treatments were uselss and wanted to go the colon removeal route,I was down for anything as I was totally helpless. Came thru surgery well and am wearing the bag which although
is gonna take some time to get used to is a hell of lot better than crapping and screaming
25 times a day. Pray for me guys as the next 3 mos. will be important to get healed up down
there as they will try to reversal in 3 mos. if all goes well. I have learned a lot thru this
and the main thing is there is nothing no more important than your family,and your real friends.
Good for you Brooks! I have a feeling you’re going to like the ostomy bag much more than UC. Once you get over the initial shock, it’s really not as bad as you thought it was going to be. I wish you continued success, keep us updated.
Hey, great story, very encouraging….to BrookinNorthCarolin, I am having my colon removed second week of June, I’ve already had colon cancer before. I am only 40, bad gene in the family, I am the third of my siblings to get cancer. I dont know if I will have the bag on my side or not, it will be decided on during the surgery, but I am praying I dont have to. If I do, I’m sure I will get use to it eventually, it means my survival and the opportunity to have more time with my family. Prayers for you Brook, good luck with everything :)
Good luck RachNewfie! You won’t have to worry so much about colon cancer after surgery so that will be a big weight off your shoulders.
Thanks Blake, I wont have to worry about cancer attacking my colon, but having this bad gene will likely cause it to sprout up somewhere else, I am grateful that at least I know I have it, it meant never being insured or having any life insurance,(Pre-existing condition) but the knowledge is priceless. Surgery for me has been postponed until first week of July, I am scared, this will be my 14th major abdominal surgery, my insides must be like a jigsaw puzzle! They are hoping I wont have a stoma, will connect my small bowel to my rectum, in a way I am glad, but it doesn’t completely eliminate the chances of getting cancer there again.
I am very fortunate to live in Canada, my insurance doesn’t get “raped”, and doctors do not go out of their way to make a profit, they genuinely care about their patients, and their health, and NOT out to make their wallets fatter. But it is not all perfect, the waiting times are bad, depending on the severity of the case, I have heard stories of people dying before surgeries, treatments etc. Luckily this is not the case with me. I have been fortunate to have caring and nurturing doctors around me.
I might have to have it done not sure yet. The generic brand of Imuran is partially working. Have some bleeding from time to time. My insurance will not cover Remicade and I will have to pay at least 400 dollars a month for the Humira. They give you two kits a month. My bleeding is very mild and my colonscopys have been okay so far. I was in remission for 9 months but started spotting. I really don’t know what to do anymore and right now do not want surgery. I need a talk with God!
Thank you for your posts.i am having j pouch surgery this week. They laid it all out for me and is scarey.
Your post has put me a little more at ease. I really think surgery is better than continuing with new meds and still needing the surgery
Thank you for giving me hope
Donnat in AK
Thanks Donna! I agree with you, I’m glad I got this taken care of and didn’t have to continue with all the meds. I was out of choices anyway. Really glad I did it. Good luck with everything!
Really?? What is involved?
thank bro.
I don’t have UC , but I am going to have my colon removed because it doesn’t work anymore . All the medicines didn’t work for me . Doctor going to attach small intestine an I won’t have bag , I am miserable now . Gone thru so many test , really be glad when it is all over .
Good luck Lisa, my surgery will entail the same thing, joining my small intestine unto my rectum, and a small 6 inch piece of colon I believe. I took my phone and recorded the appointments, so much information is missed when you are told you have stage 4 cancer again, its like your mind shrinks back into a dark corner. Upon listening to them after, it sets my mind a little at ease because I know what I am up against, and what I need to do to keep living. I don’t have UC, but a rare cancer causing gene, that attacks the colon first, reproductive organs, then stomach, brain, skin.
The test I have done are not painful, but bothersome just the same, I feel like the devil is constantly chasing me, I was in remission for almost 4 years, but having been told my life expectancy was 1-3 years I did pretty good. So now I am dancing with the devil again. Keeping a positive attitude is very difficult to say the least, but i know that’s what has gotten me this far. I have a brother and sister who have a j-pouch, they don’t go to the washroom 30-40 times a day, honestly, you’d never know they ever had anything happen to them, they both live normal productive lives.
I know that when I wake up from surgery, come what may, I will be grateful I can look into the faces of all the people I love, and love me. Life is what you make of it, and I plan on making every moment of mine count. Good luck again, I pray everything works out for you. :)
Couldn’t read this and not send you lots of luck and love :-) sounds like you have an amazing family and I hope your surgery goes well. What a great idea that you recorded your appointments! My mum was diagnosed with stage 4 cancer in sept 2004… She beat all the odds and made it to October 2012, seeing 2 of her 3 children marry, meeting her 2 grandsons and going to several countries ticking things off on her bucket list. She rode a hot air balloon, saw whales, sw with dolphins, went on a cruise to Alaska and had an amazing 8 years. It made us all better people, wishing you all the best xxx
Good luck Lisa hope you feel better soon. Please keep us advised on your recovery. =)
Barb
Hello everyone, A) Colitis is usually caused by Accutane (the pharm companies do not want you to know about this) B) The jpouch is not the best solution unless it is really bad because with a Jpouch you will go to the bathroom 20-30 times a day sometimes and the butt burn is horrible especially if a fistula around the anus forms and a complication correction surgery is needed. you will be without a colong, rectum and sphincter….making the whole thing a complete racket for the hospitals to rape your insurance company. Wait for stem cell advances or something better to cure this horrible disease. Also, the bag although ugly and high maintenance (plus depressing for your husband to find you sexy) might be a better alternative because after 4 years of pouch you will go back to bag anyways just so you can finally sleep. the internal pouch causes cuffitis, pouchitis, butt burn mega pain-it is…really sucks and is hyped up without telling you risks for both females and males. For males, possibly the worst is impotence 3 years later. So many abdominal surgeries in stages or not causes adhessions, blockages and all sorts of hospital visits where they shove an NG tube down your nose and throat like how they torture the guantanmo bay prisoners with force feeding? not kidding, research alternatives because the j pouch stops working and food gets stuck at the first band…bile comes back up, vomit, pain jesus its terrible…or if you even eat too much one day then get ready to have food suctioned out your nose while you tear up crying in agonizing pain and discomfort.
Mindy,
Dont know where you got all this bad info, but thats just what it is. What kind of advice is it to tell people to wait for stem cell treatment? Most of us can’t wait. I don’t go to the bathroom 20 to 30 times a day with the pouch. Its more like 5 to 6 bowel movements with no pain, no blood, no problem. I’m not impotent and will not become impotent after 3 years. Where do you get this stuff? I’ve never had Acutane, dont even know what that is. Some of what you wrote is plausible, but the way you write it makes it sound like if you get a j pouch you will have all these complications which is not true.
I currently have UC since 2009 and on remicade and prednisone also taking asacol. My doctor has told me that my meds are not working because when they reduce my prednisone my flare ups come back. He suggested I get surgery for my colon to get removed. I also have a dilema, I have been amitted to University and excited about starting and getting involved with school oh yeah I’m 21. I am scared about life afterwards and can’t imagine qhat it would be like. I would like to have your email because it would be nice to have someone to talk to that has been through this. Thanks Man!
Hey Blake. My name is Jordan and I got diagnosed with UC April of 2012 so far I’ve had 2 flare ups the 2nd just happened this past 2 weeks. It really sucks and is annoying all I want to do is be back to normal once again I hate the bloody farts, shits, not being able to hangout when you want for long periods of times because you never know when you’re going to need a bathroom. My life really has changes for the worst and I’m only 20. I’m still young and can’t even live my life to the fullest. I finally just got out the hospital yesterday after my 2nd really bad flare up and the Dr told me I might need surgery to get my colon removed because he didn’t think I was going to make it this time.. I’m finally out but still in a lot of pain and I’m thinking maybe if surgery to remove my colon just might be the best choice at this point? I just had questions as far as the bag how exactly does that work? Like can you not control when you have to go or do you just have to go in a bag? I don’t know how that works so I was hoping you can answer my questions and hopefully I can make the right decision for my future? So can you please tell me how the bag works exactly. It’ll be greatly appreciated and life just isn’t the same anymore all I do is sit in my room watching days pass by not being able to see friends or family. Can’t work. I lost 3 jobs in the past year due to non stop bathroom usage or missed days because of flare ups and it really sucks cuz I can’t pay my car payments now. So if you can please reply to me it’ll much appreciated. -Jordan Lopez
Hey Jordan,
Sounds like a pretty shitty case of UC. What you’re describing is very familiar buddy. Do you get surgery or hope this goes away by some miracle. It’s a horribly tough decision, especially for a 20 year old. I had a really hard time with it at age 30. It’s not easy for anyone to make, but if I knew how good I would feel now, after having the surgery, I would’ve gotten it after my first bloody shit back in 2011 and saved myself a lot horrible bathroom visits. There are definitely a lot of people out there that are not satisfied with their J pouches or ostomy bags, but luckily I am not one of them.
The bag is very simple. After they remove your colon, they stick the end of your small intestine (ileostomy, also called a stoma) out of your abdomen. The bag will go over your stoma and catch all your output (or shit as I like to call it). Most bags are about 10 to 12 inches, so most likely you will tuck this under your jeans or wear a long shirt to conceal it. You will need to empty the bag about 4-8 times a day. It really just depends on how much output you produce or how often you want to do it (I liked to keep an empty bag when I was at work so I would empty it more frequently than say if I was at home on the couch all day). The bag sticks to your skin with a really strong adhesive. You generally want to change the bag every 3-5 days. Skin care is important, you really want to clean your skin and I would always apply a barrier on the skin that was in contact with the bag (a nurse will show you how to do this if you decide that is the way you want to go).
You cannot control your output, your body does. You can’t even tell when your shitting most of the time unless you feel the bag filling up. Sometimes your stoma will even make fart noises. If you choose to get a J pouch, most doctors make you wear the bag for at least 3 months. I wore my bag for 9 months because I wasn’t in a rush to get another surgery and I actually liked the bag. I never had a stomach ache, never had to sit on the crapper, never really had any major issues with the bag. Your stool consistency will go from almost like a paste to basically water. You will not be able to smell anything unless you open the bag or have a leak somewhere. You will sometimes have to burp your bag. This means the bag is filling up with gas too much and it looks like a pillow, so you open it and let the air out. This will smell. A lot of bags have charcoal filters on them that help with this, they let the gas out but generally after a day or two with that bag, the filters will stop working.
Anyway, hope I answered some questions, I think I threw way too much at you than you wanted to know, but I hope it kind of gave you an idea of how things work. I hope you find relief soon weather it be surgery, fecal transplant, diet, drugs or remission. But I can say that I am very happy with my decision and would do it all over again! Good luck!
HI jordan one thing about the bag that I havent read about the bag if you eat litely or not after 5-pm the bag will almost stay empty and you can get a great night sleep!
Hi Blake,im 34yrs old lady,ihv UC since iwas 13 daignose at 16,on 7th aug im finaly getting a liproscopic proclectomy n creating of j pouch,and you are one of those who inspire me.ihope il b happier wt m stoma fo few weeks n ya able to hv milk, icecream yumyum:-)cream.im looking forward to my surgery now that you make it so clear,well evn after m pouch works evn if it means to poo 6/7 times its way better thenn bleeding n not able to control:-)we pee dat much nywaz.thank u, n to adam,curtis,emie,megan n all d ucer who makes me positive,ihope all goes well by God s grace
Thanks Colney, that means a lot! You’re absolutely right, I’ll take 5-7 quick and easy trips to the crapper a day over 15-20 bloody shits any day! Eat that ice cream girlfriend! I hope surgery went well and that you are recovering as planned.
Hey Blake, I don’t really know if someone asked this, there’s a lot above to read. I’m considering getting my colon removed due to my ulcerative colitis. I’m 18 years old. Its gotten pretty bad within the last few years. I want to know a few things about the bag… Do you feel the poop coming out? Can you control when you poop or does it just happen? Can you go to the beach or anything and hide it or you have to wear long and loose clothing all the time?
Sorry about all the questions..
God Bless!
Hey Nicole, sorry about your situation, I know the feeling. No need to apologize for asking questions. You do not really feel anything when you “poop” while wearing a bag. You have absolutely no control over it when it happens or how much will come out of there. You will get a pretty good idea of how digestion works though. You will have times in the day where your stoma is not very active and those are the times you’ll want to change your bag. There were a few times I changed my bag when my stoma was very active and made things difficult and messy. As far as the beach goes, there are belts you can wear that will help conceal an ostomy bag. I wore the bag for 9 months, I never went swimming during that time so I dont have much experience, but I have seen products out there for beach goers. There are even bags that are made for people who swim or are trying to conceal, they are much smaller than your regular bags. If you’re really thinking about surgery, I want you to know Im very glad I had the surgery and am pleased with my pouch and my life again. I would do it all over again. Good luck to you in whatever you decide.
Hi Blake,
Glad to see you still get on here. It’s been awhile since I have. I am scheduled to have my takedown in two weeks, FINALLY! Its almost basketball season and time to start coaching again. I had a scope and a CT scan of the pouch about 4 weeks ago midway through the wait with no issues found so Im sure the barium enema will be a breeze. I am so ready to get this bag off me and get on with it. I finally got the darn thing under control and no more leaking then for some stupid reason the wafer came loose on my way to visit my daughter in college twice in the same day WTF!!. Thank goodness I did not forget my bag full of goodies and extra clothes. If there are 2 things that I can get across to people that have the same 3 step as we have it is to never ever ever and I mean ever leave the house without your ostomy supplies and extra clothes and when you go for your CT scan and enema before takedown make sure you tell the tech that you have no colon or they will try to shove the large tube up your ass which is a major no no. This almost happened to me at my scan and I have heard that it almost happens often. I hope all is still going well for you, I am felling pretty good now and just want the takedown and this shitty loop ileo to be gone for good.
I will keep you updated after the takedown.
Mike H
Hi mike h had a simalar incident with my bag coming off wow it was inbarassing to say the least an I was on a date im just want to forget that evening right!
Blake,
Your story mirrors mine, up to surgery. I am 34 and 4 days ago, after a colonoscopy, was told by my dr. that it is time for surgery, after 8 years of being diagnosed with UC.
My question for you is, what medication were you on after surgery? and what meds are you currently on?
I have been on the same meds as you for 8 years now, 4 years on Remicade. I know these drugs have had serious effects on me, depression, high blood pressure, irregular heartbeat, ect. ect.ect. and am looking forward to getting off the meds, probably more so that dealing with “running” to the can 20 times a day.
Thank you for posting your story.
Hey Richard,
Wow! After 4 years of Remicade your still going 20 times? I think I would definitely consider this surgery. I don’t know how you’ve made it this long. Remicade didn’t work for me so even though I was kind of forced into surgery, I’m glad it happened that way. I didn’t have to struggle with the question for years like yourself. Currently, I’m on no meds for anything related to what I went through with UC or surgery. I am going through some bronchitis right now so I’m taking meds for that, but it has nothing to do with UC. I don’t depend on any medication and I love that fact. Please read my updates. Forgot what they are called but I just wrote one a while back after my 1 year anniversary with the J pouch. I’m feeling great, except for the bronchitis… cough cough! I think you should listen to your doctor, or at least get a 2nd opinion about it. Good luck bud!
Hi Blake! You been inspiration to all,i was diagnosed w/ pancolitis,n right now im still having my symptoms, with severe rectal pain, im on asacol, rectal n oral pill,n right now they put me on remicade, i experience a lot of joint pain,but my GI dr. Recommend me to consult a surgeon,i was only diagnosed this summer, but i was so miserable with my condition,just wanna asked what kind of procedure n how long the operation,did you feel anything or pain right after your surgery? Im freaking to death to consult a surgeon, but when i read your stories, its gives me an inspiration that life will never be end, there is life under the tunnel.,Thnk you n hoping for your fast recovery.
Hello Madecena,
Thanks for reading. Yes, there will be pain. Everyone is different, but I didn’t think it wasnt that bad. I think I thought it would be a lot worse than it was. I would urge you to talk with a surgeon so you can see what they have to offer. I had 3 surgeries in all over 2 years. I now have had the J pouch for over a year and I am very glad I went through with it. I’ll never forget how miserable I was with UC! I wish you luck!
Blake,
I’m new to the subject of the colon and the colostomy bag. I actually never knew anybody used bags until last week. My 4 year old son was in the hospital with severe constipation, and after a clean out and examination, his GI Doc told us he needs a bag. This will give his colon a temporary”rest”, however, he may need it for more than a year. He has not been officially diagnosed with anything so hopefully it works. Now I’ve been asking people if they know anyone with a bag, and all are older adults. You have a youngster and have been through this procedure, so any advice for our little guy would be helpful.
Thanks for posting your story and engaging people to tell theirs
Hey Paul,
First off, let me say I’m so sorry this is happening to your son and your family. It’s definitely hard to see your children struggle with anything, let alone something like this. Hopefully whatever treatment he gets solves the problem with the constipation. To my knowledge, there are two different types of bags, colostomy and ileostomy. A colostomy bag would hook up with the large intestine/colon while ileostomy (what I had) is hooked up to the small intestine.
I don’t know this as a fact, but I would believe that a colostomy bag may be a bit more convenient to have because your stools would still be traveling through part of your colon which would make them more formed than having an ileostomy. With the ileostomy, the stool is often pretty watery. This does make emptying the bag pretty easy though and more formed stools may be harder to get out of the bag. Either way, they are both pretty much the same I would think other than that.
The good news is that I did feel much better after getting the bag as I did prior to getting the bag. I imagine your son probably doesn’t feel good being constipated, so he will probably feel better. The other good thing is because he is only 4, he probably won’t be too bothered by body issues that a lot of people go through with getting bags. It should be pretty easy for him to conceal and I wouldn’t think that he would have a whole lot of waste going though it cause 4 year olds don’t eat much anyway (if he’s anything like my son who is a picky eater).
I think this may be a bigger challenge for you as a parent. You will most likely have to be the one to change the bag for him, empty it and care for him. You will want to get familiar with how to change bags and how to keep the skin from getting too damaged. Atleast he won’t have any stomach hair that needs to be shaved. This was a problem for me as the skin is pretty sensitive from having adhesive on it all the time and shaving sucked! If he needs this procedure, I’m sure they will set you up with an nurse that will specialize in ostomy bags. I’m sure they will set you up also with an at home nurse to come help for a while until you guys get the hang of it at home.
I’m sure your son will have a ton of questions for you as to why he has to wear the bag all that stuff. Just be strong and positive for him and I’m sure he will be fine. I’m very interested into finding out what happens with him so please keep me updated.
Just so you know, I don’t know if you saw any of my updates, but I have now had the J Pouch for over a year now and I’m doing great, back to pooping out of my butt like everyone else. The way the body recovers from something like this is almost magical. I’m 32 and I can still do all the things I used to do so I am very grateful for this. No doubt this will be a challenging time for your family, but your son will bounce back like a rubber ball. I wish you, your son and your family all the best!
Hi,
I have had 1 foot (12 inches) of my bowel removed due to bowel cancer on 16th December 2013 so I am 3 weeks post surgery. My cancer was situated just 3 inches inside my rectum so it was only the last foot of my bowel they removed and rejoined.
Can anyone please help me to get my bowels right again.
I seem to be on the toilet constantly with ‘sludge’ passing through. I am constantly incontinent and had at least 10 accidents yesterday. I no longer have the urge to go to the toilet, it just seems to keep coming without me having any idea when. There is no one movement daily like I used to have, I now have almost constant movement. I have started taking today 1/2 imodium tablet in the morning in the hope this will firm things up enough for me to leave the house.
I am desperate for any advice from anybody who has gone through the same thing I have and what worked for them.
Please can anyone help. I have to get back to work before we lose our house.
Tracey
I’m surprised that in couple dozen replies I saw nobody mentioning a nicotine patch to seriously relieve symptoms of UC or any IBD.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2014383/
If you don’t believe me. the pity is, I’ve known about this for decades – nicotine PREVENTS this kind of thing.
My husband has had uc for 6 years he’s finally getting the surgery and we can not wait! Reading stories like yours gets him so excited at a somewhat normal life! Anythi he better than having uc! How soon after did you start gaining weight? He has lost so much and he hates it! Not even talking about muscle just fat in general. After some time he will go back to the gym because right now it does nothing for him.
My husband has had UC for 10 his now on remicade and now they are doubling his dose… He doesn’t want to have the operation he believes that if his ass hole is gone he can be the biggest ass hole ever lol jk… His concerns are is there an odor when you use the bag how often do you change it does your insurance cover the bags or do you reuse the same bag… His also afraid that intercourse won’t be the same for us… Does it get in the way… I don’t know i wan him to get but he prefers to die before he gets that I told him it isn’t fair and that his more depressed now because his gained weight because of medication having accidents…
Hi, my husband had his colon and rectum removed about 2 years ago, and we could not find any website or group that he could connect with in order to speak and share with others who had a similar experience ……; I was always very upset that in retrospect he did not get a second opinion about doing such a massive surgery…he had ulcerative colitis…..when he first had symptoms during 2008 or so….he went into remission and then it came back…(couple of years later)…; …..the gastro doctor told us it was a bacterial infection….anyways….then one night his colon burst and he had emergency surgery….; supposedly in 8 months or so…..they were to put back his colon …..but it wasn’t advised after a colonoscopy …because he…had minuscule polyps that may develop into cancer….that was what we were told…; so we went into Manhattan up to Mount Sinai….and spoke with a top doctor…and he recommended the surgery….; and I often think that we should have gone for a second opinion….anyways….would love for him to connect with others who had similar experience…..; ….he is strong now and doing well….but unfortunately he developed a hernia over the stoma….but he deals with it….; ….I hope we hear back….good luck and happiness to all !!
BEFORE having colon surgery I highly recommend working with a practitioner to do all that you can to avoid it. There’s much that we do know about UC. Mainly that there’s an issue with the gut that can usually be addressed with diet, proper digestive support, and elimination of things that are causing the inflammation in the colon/GI tract in general. The colon/large intestine is vital to our health so we want to do all we can to preserve it. Did you know the colon houses most of your microbiome/healthy bacteria, and that 80% of our immune system is located there? Also, those gut bacteria eat fibrous foods we ingest and make important hormones and other vital nutrients from them. If you’d like to learn more about working with a practitioner, please reach out to me at sensiblysavage.com. I’m a Nutritional Therapy Practitioner certified by the Nutritional Therapy Association and have/do help many people with digestion & weight issues, as well as cardiovascular, diabetes, and much more. If you can, you should always reach out to someone who can work functionally with you before having to go the conventional route. We are typically able to help people keep their gallbladder, colon, kidney, etc with simple foundational protocols. It’s what we love to do. Good luck on your wellness journey!