Hello again everyone. It’s Blake, 31 years old, I just wanted to complete my story started back in February 2011 of UC, colon removal, life with an ostomy bag, J Pouch creation and finally, pooping out of my butt again. I had a J Pouch that was done in 3 steps or 3 different surgeries in a 9 month period of time. J Pouch surgeries are normally done in 2 or 3 steps. I chose 3 steps simply because my surgeon told me there is less risk for a man to become impotent with the 3 step (for you young one’s out there that means you can’t get a boner anymore) and my wife and I decided to go for that one in case we want more children. I felt I needed to clarify what impotence means because I was talking to a younger guy one time about a J Pouch and he had no idea what I was talking about when I told him I was scared about the whole impotence possibility.
No UC in sight after a 3 step J Pouch surgery.
I don’t want to really get in too much on why I made the decision to have the surgeries. I’ll just say my UC was really bad and removing my colon was my last resort. I don’t want to discredit any remedies you often read about on this website. I just didn’t have luck with anything I tried and I tried a bunch of stuff.
I got my colon removed on December 6th, 2011. I woke up from surgery in a very good mood actually. The meds they put you on are the finest quality. My mood would change shortly after seeing my stoma for the first time. Getting a peak at your intestine for the first time sticking out of your body is pretty impactful to say the least. That is supposed to be something that should stay inside your body, but you learn to adapt until it becomes normal, but it does take a while. After the first surgery I did have a great feeling of relief knowing that I would not need to sit on the crapper anymore. That was a good feeling and even though I was in a lot of pain at the time, I still remember that made me very happy. There was a lot of pain after this surgery. You’re stomach muscles are cut through, so getting out of bed, or off the couch are very hard tasks at first, but the body is amazing and recovers pretty quickly. They give you pain meds that help out with this so I was feeling much less pain after two weeks.
Life with an ostomy bag takes some getting used to. How was I going to wear my clothes and hide this thing? How was I going to go to the bathroom in a public place? How was I going to change my bag without getting shit all over the place? How was I going to get it on with my wife? When I first returned to work, I used to think that the guy in the stall next to me could hear me emptying my bag, wiping it clean and clipping it back together. But I soon learned to not care. At least I wasn’t the one making the huge farts and splashes dropping a load in the toilet anymore. Wearing my clothes wasn’t even a problem. I got an ostomy belt that helped to conceal it, nobody even knew I had an ostomy bag except for the fact that I told everyone that I had an ostomy bag. I’m not good at keeping secrets. I felt better that people I worked with knew what was going on with me, just made things easier. Changing an ostomy bag wasn’t easy at first. An ostomy n urse walks you through the steps while you’re in the hospital, and they set me up with an at home nurse for the first few weeks after the surgery and she would make home visits to help me out. You’re supposed to change your bag every 3 to 5 days or when you feel it’s necessary. You never know when your stoma (intestine that sticks out your abdomen) was going to start spewing hot turd lava so this made it tricky. I did make quite a few messes, but I eventually got good at it and that wasn’t a problem either. I found out that if you eat a few marshmallows it slows things down and there were also certain times of the day where my stoma wasn’t very active. As far as the whole love making process, my equipment still worked and I was able to enjoy a few intimate moments with the wife so I was happy. I say a few because we have a 3 year old son and he still sleeps with us so he was more of an obstacle for us than my new ostomy bag. For any future parents, don’t ever let your child start sleeping in your bed, you will never be able to get them out of there!
I was able to keep a regular gym routine even with an ostomy bag. One of my hobbies since college has been weight lifting, nothing serious, just like to push myself. I got back to lifting pretty heavy weights in no time (against doctor’s orders). I started going to the gym 2 weeks after I had my colon removed even though I was told not to lift anything more than 10 pounds for 6 weeks. I was eating pretty much anything I wanted (anything gluten free because I have Celiacs = allergy to gluten). Things were actually good with the ostomy bag. I never once had a stomach ache, cramping, blockage, gas pains, blood or constipation. I could even go on a run with a full belly if I wanted to. I could lay on the couch and be extremely lazy for long periods of time without getting up to go to the bathroom, which I could never do with UC cause I would be running to the bathroom every 15 minutes. I could do long road trips without a care in the world. When I had UC, I remember thinking “this turd ain’t gonna wait another 42 miles for the next rest area.” There are a few advantages to wearing a porta potty on your belly. I didn’t have to take a bunch of drugs anymore for UC either. I did take Metamucil fiber to thicken my output up and would take Imodium every now and then to slow movements down. Sure, wearing an ostomy bag is not anybody’s number one wish in life, but it far outweighed the misery I was going through when I had UC.
There were things I didn’t like about wearing an ostomy bag also. You have to empty it quite frequently and it fills up pretty fast right after meals. When I was at home, I would just take a knee to the toilet and empty the bag then rinse it out with water cause I liked to keep a clean bag. When I was at work I would sit on the toilet because I didn’t want people wondering why there was a guy in the stall on his knees. I didn’t want people talking. I was also pretty timid about taking my shirt off in front of people which was new to me because I’d never been shy about that before. This meant I spent the whole summer with no pool time. When I would change in the locker room at the gym, I would do it quickly because I didn’t want anyone seeing my bag. I guess you could say I wasn’t as confident as I used to be. My skin would deteriorate from wearing the bag 24/7 and would itch a lot. I used to scratch the shit out of that area, sometimes till I bled. It was hard to treat, but there are things you can do that help and I eventually got to the point where that wasn’t an issue either. Many people do swim with ostomy bags, there are belts that conceal, I just never got around to that.
There was a surprise I didn’t expect after getting my colon removed. I still had to pass stuff out of my anus about once a day or once every other day. Turns out that is normal. I still had a rectum at this point, which was still diseased with UC. It would still produce puss and sometimes a little blood even. After I told my surgeon this, he assured me that this was normal and not to worry. But this wasn’t too bad and was easy to control. Nobody ever tells you about this so you may be quite astonished when this first happens, but it’s normal.
I had my second surgery on June 26th, 2012. During this surgery, they created my J Pouch and removed my rectum (or most of it). They went in through the same incision as the first surgery which is very close to a C-section incision. I got a new stoma with this surgery, a much crappier version of the intestine sticking out of my abdomen than I had with the first surgery. This stoma produced a lot more output because now food was traveling a much shorter distance because part of my small intestine was being used for the J Pouch and this portion of my small intestine was blocked off and did not have any waste go through it. This surgery was a pretty rough recovery, much like the first surgery. My incision became infected and they removed a few staples and I had to pack the incision with gauze twice a day for 3 weeks. I also became allergic to narcotics and broke out in hives when I took my pain meds. So I stopped taking pain meds and this made recovery a bit more horrendous. I was able to get around pretty good after a couple weeks, the pain went down and I started back with my gym routine (after all 3 surgeries, the 2 week marked the end of pain and the start of feeling better). I took 4 weeks off work for this surgery. I probably could’ve returned earlier, but I have plenty of sick days at work so I took them.
I had a lot of problems with keeping the ostomy bag on this time around. My stoma was flush with my skin, so keeping a bag stuck to my skin was nearly impossible and I had a lot of leaks and a bag even came off one night when I was sleeping. I woke up with a puddle of shit on my belly and sheets. This was gruesome. I did find a bag that finally started working and sticking. It had a concave base that helped bring the stoma out, made things much better and I stopped having leakage problems.
My final surgery was August 21st, 2012. This was the day before my son’s 3rd birthday. I felt bad because I was in the hospital for his birthday, but he came to visit me and we got him a sweet police car power wheel for his birthday so he wasn’t too upset. The last step was to do what’s called a reversal. This was my last day with my poop bag. They hooked back up my internal plumbing. As far as the pain involved with this step, it was very little at first. I woke up from the surgery and I couldn’t even tell I had surgery. I took a couple days for the pain to actually kick in and when it did… I felt it. The first 2 days after surgery were great, not much pain for me and nothing in my system to poop out because they wouldn’t feed me. I did around 20 laps around the hospital floor about 3 hours after I woke up from surgery. The doctor told me not to for liability reasons, but I ignored him cause I felt so good. My first trip to the bathroom was the second day after surgery. It looked like soup broth, but that was okay because that’s what I had been eating. I would go anytime I felt anything back there because they tell you not to hold it. I could not sleep at all. The gas pains were tremendous. It actually hurt and was really uncomfortable. I sharted my pants a lot the first week after this last surgery. I ended up just stuffing toilet paper up my butt a few nights in a row because I was so tired of walking to the bathroom every 5 minutes. The second week was a little better, but still not good enough. I was wondering if I made a mistake and was actually missing my ostomy bag. I ruined a lot of good underwear.
The gas pains or tremors that I feel are getting less frequent and easier to deal with. If you’ve ever read anything about J Pouches you’ve probably seen people talk about the infamous butt burn. Well, it’s a very real thing and I’ve experienced this a lot lately. I want to thank the makers of Calmoseptine lotion cause it’s literally saved my ass! I apply a dab of this stuff to my brown star after each dump with a surgical glove and it relieves that painful, burning, itching sensation. From what I understand, this should also get better.
I’m writing this story almost 4 weeks from my last surgery. I have felt pretty darn good the last week or so. I even took my son to an air show yesterday. We were gone from the house for 8 hours, I went to the bathroom once this whole time. It is much easier to control my movements than when I had UC. My underwear is in better shape, my sleep still sucks, my appetite is back and my ass is raw. I still have a gaping hole where my stoma was, for some reason the surgeon decided to let it close on it’s own. It doesn’t bother me, it just looks like I’ve been shot with a shotgun slug. I’m sure it will close up soon. After 3 surgeries, my lower belly looks pretty beat up. I used to have a flat stomach, now my stomach hangs over my waist line and the right side of my stomach pokes out farther than my left side. It’s probably only noticeable to me though. They tell you not to measure you progress with a J Pouch in days or weeks, but in months. My outlook is getting more positive. I’m feeling that I did make the right decision. I’ve probably been averaging about 6-8 bathroom trips a day for the last few days which is way down from the first few weeks and I’m happy with that. Ideally, I’d like to get to about 3-5 a day, but that’s just going to have to take some time to get there. Overall, I have very good control. Sometimes I have to clamp the brown star really tight to keep anything from spurting out during a spasm, but it passes after a few seconds and I’m fine. I’m trying to hold it in more now so I can stretch the J Pouch out.
I wanted to also thank my wife for all she’s done for me the last year. I really did marry a wonderful woman. Without her, I know I wouldn’t be as successful with all that I went through. She’s been my nurse, my secretary, my maid, my cook and my hot wife all at the same time. She was always following up with the doctors, taking notes, reminding me about appointments, getting my meds, cooking, cleaning, making sure there is always plenty of toilet paper. Also, big thanks to my parents and sister for helping out with my son. They made the 3 and a half hour trip for all 3 surgeries and stayed home with my son so my wife could be with me and stayed even longer to take care of me as my wife went back to work. I’m a very lucky man to have such an awesome family!
I’m confident things are going to continue to improve for me and very happy that I’m finally over with all of this. Time to start having fun again and not worry about a faulty colon! I’m going to enjoy my last 2 weeks off work, probably practice a few pull ups so I can beat Adam in the pull up challenge. Take care everybody!
Where I’d like to be in 1 year:
I would like to be taking 3-5 dumps per day, sleeping through the night and not having to apply cream to my butthole anymore.
I take Metamucil to thicken my stools about twice a day and that’s about it.
written by Blake
submitted in the colitis venting area
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).
Wish you all the best Blake!
Thank you for sharing your story, good luck!
Thanks for this story it has really given me a lot of confidence.. I also had this surgery but mine was as a result of growth in the colon…..I do experience pain and itching around my anus after every bowel movement and need to apply cream …but soo happy I don’t get to poop and see blood in it again….I had mine surgery 5th August 2016..although its not up to a year..am still thankful coz I feel am recovering …..although there are some challenging I believe with time everything will be perfect
Thank you for sharing your story and being so honest! I hope you continue to heal quickly!
Thank you for sharing your story Blake I am waiting for my second surgery coming up quick with my first surgery it got infected as well and I went through the same thing with the packin I scared to death but really don’t want to live with thr bag any longer good luck on ur recovery
Did You Reach Your Goals ? How Many Times Are You Going Now ?
so glad you are doing good.
Thanks Trent, now start practicing them pull ups bud!
Good stuff! Congrats! I can safely say in my personal experience with a J-Pouch that I can sleep through the night, can hold it as long as I need to and can eat whatever I want. It’s awesome and it’ll get better!
Thanks Curtis! I remember reading your story a long time ago about your J Pouch and getting inspired about it. Good to hear from you and glad you’re doing so well!
Sounds like you’re over the worst of it. Congratulations and happy healing.
Hey Blake,good to hear ur doing better,I just had my take down on 9/11 my story is pretty much like yours,still taking a lot of dumps,and the pain is getting better slowly,you were right about the bag no belly aches at all if you have any new info that would be great,or you could shoot me an email,at email@example.com,thanks bro..
Thanks Rico! Yeah, my J Pouch keeps getting better and yours will too. I had a really good day today, only had 5 trips to the pot so far and the days almost done, my best day so far!
Wow Blake! Thanks for the long awaited update…keep on keepin’ on and healing. You kick some serious UC butt!
Good luck with the pull up challenge – not that a think you need it! :-)
Best and good health, Shelly
Thanks Shelly! Looks like I have some fierce competition in the pull up competition. I hope I didn’t bite off more than I can chew.
One heck of story man! Your definitely a trooper! I hope everything is going great and it’s a speedy recovery!
Thanks Johnnydrama! Good luck to you in the competition. Adam’s been talking mad crap about you saying that he’s sure he’s going to beat you. Haha!
Hi my brother had the last stage of the surgery done 6 days ago – all went well but since yesterday he is in strong pain and vomiting …- his Dr wants to do the scan today! I am very worried – any body had a similar experience!
Congrats on your successful surgery(s) man and thanks for sharing your recovery story with us all! It’s helped me a great deal knowing that someone else has gone through this and kicked it ass! I’m going for my surgery in January. I’m doing it in 2 steps and the surgeon said that since they’re doing it laproscopically, there’s a lesser chance of impotence but an increased risk of infertility. That’s fine with me considering that I already have 2 kids. Still though I’m scared shitless! Well maybe not shitless or I wouldn’t need the surgery…lol! Well take care and keep us updated with your progress goi g forward!
Hey Joe. I was really scared about the whole impotence thing as well. Atleast you don’t need to worry about your fertility with 2 kids already. I was really scared after my 2nd surgery because I didn’t get an erection for 2 or 3 weeks after the surgery. But then, it just woke up one day. So don’t worry yourself too much if this same thing happens to you. I almost worried myself sick about it, but all worked out in the end. Good luck in January, take notes/pics and write a story, I’d put money on it that you’re going to be happy with it in the end.
Wow! What a story. Thanks for sharing and for being so honest. I wish you all the best! I hope your health continues to improve. Good luck with the pull up challenge!
All the best,
Thanks Tracy, appreciate it!
Oh Blake…at last!! I so missed your writing. You have such a great sense of everything, including humor!
I could not be happier for you, my friend. You have a great klife now. One without all the constant ‘turd’ (as you so eloquently call it) worries. You must be over the moon!!
I still want another update…in a few months. I just know you are going to be right where you want to be by then.
You are one GREAT guy. Your wife is one GREAT lady!
Cheers…and a very happy life together…just gotta get the little guy outta that bed that’s built for two!!
great LIFE…not klife…I am typing like a son of a gun, I was so excited by your update…sorry about that!!
Thanks Bev! Yes, the wife and I need to tighten the belt and make our son sleep in his room, I agree. But we haven’t been tough enough to do it because you would think we were locking him in a dungeon by his screams and cries every time we’ve tried to get him to go to bed in his room. We both give in after an hour of that. I’ll post again sometime to let you know how I’m doing. Hope you continue to stay in remission, good luck to you!
I hear that on the kid thing! Our son was more like screaming like he was in a torture chamber!
i really liked reading this and looking at the photos. it helped me see what surgery is like since it could happen to any of us. you are right in that you have an amazing family! i hope you have a pain free life after you are healed. i’m sure your son is happy to have his daddy back!
Thanks Joanna. I made sure we took photos to document this stuff because there is a bit of a lack of pictures when you try and look J Pouch’s up on the internet. Hopefully, it makes it a little less scary for people… or maybe I made it even more scary. Haha, who knows.
Thank you for sharing! This was very inspirational. It’s good to know what the process is just in case I have to go down your road. I wish positive wishes your way and hope for a speedy recovery. I’ve had UC for 10 years and I’m 34 years old. This has been one hell of a ride. So thank you for the story. It brings me strength. And also major props for your wifey.
Thanks Trina! Wow, ten years is a long time to battle UC. I guess I’m lucky I had such a bad case and only suffered for a little less than a year with UC. Atleast it made me come to a final solution earlier rather than dragging it out. I hope you’re able to keep UC away and wish you luck, but if things come to the worst case scenario, just know it’s not that bad as we imagine it being.
What a great follow up! Thank you for sharing. I’m so glad your son is still young enough to forget that you were sick. Your family is so awesome for coming to help you. I have to read your story again, it was so inspirational. You’re my light at the end of a long, dark tunnel. Glad to know you’re not an oncoming train. Please give us an update in a few more months when you’re feeling even better.
Hey Mrs Huds, me and my son just got done with like a two hour Wrestle Mania in the living room. He’s definately happy to have his dad back and we’re having fun. I hope your husband is recovering well and I’m sure he’ll be getting some strength and appetite back real soon. Good luck to you and your family and keep us updated!
Thanks Blake for sharing your journey – I’m 27 and will be a year next month I was diagnosed. I have been afraid of surgery but not after reading this. I had my family and husband read this to show them what happens. I really appreciate you posting this – your honesty is greatly appreciated and I wish you and your family the best of luck in the future!
Thanks Jenny! That’s exactly why I wrote this little story. I wanted to settle some fears for people and families so they don’t always think they’re headed towards a dead end road. That’s what I thought at one point and I’m sure most of us that use this website feel that way at one time or the other. Good luck to you!
Hey Blake were you in the bathroom 20 plus times a day?after your takedown?or did things get better everyday?I know the pouch needs time to start working,I just can’t take the torture anymore,it’s been a long road with the surgery’s and sleepless nights,it’s just been a crazy ride,thanks man…Rico ,40 years old,2 years with uc.takedown on 9/11/12.
Hey Rico! Yes!!! I would say the first couple weeks after takedown, 20 plus bathroom trips was typical for me. Most of these trips to the bathroom were for gas though, you’re probably having terrible gas pains. This is disgusting, but I got so sick of getting up to use the bathroom I would just stick toilet paper up my ass, wait for the next fart, take that out and throw it away and stuff some more toilet paper back there. Thanks God that stopped after about 2 weeks. I noticed slight improvements week to week. I’m about 5 weeks out now, the gas pains aren’t near as bad as they were in the beginning, but I still do get them. Seems like I can only fart laying down. I’m trying to work on my sleeping also. I’ve been pretty bad at making myself go to sleep because I am taking 6 weeks off work so there is no need to go to bed early. Most nights, I go to bed around 3am, up around 4am, 7am, 9am to use the bathroom. My sleep still sucks! Hopefully I can get to where I only need to wake up once a night. It will get better bud! You and I need to practice some patience. Good luck!
Hi Blake. I love your story. you have been through so much, but you have a way of phrasing things that absolutely cracks me up, like this: “….But I soon learned to not care. At least I wasn’t the one making the huge farts and splashes dropping a load in the toilet anymore..” I love your candidness about bodily functions. I think it’s important to keep a good sense of humor in all of this – helps for healing. I am confident that you will be getting better sleep as your body heals. Here’s to sleep and more comfortable farts!!
Thakns Lisa! We can’t let go of our sense of humor or we’d go nuts! I’ve always had a good time talking about bodily functions.
Hey Blake are you feeling better than you did on your 6th week in,I know you on your 9th week I just passed my 6th I’m in the can like 8 to 12 times in 24 hrs,let me know thanks,and nice on the pull ups..
Yo Rico! What’s up J Pouch bud? Congrats on just passing 6 weeks, time seems like it’s flying, you made me realize I’m a little over 9 weeks out. I was thinking in my head on the way home from work trying to count how many times I think I go a day. I think I am about a 6 – 9 average. It depends on what I eat, but I do tend to eat a lot. I haven’t been really focusing too much on how many times I’ve been going, but how great I’m feeling and how relieved I am that I haven’t had anything close to the horror stories we all hear about J Pouches. Knock on wood! I go usually 2-3 times a day while I’m at work. It’s a 9 hour day, so that’s not too bad and it doesn’t seem excessive.
One thing I did was got a bidet. You know the toilet seats that squirt water up your ass, I got one. I heard a lot of J Pouchers liked them and they were having a huge sale on them and I just decided to get one myself to see what all the fuss was about. It’s pretty awesome, never used one before I got mine, but now I like it so much I try and hold it till I get home so I can use it. I got one that washes and drys your ass. No toilet paper necessary. Even has warm water and all these other functions I don’t really use. I just checked and they’re still having the sale if you want to check it out.
It was kind of pain in the ass because I had to hire an electrician to install a GFCI outlet behind my toilet upstairs, so that cost another $180, but I think it was well worth the investment.
I do still wake up 1-3 times a night to use the bathroom so that sucks. I think last night was the first time I slept for like 6 hours straight. I also have some slight leakage at night. My wife got me to start wearing women’s pads at night (for women’s time of the month). They’re great, a lot better than diapers! She got me ones with the wings, that was key because they’re wide and long, and if you have any leaking, they’ll save your underwear.
How have you been feeling otherwise? Are you glad you got the J Pouch? Let me know bud, take care!
Damn Blake your crazy bro,and real funny,yeah im glad I got the jpouch cause i am feeling better than I did with uc but it still kinda sucks that things will never really be the same,you still kinda got to look for that bathroom,I’m from newyork and getting in and out of the city is tough and could take hrs I used to hit the can like once a day sometimes every 2 days so it’s a big change but these are the cards we were delt so I know we got to make the best of it,especially for the wife and kids,we can’t let them down,I’m a big time fisherman for striped bass on long island and that kinda sucks when your on the boat and you got to go,anyway keep in touch glad your doing better each week bud…..peace out.and thanks for the info.
i am one year 4 months out of the jpouch takedown and i still cannot control my bowels
i take 1 tsp tinture in am before work then eat bananas potatoes type thickening food for breakfast but like clockwork at 3p i have uncontrollable liquid diarrhea that i cannot stop – iwear 2 diapers each day to work then i have to drive home covered in crap. the remainder of the day is running to toilet or it comes out on me sleep every few hours then i am wakened to the feeling of it coming out
i am scared this is my destiny yet i WILL NEVER go to the bag again
can someone tell me if they have the answer? i do gluten free dairy free no sugar no alcohol only natural foods and thickening ones yet i STILL have liquid D on the daily. Tinture keeps it in but i dont want blockages so i only do it the one time i am sick of being like this
Thank you for sharing your story I’m 23 had subtotal coleftomy in march as an emergency for chronic uc now waiting on a reversal and pretty nervous about what’s to come!
Thanks Rachel! I was very nervous as well. I got very used to life with an ostomy, was pretty scared to give that freedom up, especially with all the horrible things you read on-line about J Pouches. Everyone is different, but this isn’t anything you can’t handle. Your J Pouch will take some time for it’s functions to improve, but I don’t think it’s all that bad. I’ve had much improvement since the first week and am positive things will continue to get better and better. Good luck to you!
thanks for your inspiring update! I remember reading your decision and thinking OMG! What am I going to do about the flare I’m in and nothing is working. Can I, should I, am I giving up? The mind is an awesome thing that tricks you into thinking things aren’t so bad…we are kicking uc..diet, drugs, meditation, homeopothy…After my first post I read what I wrote and thought what the hell!!! mild uc? Who am I kidding….uc has taken so much of my life…
Just yesterday after reading your take down update my son and I went to the grocery store. Before heading home and had that feeling….Im not going to make the drive home… ( live in the country)..Better go back in the store and wait it out….my son waited in the truck…thank goodness! I was in there for over 30 min. achy, chills, pain, blood, all the nasty stuff…people come and go hearing me…Anyway that was the turning point. No more asking myself am I making the right decision, did I not try hard enough…
I said outloud one more week and no more of this…I’m taking my life back! Your story has helped tremendously as with Dawn’s. Thanks for the tips for requesting samlpes…I did not realize a home health nurse came to help out. Great news as my surgery is taking place 9 hours from my home. I will be taking 6 weeks off for both surgeries.
The road ahead of me is going to be different…not expecting the old me totally but a new me..One that has control over UC! Wish you the best recovery and a blissful nights sleep…Jill
My hubby just had the surgery (my story is in the wives/spouses section something about my happy husband). He is better. Not 100% yet, but he’s working on it. Please be glad you have a job to go back to. My hubby “didn’t get his contract renewed”. His whole job now, is to get better. He has the best home care nurses. Keep us posted. I know you’re going to be better after the surgeries. Don’t be surprised about the large amounts of liquids your ileostomy puts out. Just remember, you’re body’s defenses have been on red alert for so long that it has to teach itself that you’re no longer inflamed.
I remember when I first found out I had UC and thinking I would never be one of those people that had surgery, not me, I’m way too young/strong/healthy. UC really has a way of changing your mind when it gets bad enough no matter how tough you think you are. I’m glad you are taking 6 weeks off with both surgeries. I think you’ll be glad you did and it will most likely be more than enough time, but it’s nice not to have to stress about work when you’re trying to go through surgeries at the same time. I’m so thankful I have a job that allowed me time off also, not everybody is that lucky. Can’t wait to hear all about it, good luck Jill!
Blake, you and your family are TRULY an inspiration. My brother is just got his 3rd surgery. Your story gives us hope. thank you so much for sharing your story and inspiration!
Thank you very much Kelly! The first few weeks are pretty miserable, but it does get better. I’m 8 weeks out and feeling awesome. I’m really glad I got the J Pouch. I wish you and your bro the best!
Hi Blake, I am going for my second surgery in a couple of days. I am also having mine done in three steps. Question.. did the second stoma come out of the incision of where the first stoma did? I really hope they use the same incision.. I am slightly worried about that. I hope this one isn’t horrible but I am prepared for the recovery. Let’s hear it for pain meds. I am pretty nervous, but also ready to get this all over with. Thanks!
Hey Katherine. Yes, my 2nd stoma was exactly where the first one was so I imagine you will have yours in the same place as well, but you’ll probably wan’t to double check with the surgeon before you go under. My 2nd stoma wasn’t as easy to deal with as the first though and this is common. The 2nd one did not come out of the skin very much, making it hard to get a bag to stick. I would suggest getting a ostomy bag with a concave base if you have the same deal. It helps to bring out the stoma better. Once I switched to a concave base rather than a flat one, I didn’t have any more problems with leaking. Good luck, you’re almost there.
Bye the way, I think I’m almost 9 weeks out from takedown, I feel awesome. I would even go as far to say that I feel just about as close to normal as I remember “normal” being. I only have a couple issues here and there, but overall I can’t complain. I’m really happy I got the J Pouch. Let us know how everything goes and good luck!
Ouch, thank u for your story & a speedy recovery for you…I have been out of the hospital, close to a month now..to tell you I’m not feeling much better…I’m being treated w/ predazone & sulfazine, plus anemia. I reviewed doc’s papers today…I’m not sure if I have just acute ulcerative colitis, or crohn’s. I’m so confused…Looks like both…doc appt next week…never been so sick for so long…hoping I feel better soon…if surgury will help me get better, I may choose it…rather then just drag this out, with med’s.
This disease sucks ass! There’s no question about that. Hopefully you’ll get some sort of relief with the drugs. Write down your questions so you don’t forget what to ask the doctor. I would say get a colonoscopy if you haven’t already had one. Try not to stress too much over it cause that won’t help either, but that’s easier to say than to do. Good luck to you!
Just got home from surgery #2 of 3 and have some questions. This surgery has been much tougher on my body/mental state than the first one. I am so out of it, have almost 0 appetite, and just having a hard time dealing with this weird stoma. You weren’t kidding when you said this stoma would be more difficult to take care of than the first one. Mine is so flush, it’s hard to keep this bag on. I did get the convex one but it still doesn’t want to stick around my belly button making it hard not to have to change it almost every day. How often did you have to change yours after your second surgery? Any magical advice on how to make this thing stick better?
Also, did you notice blood coming out of your stoma after surgery? The doctors said I shouldn’t be alarmed, but it still seems a little odd. It’s not just a couple drips, it will kind of fill up the bag. They said it might be left over from surgery and just now draining? But I do not know.
I have my take down scheduled for Dec. 13, so atleast I have something to look forward to. I can not wait to have these bags off of me. Unfortunately for me, I did not seem to have as great an experience as some do with their bags. I just need this all to be over!!!!! Hopefully all will go well and this output will start to be more normal and I won’t be as stressed about whats coming out of my bag. When it’s slow it’ just makes me nervous.
Hope you’re doing well. Thanks for any advice.
That second stoma definately sucks. I do have some advice for you. Sounds like you got the convex bags, so that’s good. Do you have any belts yet? This was a big helper for me because the belt keeps constant pressure on that bag. The belt that I had was called a Nu-Hope. Here’s the link to their website – (http://nu-hope.com/products.php). This belt rocked, simple and effective. It’s kind of a pain in the ass to do all the measurements you need to order it, but not too hard. I used an ostomy supplier called Edgepark and they sold these Nu-Hope belts, they had directions on how to measure for your belt when ordering. I’m pretty sure this will help you tremendously. On the downside, it took them forever to ship me my 2nd belt. In the meantime, I would suggest just using one of the cheapo elastic belts like the Convatec Adjustable belt with plastic buckles. You will need a bag that has little tabs for the buckles to connect to if you don’t have them already. I would wear the belt the first couple hours after I put on a new bag, makeing sure I had a really tight seal. I would sometimes even wear the belt all day long for added protection and always had it on at the gym. I really like the Convatec Sur Fit Natura two piece system. Let me know if you need any more info on product numbers or types. You can also just buy an ace bandage and wear that in the meantime. I wore an ace bandage over my bag after the first surgery for a couple months, before I ordered my first belt.
When I would change a bag, I would just wash the skin around my stoma, shave (hopefully you don’t have a hairy stomach like myself, wipe down some protective skin barrier, and use the powder stuff in the really red areas. I would let that dry and then dab those areas again with the skin barrier, then put more powder on and repeat until if felt I had a good scab over the bad skin. I had a nurse tell me to layer that powder over and over and that really helped out. I would stand in front of a fan to help it dry quicker also cause I would try to be quick because you never know when you’re gonna start spouting shit all over the place.
As far as blood, I never had it come out of the stoma hole in my intestine, but I did see blood around the stoma hole, especially right after surgery. It was never a whole lot like in your situation. I’m thinking that is a result from you just having the surgery and I’m guessing that will improve, but I would definately call the doctor if you’re still having that problem after a while. Especially if you’re really filling your bag with all blood.
Let me know if you need me to be more specific or if you want any product numbers or anything. I hope you get those damn bags to stick cause nobody likes shitting their shirt. Haha! Take care!
Thanks for the tips. I actually did get a belt before leaving the hospital because I told the ostomy nurse I couldn’t go home without feeling more comfortable with the bag not falling off. Like you, I wore it for the first couple hours after putting a new bag on, which seems to have helped it secure a little better. I don’t think I can wear the belt for days at a time though, that thing is so tight! I know thats the purpose but ugh.
Another question, did you ever have problems with showering and this second bag wanting to kind of loosen up? I am going to talk to my home health nurse today, but when this one gets wet it’s like it wants to just slip off. I am trying to find something maybe that I can wear over all of this while im in the shower. Have you heard of anything like that? If not, maybe I will invent something and become a millionaire. I hate being scared to shower, its not normal.
Lastly, how are you feeling now? I guess it has been a couple months since your takedown? I really need to hear that this is all going to be worth it in the end, because right now I am having a semi hard time dealing with all of this. You are very positive, and I apologize if I am not coming across that way, it’s just really challenging for me right now. I think my mental battle is far more difficult than any physical pain I have right now.
Anyway, thanks again for sharing everything. It has been a tremendous help and I am so glad I found this website.
Yo Katherine! Definately invent something and get rich off it. That’s my first piece of advice. As far as showering, I never really had much of a problem with the bag trying to come off in the shower. It would if it was like day 4 or 5 of the same bag, but that’s just because it was about time to change the bag. I always took an air dryer to my bag after a shower to dry it off a bit. Maybe you just need to find a better bag. Ask your at home nurse, she should be able to help you pick something that works better. I don’t know what kind of belt they sent you home with in the hospital, but I still urge you to check out the Nu-Hope belt. I know what you mean about wearing the belt all the time, it does get a little uncomfortable after about 8 hours. I would wear it at work a lot, at the gym, and after I put on a new bag. It just gave me piece of mind that the bag would not just fall off at any time… which it probably won’t anyway.
As far as for how I’m feeling, I feel great and thanks for asking! Seriously, I find myself getting mad at dumb things a lot (like last night’s election results for instance) and I just have to remind myself of how damn lucky I am. The J Pouch has been great so far. The first couple weeks really sucked ass, but it’s been steady positive results ever since then. Sure, I still get butt burn every once in a while, my stomach makes some crazy loud noises here and there, I leak some nights when I’m sleeping, but the tradeoff for UC is one great deal! I would, without a doubt, do it again. I hope I’m not setting myself up for disaster by saying all these good things, something bad is bound to happen. Haha, I guess I still plan for the worst after having UC. But nothing bad has happened really. I think I may have a hernia or two, but I don’t really care about that now. Nobody can come out of these surgeries completely unscaved. My new normal is going to the bathroom about 5-8 times a day and 1 or 2 times a night. Looks like a lot, but it’s really not that bad. I used to go 15 to 20 times with blood every single time. I call that an improvement. Haha! As always, I’m writing too much. Let me know if you have any other questions, I’m here for ya!
Glad to hear you made it home from your second surgery. It sounds like you’re having a tough go at adjusting. My hubby had/is having a tough time too. He just had all of his plumbing reconnected. We liked the Hollister bags. His stoma actually stuck out and the Hollister pulled it out even more. We didn’t buy any, we asked the home health nurse for some. Ref 8512. We also preferred the kind that you can hook the belt to. We stopped using the paste and started using prep wipes and dried the area really well. Then just stuck the bag to the skin. We have 6 plus another box that we don’t need. If you want them, they’re yours. When I noticed his ileostomy putting out a lot of fluid, he drank Cholestryamine powder and took Lomotil. The combination thickened his output. Hang in there December 13th will be here before you know it.
I am going in for the second surgery soon and was just wondering what the hospital stay is like. How many days were you in after the operation. Do you wake up with as many tubes as the first operation?
Do you find that you have to empty the bag more with the loop ileostomy than the end?
Hey Chris. I guess you’re going in for the second out of 3 surgeries right? Yes, you will most likely empty your bag a bit more with the loop ileostomy. Mainly because your stools will be more liquidy. As far as my hospital stay for the second surgery, it was much like the first. I think I was there for 4 days after the surgery (so if you count the surgery day=5 days total). I was going to be let out after 3 days, but my output was too high and they made me stay. They won’t let you leave if your output is over a certain level because you will get dehydrated very quickly and end up back in the hopital anyway. They started giving me metamucil and lomotil to slow things down, thicken things up. My output was pretty high the first week or two, then I think your body adapts to it and things become more regular. Recovery time was about the same as the first surgery as well. After two weeks I was feeling much better as far as pain and energy level. My incision (which was like a C-Section) got infected after this surgery. I had to get the staples removed and pack it with gauze twice a day for 2 or 3 weeks. It took forever for that to close up finally. I also became allergic to the damn painkillers (narcotics) so I really didn’t take anything except tylenol and ibuprofen for the pain, but it wasn’t unbearable or anything. I wish you long lasting happiness with your upcoming J Pouch! You have to go through a lot to get there, but I think you’ll be happy when it’s all said and done.
Thank you so much for sharing your story. I was diagnosed with UC when I was 10 years old. I am now 42, and my UC has now taken hold of my entire colon (pancolitis). I know that I am looking at having surgery, but I have always been so scared.Right now I am on lots of meds and I have to get iron infusions to keep my blood levels high.
Thanks again for letting me know what to expect.
No problem Kathy. Damn! That is a hell of a long time to have UC, you have to be pretty tough. Good luck with everything!
Hi Blake, Me again. I am about three weeks out from the second surgery and 4 weeks away from the take down (if everything goes right and the xray of my pouch is satisfactory.. it better be). I have a doctors appointment on Monday so I’ll see what they say..but I have a couple more questions about this lingering pain that I am feeling and just wondered if you experienced this at all. First, and sorry this is a little graphic but I guess at this point we are all used to about our buttholes, but mine is like throbbing hardcore. What the heck is that? It kind of just started a week or so ago. It’s just kind of a dull constant pain and kind of hurts when I sit on it etc. I am guessing maybe its because someone just sewed or stapled a pouch to my anus (wow) but just wondered if anyone else had experienced that? How long did it last? And maybe because I’m female something is different down there with what they did so if any women read this maybe you can offer insight.
Also, whenever I eat it kind of hurts in my intestines. Just like a lot of cramping and such. I don’t really know how to describe it. Maybe its because I eat too big of meals too quickly and my body just can’t deal with it. But I have been trying to eat slower and smaller meals more frequently instead of three massive meals like I would when I was healthy. Anyway, do you remember having discomfort or cramping when you ate?
Hope you’re still doing well. It’s really motivating to know that someone out there is doing well after having gone through all of this. There are some tough days but knowing there is a light at the end of the tunnel is a good feeling. And it’s better to hear from an actual human thats gone through it and not a surgeon who has no idea what it actually feels like. You have no idea how much you’ve helped me and so many other people from what I can tell. Thanks for taking the time to check these comments and respond. It’s appreciated.
Hey Katherine, thanks for the kind words. I always love to help where I can. As far as the weird feelings your getting down by your b-hole, I think I remember something like that. It’s hard to remember exactly because you go through so much stuff, so many weird feelings, so much is new. I remember having a throbbing feeling back there. I don’t remember when it happened, between what surgeries or how long it lasted, but I remember something like that. Having so many feelings and sensations I never had before going through all three surgeries that I can’t even remember that stuff now. I know it seems like a big deal at the time your going through it, but it’s probably exactly what you think it is (because of the surgery) and it will go away and there will be another weird pain or sensation replace that one. Haha! But it does end. I still have weird stuff going on with me every once in a while, but then goes away and I forget about it. If it gets worse or doesn’t ever let up, I would see the doctor, but I’m almost positive I felt something like that.
I never had a big problem eating except for right after the takedown surgery. I ate a hamburger as my last meal in the hospital after takedown (stupid idea, take it easy with the food after your takedown). I went home and started feeling ill on the drive home. I was nautious, dizzy, had the chills. I felt much like I had the flu instantly. We got back home for about an hour and then I had my wife drive my ass back to the hospital again for another nights stay. I had some kind of blockage that passed on it’s own, but it was miserable at the time. I went home and that was the last problem I’ve had besides butt burn and night leakage. Leakage is the kind term J Pouchers use for shitting their pants just a little when you sleep. Hopefully, you won’t encounter that, but I have and it is still a problem for me. Not a big one, but an annoyance that I could live without.
If you haven’t already, start practicing your Keagal exercises. Get that sphincter back in shape. Oh yeah, one more thing. You’re going in to have your X Ray thingy soon to see if your J Pouch is all closed up and no leaks. I was wondering as I was sitting in the waiting room waiting for mine thinking, “what the hell are they gonna do to me?” Basically, they will stick a tube up your butt, nothing big, can’t even feel it once it’s in and tape your ass cheeks together. Then they will slowly drain the enema into your backside and watch it on camera just to make sure there are no leaks. You have to hold it in for a while, but thats about it. The worst part is when they take the tape off, that stuff is strong. I was all anxious when I went in for that appointment, but it really wasn’t bad at all. Way easier than getting scoped or all the other crap we have to go through. Good luck Monday with that appointment. Talk to you later.
Oh no, really? I did not know thats how they x rayed the jpouch. And you aren’t asleep? I mean that seems like it could be painful. Damn. Ill take your word for it and hope it’s not so bad. Just right now with this throbbing anus that seems like a total nightmare. Well now that I know I can ask the surgeon tomorrow. I’m sure the usual explanation of “mild discomfort” will be given. Haha. Thanks for the info.
I just wanted to say thanks you for your story. It was stories like yours that made my decision to go for surgery a whole lot easier. I just had my first of two surgeries on the 14th and besides the minor pain at the incision I feel pretty Damn good! Was gonna go back to work this week but my wife keeps yelling at me not to rush it and she’s probably right so I think I’ll take one more week off. I’m hoping to have my takedown at around the eight week mark and start the final leg of this wild trip of kicking UC’s ass!! Thanks again brother and congrats on your success!!
Awesome Jason! I feel so appreciated, haha! I’m glad you’re feeling good and you got a great attitude! You’re wife is right, don’t rush back in. I didn’t want to go back to work because I enjoyed my time off. We got our whole lives to work right? Hell, if I could I would still be off work right now and I feel great! But it is good to get back to a routine again. I’m 3 months past takedown and besides a few pesky little annoyances here and there, my J Pouch is treating me really good and I’m glad I got it. I wish you mucho success on your next surgery. Let us know how it goes.
Just wondering if you can advise on what the expected time frame is to go back to work after the 2nd of 3 surgeries. I am going in Next Friday, the 7th for the second one and am hoping it’s really not too rough.
Did you find there was many leakage problems and it’s tough to get a good seal or what did you think?
I also have a work Christmas party 7 days after the surgery and was wondering if there would be any chance of making it?
Hey Chris. I would say don’t even bother with the Christmas party. That’s a pretty definate no go. If you really, really, really wanted to go, I’m sure you could, but you may wish you had not. Your doctor is probably going to tell you 4-6 weeks recovery before returning to work. I’m not sure what you do. If your manual labor, you may need a bit more time, if you sit in an office all day, you may not need so much time. It all depends. If I really wanted to, I could’ve went back to work after 2 weeks, but who the hell really wants to go back to work??? You will be able to decide when the right time for you to go back is, but it’s generally 4-6 weeks.
I did start having leaking problems after the second surgery, but once I found that right bag, combined with a Nu Hope belt, my problems with leakage stopped. You will probably want to find a convex bag because that will help bring the stoma out. You can ask your ostomy nurse for advice and I’m sure she’ll probably tell you about the convex bag. The belt was just an extra layer of protection. It helped keep the bag on really good. I found that if I would wear the belt for a couple hours right after I put on a new bag, it really helped. Good luck with the next step Chris.
Blake, thanks so much for your story! I am 10 days out from my takedown surgery and I was searching the Internet desperately trying to find someone to compare my progress to! I came across your story and from reading the comments I am so happy to see you are doing well a few months out. This first week home with my JPouch has been very difficult, but it calms my nerves a bit to see that it’s normal! I am 34 and was diagnosed with UC when I was a teenager. I suffered many years with it, but eventually found a great GI specialist, responded well to medications & had regular colonoscopies for the next 15+ years. Well, during my 9th month of pregnancy when I was 32, I became very ill. My GI doc wanted to do a quick scope to rule out any blockages. We discovered that my UC turned into colon cancer and by the time our daughter was 4 months old I had my colectomy and JPouch surgery. It was stage II cancer and we found it just in time! I did 8 rounds of chemo and now I am doing great- cancer free. I am in remission and just had my takedown surgery on November 19th! I am so happy to see that you are loving life with your JPouch and this gives me lots of hope! I was at that place a few days ago where I was in so much pain I wanted the bag back. But each day is getting better and better! I have been documenting my family’s story on a blog: theklappfamily.blogspot.com. And you are right about having a wonderful spouse as your support! I couldn’t have done this without my husband, and kudos to your wife! A big thanks to all the wonderful caregivers out there! Thank you for being so detailed and honest with your experience and I am looking forward to feeling better in the weeks to come. I’m having the same problems with the gas pains :( I am going to try Metamucil today and some simethicone to hopefully get some relief. Please keep us updated with your progress! Congratulations to your renewed health! Best wishes to you and your family.
Hey Meredith. Wow! Crazy story. I’m really glad you’re cancer free now. That had to be scary, don’t have to worry about colon cancer now. That’s a plus! I know you’re going through the worst of it right now with the J pouch, but things will get much, much better. The gas pains are terrible! I remember thinking to myself if the gas pains don’t every go away, I want my ostomy bag back. But they did, I think around the 2 week mark it started getting better. Now I’m at 3 months and I still get gas pains every now and then, but they are way easier to deal with, nothing like what you’re experiencing now. It usually means I just need to sit on the pot now when I get gas pains. I think they’re so bad after surgery because you still have air from the surgery in your intestines. I guess they blow air in there to make it easier to work with, but it takes a long time for it to all come out. So hang in there. Cool blog by the way, I just checked it out. You have a beautiful family. I saw your video of you changing the ostomy bag. You are one brave chick to do that and you looked great with an ostomy bag! I’ll bet nobody ever even knew you had one unless you told them. Anyway, good luck with recovery, let me know if you have any questions and I wish you all the best!
Blake ~ I was so moved by your story and strength I just had to share it on my facebook “YOU ARE AWESOME” thank you for sharing your story <3
"The Happiest of Holidays to you and your BEAUTIFUL FAMILY" =)
Thanks Lauren, really nice of you to say! I hope you and your family have an awesome Holiday as well! Thanks!
Just had the second surgery on Friday. Today I went to the washroom and a bit of blood came out my butt. Is that normal or should nothing be coming out as I still have an ostomy?
Hey Chris, that sounds pretty normal if you just had surgery Friday. Keep an eye on it and if it doesn’t improve, talk to your doctor. I had stuff coming out of there about once every day/every other day. I don’t remember blood, but considering you’re fresh out of surgery, I’m sure that’s pretty common. Good luck!
Thanks for writing about your story. Had my first step in August and scheduled for the second of 3 in March. Very scared as my first one landed me in the hospital for 6 weeks and delayed my second step by 3 months. Your story gives me hope that this will all be worth it. Hope to have the take down in June. Happy Holidays!!
Thanks Michele! I think you’ll be happy when its all over although, I was very happy after the first step… after the shock of everything faded away. Good luck to you and enjoy your new freedom away from the crapper!
A week now after my 2nd of 3 surgeries and the output is constant and extremely watery. Feels like I’m emptying all the time. Does it ever slow down?
Also, does your J-pouch make noise when you go to the bathroom?
Hey Chris. Yeah, it should slow down. Mine was the same way, I had to empty it more frequently after the 2nd surgery. The food is not traveling through your whole small intestine anymore, so it’s not as broken down and it comes out quicker. Try taking Metamucil with your meals, that should thicken your output up. Yes, you make some noise in the bathroom when you have a J Pouch. It’s a lot like taking a regular dump with a colon. Generally, people find it hard to fart with a J pouch, so they don’t fart until they go to the shitter, so this can be noisy. I can only fart safely when I’m laying down and most people I’ve talked to with a J Pouch are the same way. When I hold my gas in for a long time, it can make some mean noises from your belly too that will scare a small child. But I don’t want to scare you, it’s nothing you can’t deal with.
I just had the third and final surgery, I am so glad to be done with surgical part of all of this. It was such a short surgery and hospital stay! I am home now and of course still in some pain, but for the most part feel like I am on the mend. I do have a couple of questions. First of all, my entire abdominal area seems to be very swollen. I’m pretty sure this is what I’ll look like if/when I am ever 6 months pregnant. I have never seen my stomach like this. Its really hard and puffed out, but I am not really eating much. I assume it’s from the massive incision I have running vertically down my belly/ whatever they did to me in surgery. Do you remember this? How long does the swelling last? It’s also kind of lumpy but the doctor said it would “probably” heal flat.. that’d be nice. Anyway, it’s definitely nice to be excreting waste from my butt again. I sat on the toilet earlier thinking about how thankful I was to be using my behind for it’s intended purpose, and found myself wondering if the past 6 months had ever even happened. What a ride this has been. I can’t really complain about much besides the obvious surgical/ incision pain. I have not been going to the bathroom that much.. probably 6-8 times. But, I haven’t been eating much either. I have to force myself to eat small meals throughout the day… appetite just isn’t back yet. Plus, I know pain meds can “constipate” you, so maybe once I stop those, I’ll be going a lot more. I just expected to be running to the bathroom a lot.
Anyway, thanks for all of your help through this journey. You’ve answered so many questions and eased a lot of concerns. I hope you and your family are getting ready for a great holiday season!
Glad to hear your doing well. As far as the stomach, I had a lot of swelling right on my lower belly, right at the waste line, right at the C-section type incision. I use to have a pretty flat stomach, but now my lower belly pretty much hangs over my pants. I thought it would go down over time, but it hasn’t. I think it’s because my incision and the way it healed. You had a vertical incision though, yours is probably still inflamed. I’m sure it will go down over time. 6-8 times a day is a really good number this early. That’s awesome. What killed me was the gas pains. I hated the first couple weeks. I hope you have a Merry Christmas as well. Enjoy your new ass!!!! Haha!
Just a quick question to anyone who has responded to this thread and has had the surgeries. I just wanted to know if anyone has had the surgery using the new laparoscopic(minimally invasive) methods instead of the standard scalpel incision? I’ve heard that there is less pain involved in those types of surgeries & the recovery times are supposed to be faster. Does anybody have any first hand knowledge of this procedure?
I’m scheduled for surgery soon and have been given the option of laparoscopy & just wanted to know if the Dr’s claims of less pain & faster recovery are true? My surgery date is fast approaching and my apprehension is rapidly building! Not that you guys can’t already tell from this post…
Thank you all for any help & guidance you can give me!
Hi Joe. All my surgeries have been laproscopic. Compared to what I’ve read about the open surgeries, my recoveries went alot more smoothly. The first, a colectomy, took awhile because I was so, so sick and kept getting Cdiff, but surgically I was able to get back to business in about 4 weeks. The second one (jpouch construction), I was out and about right away, but it took about 5-6 weeks to completely heal. Waiting for takedown surgery on Thurs., so can’t help u with that one. Good luck with your surgeries:)
I had mine done laproscopically. I really don’t know why anyone would chose to do it any other way (if they had the choice). From what I understand, the most common method is a 2 part or a 3 part. I think more people chose to do the 2 part because it’s less time with a bag. I wouldn’ve chose that, but my Dr told me I would have less of a chance of becoming impotent if I went with a 3 part. But this is such a slight risk, if I had to do it over again, I would’ve done it in 2 steps. You have to think that these surgeries are big business, so if they can take you through 3 parts, that means they make more $$$ off you. I kind of think my surgeon coaxed me for the 3 part just for that reason. Just my thoughts.
Both of my hubby’s surgeries have been laproscopic. He’s healing beautifully. The day after the first one he was up and walking. After the second one, he was walking that day. Physically, he’s tired, but it will be that way any way. Emotionally, he needs help. Anyone would, so go ahead and line you up a therapist.
There’s really not that much to worry about.
Hello Mrs. Hudd,
Sorry for the late reply. I was just starting to get last minute things together for my surgery when I learned that it was bumped back to Feb 7th. Anyways, I noticed in your post that you made reference to your spouse needing the services of a thereapist. What kind of therapist were you referring to? My wife and I were going over Blake’s story and all these responses again for inspiration & to prepare us for what’s coming. Then we came across your post. We really were not sure what you meant. Would you care to elaborate a little more on what kind of services you’d recommend? Thank you!
Thanks for the quick reply and the words of encouragement, Lisa! I hope your takedown goes well and without any complications.
Both me and my wife have been reading your blog & it has greatly assisted us on mapping out our expectations with the entire the process. Both of us would like to thank you for sharing your personal experiences with all of us.
I think I’m going to be a train wreck on the day of the surgery. My Dr. want to combine the first two parts of the surgeries essentially making it a 2 step procedure rather than the standard three. I really hope that she is Jamie on the spot with the morphine drip because I am NOT looking forward to the inevitable pain when I wake up. Which I believe you described as like “someone was stabbing you in the gut with knives” and as being “worse than giving birth”. No matter, I’m out of options and it needs to be done!
Yay that’s exactly what my hubby had. The pain won’t be that bad. Just take a small square sized pillow with you to hold over your site when you cough, laugh (you WILL laugh). It will be uber weird at first when you realize that you don’t have to run to the can. The bag takes a minute to get use to, but it’s easy when you find a bag that works. Your out put is going to be ridiculously high at first. That’s normal. Don’t forget your body is use to actively fighting and it won’t have to. A few extra lomotil to slow things down and some welchol to thicken you up will do the trick. Make sure the nurses regulate your output before you leave, otherwise you’ll end up right back because of dehydration. You don’t need to be a train wreck. It’s not that deep. Oh I know this sounds a little… when you feel a little better,inin a couple of weeks, make sure you’re able to “rise ” to the occasion. That is a major risk that is avoided with the laproscopic procedure. I’m sure that has been furthest from your mind, but it’s good to know that you can, if you want to.
A little additional question to my narrative above.. just wondering how you are doing now, specifically with the “butt burn” phenomenon. Mine has just started to kick in pretty hard core.. ouch. Is it still a problem for you, or is this something that I can look forward to getting better over time? I know there is some magical cream every one gets, do you know what the name of it is? I left the hospital with something, but it’s not doing the trick. Anyway, yay for pooping out of my butt, boo for feeling like I am peeing fire out of it. Haha, just kidding, I am not going to complain, I am so happy not to have the bag. Thanks for helping!
I know you asked Blake, but we are going through the exact same thing. The stuff that helps my hubby is called Calmoseptine and it’s only sold at Walgreen’s. He tried destin and he only has one kind of painful area. His doc described it like this… the skin down there is like fresh baby skin. In just a few weeks, your bottom will have gotten tough enough that the pain is bearable. There really is a light at the end of the tunnel. Hang in there.
Thank you Mrs. Huds, glad to hear that this too will pass. This whole process is a test of patience it seems. Thank you for the information!
Oh BTW Blake will tell you to get a bidet. I think he’s right. They really aren’t that expensive and they seem to work.
Haha! Mrs Huds is reading my mind. Yes, I would suggest getting a bidet. Since I’ve gotten one, my ass is the cleanest in town. And I rarely have issues with butt burn. Calmoseptine is great if you don’t have a bidet like Mres Huds says. Also, if anyone wants, when I got my bidet, they sent me like 3 gift cards. Basically, if I refer someone to buy a Coco bidet, you will get $100.00 off and I will get a free filter (about a $35 filter). So if anyone’s interested, talk to me! Let’s get those asses clean!
How’s everything going brother? I just had my takedown last Friday the 11th. Just like you, the first few days weren’t bad but now the bloating and gas pains are HORRIBLE!!!! The worst part is, nothing seems to help! How long do they last? And is there anything I can do to ease them? Thanks, hope all is well on your end!
Hey Jason. Congrats on the new pouch! Unfortunately, I dont have any good advice on how to deal with the gas pains. I didnt take anything for it outside of gas X, which didnt help at all. I think you’re basically just gonna have to tough it out. My gas pains were bad for about 2 to 3 weeks, then started to get better. Now, I dont have any kind of gas pains like I did those first few weeks. I do get gas pains still, but they dont even compare to what you’re going through right now. It will get better. I know it sucks bad right now, but that wont last long. Stay tough, you’ll be okay. Take care of that backside, calmoseptine is your friend and you may want to get some diapers or pads for your underwear to sleep in for now. Shit happens! Especially in the beginning. To give you peace of mind, Im still feeling fantastic with my pouch and definately happy I went that route. Take care bro!
Congrats on your take down!!! That’s kind of a big deal. I’m sorry you’re experiencing the gas pains. The only thing that will help is time and my hubby Says Nexium worked for him. I think they lasted about 4-5 weeks. Sorry that it sucks. I hope that helps.
Congratulations!!! Thank you for sharing your story. Many of us will have to make this decision and it’s nice to know what the road ahead will be like. Good luck with your continued recovery.
How long were you in the hospital for the second surgery when they created the J pouch?
I think about 4 days total. I think it’s somewhere in my story. I have a hard time remembering… which is a good thing!
I am in the hospital as I write three days post step one of two for the j pouch. One very important thing to speed recovery. Have epidural anesthesia drip post op. no pain. Fast recovery
I wish that was an option for me. My surgeon seemed to feel that I’d be ok pain wise because my procedure was done entirely through keyhole laparoscopy. But when I woke up, no morphine drip helped with the pain. I just ended up having to suck it up for a couple days until things got a little better. And they did. The pain subsided & I eventually adjusted to life with an ileostomy bag.
My stomach is flatter on the right side. I have a vertical incision. I was wondering if that will eventually flatten out. My takedown is scheduled for this Friday.
I’m not sure what your stomach will do. I had a horizontal incision. My stomach puffs out right at that incision as if I were wearing really tight jeans. I also have two lumps where my stoma used to be. I figured they would dissapear, but it’s over 6 months now and they are still there. But hey, small price to pay for feeling good right?
thank you for your honesty Blake, and I wish you and your family all the best!
Thx for sharing your story and in great detail, helps to really understand what the procedure involves. Good luck to you and your clearly very supportive family.
Hi Blake, thanks for sharing your story, and it has helped me to decide that surgery is looking like the best option for me. Also it is good to finally talk to someone who knows exactly what I am going through. Only the wife has any real idea what my UC is all about as she has been there throughout. I was diagnosed with UC 10 years ago and the first 9 were not too bad as my flare ups were dealt with comfortably with mesalazine and I was able to live a ‘normal’ life. However the last 12 months have been hell, as been in hospital 3 times having to get blood transfusions & iron infusions etc etc. I have been on a constant flare up and am fed up of going to the toilet 10 times a day bleeding, severe stomach cramps, fatigue etc. and having to get up 1-3 times during the night. This UC has seriously affected my family life, ability to my job and generally made me depressed etc. I have tried all the various meds but without success. I have just had my 3rd renicade infusion but so far it has done nothing. They have offered to give me further Renicade infusions whilst taking azathioprine however this did not work when I took it on its own so I don’t see any point in trying it again. I am now at the point of thinking get this damn colon out of me so I can get rid of this UC for good and get back to ‘normal’.
The J pouch process seems to work for most people however it is a long and sometimes painful road and the thought still having several toilet visits is putting me off. Having one op and just having a bag seems more straight forward in some respects. Anything has to be better than living with the daily grind of UC
Hope you continue to get better and good luck!
All those feelings you have are very familiar to me. I kind of had the same thought process as you as I was going through it all. I just wanted one surgery, did my research and found that not a lot of people seemed like they had much success with the J Pouch. I decided to do the J Pouch because my thought was if it didn’t work out, I could just go back to the bag. I’m really glad I chose to do the J Pouch surgery. I’ve had it about 9 months now. There were some rough parts, but overall, I would definitely count my J Pouch as a success. I go to the bathroom pretty regularly, about 5 times a day, maybe once a night. My stomach makes a lot of noises, which can be pretty loud because I really can’t fart unless I’m laying down. So with all that gas in my system, it tends to get noisy until I go let it out in the bathroom. Then I’m fine. Overall, there is not much for me to complain about with the J Pouch. I’m back to being the normal me again. I work out all the time, lift heavy weights, play sports, rough house with my son, and don’t have any problems. There are a lot of success stories on this website with people with the J Pouch. It seems like more and more every couple weeks. I’m not telling you to get a J Pouch, but I do support that decision if it is what you decide. I really think you’ll be glad you did it. Hell, even if you chose to get a J Pouch, you would have plenty of time to back out if you liked living with an ostomy and didn’t want to go forward with the J Pouch. This surgery is a blessing, even though it may not seem like it. It gets you off the toilet and back to living life! Ten years is a long time to suffer. I was lucky, the UC hit me fast and hard. I only had less than a year of misery. Good luck to you and let me know if you have any questions.
Hi Blake, I am glad to hear that pouch has been a success for you (and the others on here) and it does make me think that it is still a serious option for me. Saw my doctor and surgeon last week and am booked in for my 1st surgery on the 29th August to get my colon removed etc. Am thinking will then have a good 6 months or so with a bag before deciding whether to go ahead with a 2nd surgery and have a pouch or make the ‘bag’ a permanent fixture. They said I can take as long as I need to decide so no there is no rush which is good. Initially I am just looking forward to not rushing to the toilet etc. and being ‘normal’ for once. At the minute I am waiting on an appointment to see the stoma nurses to talk about how to look after the stoma and what bags to use etc. Do you have any hints / tips? Thanks
Awesome Dave! There are lots of good products out there. The big companies will send you all sorts of freebies after surgery. You just have to call them and tell them you just had your colon removed and they will try to get your business by sending you free stuff. I didnt have to order any bags for a while cause I had all these freebies to use. Your nurse should give you info on contacting these companies. It is important to have a good clip. I had a couple bags open up on me until I found a good one. Cant remember which company made it though. I also was a big fan of the Nu Hope ostomy belt. I felt a lot better out in public, at the gym, at work with that belt on. Just an extra layer of security. Ask your ostomy nurse a lot of questions on how to clean your skin proper, how to use the ostomy powders, just ask ask ask. You will most likely have skin issues where you wear your bag, it’s hard not to, but there are things you can do to help yourself. Good luck with everything.
Hi again Blake,
Just thought I would give you an update since my last post. Had my first surgery on Aug 29th so am just recovering and so far so good. Seeing the stoma for the first time did me give me a shock but I am now slowly getting used to to it. I am also doing ok with emptying and changing my bag etc. It is great not having the urgency to need to loo and all the others issues that come with having UC. I can finally relax for once with piece of mind knowing I will not be running to the loo all the time and having serious stomach pains etc. etc.
I have still not decided if I want to go for surgery number 2 and a j pouch etc.. I will see how I go for the next year or so before making any final decisions. For now I am just happy to be UC free and looking forward to being ‘normal’ again.
Hope all is well with you!
Thanks so much for your inspirational story..I’m 40 yrs old and was diagnosed w uc at she 18 ..had a few good years and then the flare ups began and they tried everything until they realized my colon was so diseased they needed to remove colon and give me the illiostomy …..that was done in 2011 ..after feeling like my life was over wearing a bag it just suddenly became normal for me .thank god it didn’t bother my husband at all and my kids were at the time 1 and 3 yrs old so they didn’t know any better ;(
I finally decided to go for the reversal surgery this past month …in April I went in for the j pouch surgery and now I’m feeling like I made a mistake …I’m having major issues with stoma and bags leaking all the time ;(( I have tried every different type..my stoma is so different and it seems to point down and invert in .. Which is causing leakage and my skin is so raw .. I was planning on having the take down done after summer ..however if I can’t stop leakage I may have to have it sooner ;( I just want to feel normal again ..as you know this is such a hard thing to go through w little kids .. I know it will get better one day and I’m glad to see all these similar stories to mine ;))
Thanks for your story and I hope you Are doing well !!!
Hey Jen, sorry you’re not having such a good time. My second stoma sucked as well. I leaked all over everything too until I started using the cocave wafer. It pushes your belly in and brings out your stoma. I also wore a Nu hope belt to keep ot secure. That combo really helped my leakage problems. I hope you find a resolution, your time with the bag is nearing its end, good luck!
I finally have my second surgery of three tomorrow June 5th. Any specific details that you can remember about life after surgery #2 would be great. Things went exactly as you said they would for the first surgery and just a funny side note, my bag split and started to leak just a little during my visit with the anethesiologist today. It was kinda funny because my visit was over in record time once we all figured out where the odor was coming from. LOL
I think you’ll find your 2nd stoma isnt as great as the first. It may take some time to find the right bag. I found the best for me was the concave wafer. I also wore the Nu hope belt. You will probably need to empty the bag a bit more since your food is traveling a shorter distance. It will also be more liquidy. Other than that, it is about the same experience as getting your colon removed. Good luck to you!
Yep Blake you are correct. This second stoma is a much crappier version of the first. It is so close to my skin that it is tough to keep it from leaking but nothing serious except for a rash that has developed. I found that if I put stoma paste around the outer edge of the wax ring it will get me through. I have an appointment with the stoma nurse next week to determine which bags and wafers to order. For some reason the pain for this recovery is more intense but I think it is because my pain meds are not working. Things go through me so quick now that I think my meds are going through before my body absorbs them. I am trying to take them with bananas and imodium now. I am so ready to start sitting on the toilet again. I cope with Sparky sticking out of my abdomen but I really do dislike the life style. They did send me home with a JP drain that I will get out next week and it really sucks and I am sure it will really hurt when they pull it out. Hope all is well with you and your family, like you there is no way I could have gone through this on my own. My takedown is first of september. How long were you in hospital for that surgery?
The takedown was the easiest of the 3 surgeries for me. I did not feel like I even had a surgery when I woke up from it. I think I was in the hospital for 3 days. My advice to you though is do not try and eat solid food too quickly after surgery. I chose to have a hamburger patty my last day in the hospital. That was a mistake. On the drive home from the hospital, I started feeling nauseous, feverish and light headed. I ended up back in the hospital that night. I could have avoided that if I didn’t rush back in to eating solid foods, but it’s hard cause you’re really effing hungry by that point. Just stick to the ice cream, pudding and applesauce for a while. That was the only blockage I had though, never happened again so I’m thankful for that. Good luck bud!
Wow Blake, really great story, it’s helped me a lot. I remember reading this almost a year ago in the hospital when I first got really sick and had my colon removed. I had it bookmarked and forgot about it until now. That’s awesome that your 3rd surgery went well and it’s getting easier to manage. I just had my 2nd surgery on May 31st, and have already made plans for the 3rd one soon. I just had a question about weight lifting. I’m 18 and used to love working out before all this. I’ve been working out on and off with the bag, but I always assumed that after the 3rd surgery I would really get back into shape like I used to be. It says you like weight lifting, so I’m sure you know what I’m talking about. I was just curious as to how it is after the 3rd surgery? Is it difficult to go to the gym or put back on weight/mass? I know the right diet is especially important now, but just gym wise, what’s it like? How long did you wait before you could go back again?
Great to read of someone else’s experience..
I’ve recently had surgery (5 weeks) and have
Temporary stoma..I’m doing fairly good and
Like you have started back in the gym after
4 weeks..just these last few days I’ve been
having the sensation quite alot that I need to
go to the toilet!!when I sit down there is
a little discharge like you describe.just
wondered if you had that feeling in your anus
like you need to go??also what kind of diet
did you have after surgery and how are you
Hi Blake! Thanks for sharing your story. Just like you, suffered from UC and will be doing three surgeries to have a J pouch. I actually just had my first surgery (laparscopic) about a month ago. They took 80% of my colon-I now have ileostomy bag. I think I’m getting used to it, and still learning more about how to take care my stoma better. I used to be scared of what the next surgeries will be but reading your story really gave me comfort and hope. Thank you
Thanks Rosie! Hey, that’s pretty cool that you get to keep part of your colon. That should actually make things pretty normal in the toilet bowl. Hopefully that will make things a little easier for you. Good luck!
Hi,you been an inspiration for all of us,as i reading your stories ,you became my inspiration as to how you could handle this kind of disease,im a mother of four,living in Philly,i was diagnosed this summer of pan colitis, ill tried a lot of med. already but nothing worked,n now im on remicade, i had my second colonoscopy lst. Week n nothing change,so thy recommend me to talk to a surgeon, i was freaking out to death, knowing that this will be my last resort, but when i read your stories,it gives me strength, knowing that anyone can undergo the same situation as mine n they survived and lived a normal life…my husband said …you are very strong guy,a father n a husband to your wife,you inspire everyone that even we had this disease,it is not the end of the world. Thank you for sharing your stories,..hoping for your fast recovery.
Hi,you been an inspiration for all of us,as i reading your stories ,you became my inspiration as to how you could handle this kind of disease,im a mother of four,living in Philly,i was diagnosed this summer of pan colitis, ill tried a lot of med. already but nothing worked,n now im on remicade, i had my second colonoscopy lst. Week n nothing change,so thy recommend me to talk to a surgeon, i was freaking out to death, knowing that this will be my last resort, but when i read your stories,it gives me strength, knowing that anyone can undergo the same situation as mine n they survived and lived a normal life…my husband said …you are very strong guy,a father n a husband to your wife,you inspire everyone that even hwe had this disease,it is not the end of the world. Thank you for sharing your stories,..hoping for your fast recovery.
Madecena you should go for the jpouch,you will live a better life,it’s been 14 months now and I feel great,my job fired me for being out sick to long but it’s ok I bought my own business a pepperidge farm cookie route ,I go to the bathroom at 5am and make it till like 2 or 3 pm,with only a small breakfast though,if I pig out then I go more ,I live in Long Island ,ny
Madecena you should go for the jpouch,you will live a better life,it’s been 14 months now and I feel great,my job fired me for being out sick to long but it’s ok I bought my own business a pepperidge farm cookie route ,I go to the bathroom at 5am and make it till like 2 or 3 pm,with only a small breakfast though,if I pig out then I go more ,I live in Long Island ,ny I had it done in 2 steps,well best of luck to ya!!ps I’m real active with my family again!!
Hi Rico!!! Thnks for your replied…as of now im still waiting for my blood test to see if i have anti body to remicade, but i don’t wanna get another strong med. bec I’ve been on prednisone already n the side effects are killing me so bad, you are a strong person,hoping i will be like you ,being a strong person n know how to handle this kind of disease.,.im very thankful that im not alone,n million out there are also suffering fr. This kind of disease.How long have you been in this disease before you finally go into surgery?bec i was only diagnosed this summer but aim miserable already,im afraid to go out knowing i might have stomach pain n cramps n unable to find a bathroom right away….but anyway ill keep in touch with you if I made my decision, thnks for your advice,how are you feeling now?hope everything is well…
I had uc for 2 years,tryed it all ,remicade did not work it made me look like a crack head and I lost 50 lbs,the surgery was real hard and scary but u have to look ahead my colon was doing me no good,and I had to try and get back into things I would hide from friends and not go anywhere?i couldn’t even walk my dog around the block,a sip of water would make me go??,now I eat cake and junk food!!lol,but I shouldn’t ..well be strong I got to get to work it’s 430am,keep me posted,c-ya..
Blake, having my second surgery (2nd of 3) on Tuesday. First surgery went great and was a welcome relief from the daily pain and numerous trips to the bathroom. Just praying 2nd surgery and recovery goes as well as first. Thanks to all for all the info.
Thank you so much for sharing your story. I am seeing the surgeon next week to talk about surgery and I now have a much better understanding of what to expect and what to ask him.
Thank you so much Blake, my husband has been fighting this for 10 years now and is out of options. He will be scheduling his surgery early next year. (Which is around the corner since it’s mid November 2013.) I have a better understanding of what is going to happen now and I hope I am as good a wife as yours was.
Awesome post Blake! It had me dying laughing at a few points becasue I know exectly what you are saying and your descriptions are very acurate in regards to the ileostomy. I was diagnosed with UC when I was 16. I am now 36. My UC was never that bad but I ended up developing colon cancer this year and had to have emergency surgery in April to have most of my colon removed. I’ve had an ileostomy since April of this year. Next week I go for the surgery where the doctor will create the j pouch. I am starting to get a little nervous but your post has been great to read to find out exactly what I will be in for. The first stoma has been great. Not looking forward to the second stoma though. Thanks again!
this was a great read Blake. I had stage 1 surgery (1 of 3) 6 weeks ago and my situation seems to be similar to how yours was at that time. I’ve recovered well and eating what I want and getting my fitness up.
Managing the bag is ok, I could live with it, but I think its worth the risk to try the J Pouch.
I’m not looking foward to the next stage though, it seems the loop ileostomy is harder to deal with but at least I know what to expect from your story and others.
Hope all is good with your J pouch…
Thank you for sharing your story Blake. Happy healing. You really have a wonderful wife
Thank you Blake for such a honest and inspirational account of your j pouch surgeries.
I have my first of three surgeries on may 14th here in the UK and after reading your story I feel more optimistic and am ready to face all the difficulties that come with it after 16 years of Uc anything is better.
Here’s to all our futures may they be awesome!
Hi Blake. Thank you for your story. My son (age 6) had is colon removed in June of 2013 and has an iliostomy bag. Doctors have talked about wanting to do the j pouch surgery, but I have VERY mixed feelings about it. Would you personally recommend it for a child? I have read the pros and cons and am very skeptical. Are there any specific websites you would recommend that I look on regarding the surgery? I am a single mother of two young boys and am having a very difficult time deciding what to do…. Any help would be appreciated.
hey Michelle,sorry to hear about your son,i also had the j pouch surgery in 2012 sept will be 2 years,i have been doing great with not one leak in the night time,i go to the can at 5 am then shower,go to work,and im good until 2 or 3 pm,eating very lightly. when im home i pig out more and even have coffee and cookies,anyway if he already has the iliostomy bag its worth a shot,it only gets better over time,by my 3rd month in i was a million times better,and i gained 30 pounds,after losing 60 i looked like a crack head,good control you can hold it for 2 to 3 hrs sometimes,im going about 5 times a day mostly in the evening,anyway best of luck ,ps if your close to nyc,i recommend it..Rico.
My name is Jason and I had j pouch surgery last year. I had a very good experience with it and would recommend it to anyone! The only negative from it is that you have to use the bathroom more. But it is totally controllable, not like when you have UC. I have 2 boys myself and wouldn’t hesitate to have it done to either one if they needed it. Your bot is already use to having an ostomy so the absolute worst case if the j pouch didn’t work would be that he went back to that. Hope this helps!
Thanks for the story. I’m starting my three stage journey pretty soon (Sept 19th), and its mode to get an insight into my future!
This is the best damn story I’ve ever read. Blunt, honesty, to the point. Thanks so much. Although I am recently diagnosed with Chrohn’s you answered a lot of questions I didn’t even know I had about these procedures. Thank you!
Thanks for sharing this. I have had this disease for six years now and my body has rejected every medication except prednisone. After my last colonoscopy my gastro dr said that the surgery was pretty much my only option. I have been trying to do all the research I can and find out what to expect in the weeks and months after it is done. I am beyond ready to see what it is to be a normal person and I am more than willing to make the sacrifices to find out. At this point my only concerns are of the financial variety. Keeping my job our home things like that. I again appreciate you sharing you experience it has been an eye opening read. Hope everything is going well for you and thanks!
My 8 year old granddaughter has j pouch. She had total colectomy plus rectum removal. Will she ever be continent? Will she have to wear pull ups forever. The painful cramping has gotten a lot better, but has had pouch 4 months and still incontinent.
So sorry to hear that she is so young,but I can tell you she will get better each week over time,they told me I would have leaks at night too,but not even one so far.im 3 years in with the jpouch and still improving.be positive it helps!! Best of luck!!
If u need any info!!
Glad I read your story Blake! It’s comforting knowing so many people go through this hell with UC and we are not alone. I just had my Jpouch surgery 3 weeks ago and feel great besides some pain in my butt. How long did it take for that pain to go away for you? I’m looking forward to my last surgery to get rid of my bag and be reconnected! Would you say the last surgery was the easiest recovery or the same amount of pain as the others? Keep us updated! Glad your doing well brother!