Me and the Mrs looking sharp (I don’t ever get dressed up so I wanted to show the more classy side of myself) haha!
Introduction:
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).
Some more about me:
If I was a pro wrestler and had to pick an entrance song I would go with Pantera-Walk cause that song kicks tail!
Symptoms:
Former UC sufferer, no symptoms anymore!
Blake’s One Year J Pouch Update
Hey everybody, it’s been quite some time that I’ve written since getting my J pouch and I just realized that yesterday (8/21/13) was my one year anniversary with a J Pouch so I thought it is my duty as an ex ulcerative colitis sufferer to provide an update so here goes.
That’s my stoma about a week after my colon removal back in Dec 2011
So I chose to do a 3 part J pouch surgery. I had my surgeries from December of 2011 through August of 2012. Since my last surgery in August of 2012 I have lived with a J Pouch and I would like to tell you all about it. Not sure where to begin so I’ll try and remember the beginning of my time with the J Pouch. The first two weeks were awful, no sugarcoating that. It was not from the pain of surgery but it was because of the gas pains I had. It was very hard to sleep and very easy to crap my pants those first couple weeks. But I knew things had to get better so I knew I just had to get over it. After the first month or so I noticed a lot of improvement. The gas pains were still there a bit, but the intensity and magnitude of them was much less. I could deal with them. My ass was on fire the first month. If you’ve never heard of butt burn, well it’s basically all in the name. Your butt will BURN after takedown surgery for a while. I bought a lot of Calmoseptine lotion, and that was a lifesaver. I went back to work and quickly realized how much I missed being lazy all day recovering from another surgery. But work was good for me. Keeping busy really makes you forget about what you went through and focus on something different.
Stoma scar closing up
I went back to the gym and was taking it pretty easy. I was afraid of hernia’s after all of the surgeries so I would always wear a super tight abdomen belt under my shirt when I did anything physical. I heard people talking about bidets on another website for J Pouchers a lot so I decided to get me one. I paid $400 for a toilet seat that shoots water up your behind! Sounds ridiculous but it turned out to be a great investment for me as it really helped the butt burn. Not only is it very hygienic but now I’ve got the cleanest butt in town!
There are really only two complaints I have with the J Pouch so far. The first is that my stomach will make some pretty crazy loud noises from time to time. Everyone’s stomach growls here and there, but mine will flipping howl at the moon. I don’t know the scientific reason behind it, but my guess is that it is because I really can’t fart anymore unless I’m laying down (at least fart with any real confidence like I used to). So when I have gas, it travels down my intestines to my lower end and when I do not let it escape, it shoots back up my intestines like air bubbles go up in water and makes a growling noise. The longer I hold it in, the louder it gets. I’m just wondering when I will be in a quiet meeting someday and my stomach will do this, I’m not sure how I will react. Maybe I’ll have a really loud, weird long sneeze to try and cover it. My buddy at work who sits next to me hears it all the time and we laugh about it, but I 9;m not sure how a bunch of people who don’t know my situation would react. They probably will think I just ripped a big one.
That’s a close up of the scar left behind. I really didn’t want to show my nasty hairy ass stomach, but I wanted to show the progression. Apparently hair WILL grow back.
My second complaint is termed “night time leakage” by the J Pouch community. I call it shitting my pants a little while sleeping. Ha-ha! This happened to me quite a bit the first 6 months. When you don’t have a colon, you can never trust the consistency of your bowels. I will never have rock hard terds like Adam. My best days are something close to yogurt. So a little gas in your tank while you’re in deep sleep and you get a little surprise when you wake up. This rarely happens to me anymore thank God, but it’s really not one of the things anyone will tell you about because they’re either too embarrassed to say it or they’re just one of the lucky ones.
That’s me and my boy at the zoo today
Fast forward to today. I have one year under my belt with the J Pouch. I feel great! I would’ve never imagined myself feeling this way 2 years ago when I was sitting on the pot 15-20 times a day, bleeding, depressed, anxious and scared. I would’ve never guessed I would finally bench press that 315lbs I’ve been trying to get to for years, back to smoking softballs over the fence, wrestling with my boy, eating good food, being happy and living life again! I’ve made some good friends from sharing my story on this website and it’s awesome to hear their success as well with their surgeries. Super big thanks to Adam as always for having this website! I can’t forget my wife either. She was the one that held me together during that difficult time. I would not be where I am now without her. To everyone battling this dreadful disease, stay strong and don’t fear the pouch if your cards run out. I can’t back this up with any evidence except my experience, but I’m confident in saying there are far more success stories than there are horror stories with J pouches, you just don’t get to hear enough of the good ones.
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).
Awesome Blake! I too am a Pantera fan and that’s a great song! Thanks for sharing the ugly details too. I am struggling with UC and surgery is still on the table. Good to know exactly what to expect and also good to hear of your success. Thanks man and keep on rocking!
Don
Thanks for the kind words Don! I’ve hope you can find your answer to this awful disease sooner rather than later. Keep up the good fight and rock out to Pantera! Good luck to you!
Hi Blake,
Wanted to thank you for your posts about your journey with getting rid of colitis and having restorative surgery. I have followed your story, as well as a few others, and I wanted you to know that I will be thinking of you and all the others on Sept. 12, 2013 as I go in for the first step surgery. Hopefully mine will be complete in a 2-step. Your story has given me the strength to say..”if they can do it, so can I.” I’m a 39 year old mother of 3 daughters, ages 10, 8, and 3 1/2. I have battled this horrible disease for 3 1/2 years now. It has taken a lot from me and held me hostage at home…I’m tired of it, and even though I’m excited, I am scared. I’ll keep reading re-reading your story for encouragement and I’m so glad that you are doing well. Thanks being real in sharing your story, but also being positive. All the best- Diana
Thanks Diana! I think you will be happy with your decision, I wish you the best, let us know how it goes.
Hi blake thanks for the info..really helps
Cant wait for the burn to stop..pls can i have ur email add..so i can chat more to u..thanks pasoo
I am so proud of you brother, and so very thankful you decided to go through with the pouch! Did you know that “Walk” will be Austin and I’s wedding intro song…suprise! I love you :)
Well, well, what a surprise. I didn’t know you read my stories. Thanks lil sis! If that is really your song, mom will be terrified, but Evan and I would love it. Can’t wait for your big day! Love ya!
Blake,
My bf is about 2 1/2 months out from a two part j pouch surgery. I wish or wonder if there is a way you would consider talking to him and giving him some advice on some ways to get rid of butt burn and maybe just feeling normal again.
My name is dela and his is barrett. He is a volunteer firefighter and struggling whether he will be able to return to that life again.
Please help him!
Thank you
Hey Dela,
I’m sure he will be able to return. I’m not a firefighter or anything brave like that, but if I was in that profession, pretty sure I would be able to go back to it with no problem. I may have to take more bathroom brakes than the other guys, but that would be about it. I would have no problem talking with him, if you want to give me your or his email, facebook or whatever, I can write him and ask him if he has any questions. If you don’t want to drop your email on-line, Adam can probably just give you my email address (I don’t want to post it on-line either cause I get enough junk mail). I talk with a few other guys with J Pouches too and they can offer any other advice as well. Let me know!
This is all so wonderful Blake!!
A lot of us secretly envy you…you’re all done and you can live again!!
Cheers
:)
Thanks Bev! I remember being envious of people that had the surgery back when I was crapping my brains out. Too bad you just can’t hit the fast forward button to feeling good again and skipping all over the surgeries. I hope you are doing well these days!
Blake…awesome and thanks for the happy update. You deserve it. Great pics!
Continued health and all the best to you and your beautiful family.
Best, Shelly
Sounds like you must be due for another pull up competition…huh Adam…315 bench press?! :-)
Come on Shelly…don’t get him too excited. I’m not sure if my ego can handle getting its butt kicked twice in a 12 month span:)))
BLAKE,
Keep living the dream amigo, and stay in touch and keep us updated.
(Maybe a little belly shaving next time, this site is rated PG you know:))))
—Adam
:-) maybe a new challenge is in order?!
Haha, thanks Shelly! I don’t know if I’m ready to do any more pull up competitions. I got my butt kicked too, so I’m definitely not calling anyone out.
Adam,
Thanks brother! I keep it hairy, I don’t want my ripped abs to show too much. Haha!
Hairy and scary, nothing wrong with that señor. I’m sure I’d scare many a folks too(scary just thinking of that image)
Hey Blake,
I was recently wondering how you were. Glad to hear that you’re doing so well one year out. Myself, I’m 4 months away from the final part of my takedown. See, I had my procedure done in 2 steps rather than 3. I wish I could say that I’ve had the same positive outcome as you, but most of the time I feel as if I still have colitis.
Like you I can only pass wind while lying down. But unlike you, I still have to use the bathroom up to 20 times a day. Thanks for the tip on the bidet. That was $50 well spent. It wasn’t bad to install under my toilet seat and it has quite literally saved my ass. Guess I’ll keep plugging away like the drunks do, one day at a time & hopefully things will improve eventually. Thank goodness for long term disability! Take care & thanks again for sharing the details of your surgeries with us all.
Warmest Regards,
Joe T.
Thanks Joe. Man, that’s a lot of times to go to the bathroom still, I feel your pain. Did you talk with the doctor about that? Maybe your rectal stump (I don’t know if that is the correct term) is still super inflamed. Hopefully, once your done with all the surgeries, that will no longer be a problem for you. You got off a lot cheaper than I did with your bidet, I got the one with all the bells and whistles, but the only thing I use it for is the actual bidet part. I will probably go that route if I need to get another one someday. Good luck buddy!
Blake! I am so happy to see an update from you! Congrats j-pouch brother, on your 1 year anniversary! I’m celebrating 8 months now and life has been great! Only in the last week has my stomache been bothering me, but I think it has more to do wi diet and too much stress at work. Just did my first mud run this weekend to ring in my “dirty 30” birthday, it is tomorrow the 28 th if anyone wants to send me a present! Ha ha ha. No way would I have been able to do that a year ago. I am so grateful to you for writing your story, as I have said to you many times, you have been and continue to be such an inspiration. I love your humor and appreciate it so much as well, this journey has been tough, but reading your stories has been a joy. So happy for you and your family! I bet your wife and son are glad to have you back!
Thanks Emie! I read your stories and get excited for you too! I’m so glad everything has gone so well for you… and now your doing Mud runs!!! That’s awesome! I may have to do one of them sometime, I’ve heard they’re a lot of fun. It’s been nice to see your progress and kind of “go through things” together. I wish you continued health and happiness… and HAPPY BIRTHDAY!
Thanks Blake, hey did you ever get c-diff? I spent the night in the hospital last night with my first and hopefully last bout of c-diff.
Hey Emie,
I was fortunate to never get C-diff. I was told I had it at one point when I still had a colon, but the doctor later said I did not, it just looked like I did cause my colon was so nasty. I’ve heard that it is pretty horrible so I hope you’re not in the hospital too long and they can get things back under control for you, good luck!
Hey Blake,
I left you a post on one of your earlier stories. Its been awhile since we have communicated but I have my takedown in 2 weeks and thanks to all of your updates and comments I am ready and now know what to expect. The loop ileo/temp stoma is a great pain in the ass (no pun intended) just like you said it would be. I am feeling great now pre takedown and hope to feel this good soon after. How soon did you go back to work after the takedown. Since my office is in my home I am thinking about 1 week off is all since the shitter is just in the other room. Need to keep the paychecks coming and my bosses happy. Glad you are still doing well.
Mike H
Hey Mike, yes I remember you. Glad to hear things moving right along for ya! Get some Calmoseptine lotion for that ass crack bro! You’re gonna need it for a while. But you’ll get through it. I went back to work I think a month after the last surgery. I can’t work from home though (with I could). If I had an office at home, pretty sure I could’ve started a week after surgery as long as that bathroom is pretty close. You’re going to have a lot of gas pains that will make you feel like you have to go to the bathroom, in a ways it’s a lot like UC in those first couple weeks. But you’ll survive and things just get better and better with time. Keep us updated and make that money! Good luck!
It’s been more than a year after my last surgery. I still have accidents at night. I’m 19 years old.
Hey Keith,
How often does that happen? I have a buddy with a J Pouch and he hardly ever has that happen. I know I’ve had some minor accidents, but for the most part I’m good. I definitely see a correlation of when I eat late at night, an accident is more likely to happen. I try and not snack anymore at night time. That seems to help. You should try taking some Imodium before bed. Also, drink some Metamucil with your last meal of the day. I haven’t done this lately, but I used to everyday when I had the ostomy bag. It should help slow things and thicken your stool. Definitely mention it to your doctor and see what he/she has to stay.
hey blake,whats up old bud,its been a year,i was right behind you by 2 weeks,glad to here your doing great,im doing great myself,no leaks at night at all,in the can like 5 to 7 times a day,but if i eat light and small meals 5 to 6 times a day its better,i hit the can at 5am before taking a shower and im good till like 2 or 3 but i skip breakfest ill eat something at like 11,then a good lunch and dinner,i also bought a pepperidge farm cookie route,so im even eating a ton of that stuff too…take care bud..Rico..
Hey Rico Suave! I remember you bud, glad to hear that everything is good! Yeah, we went through this surgery crap about the same time. My shit schedule sounds a lot like yours too. I almost always wake up around 5 to use the bathroom in zombie mode and then slam my ass back in bed for a little bit longer. Haha! I do definitely notice if I eat light, I have a better day. It’s nice to eat what you want again and not pay holy hell for it. Awesome to hear from you man, take care!
Hey Blake you old bud,how’s it going?been over 2 years now feeling great?i only check up on here once in a while,but I have to say everyone with uc on this sight should get the jpouch surgery?? It’s the way to go?meds and bullshit diets don’t work!!!!! Surgery is scary and gonna be hell but when it’s over u move on with ur life!! Hey hope ur well bro,doing a hell of a lot of fishing!! Peace out kid !!
Hi Blake,
You have a beautiful family and are very brave. Thank you for sharing your story and your honesty. I’m sure the surgery option is no walk in the park. It does appear that you have gained your life back and are able to enjoy the simple things again.
The prospect of surgery is always a scary one. Your shared experiences are a comfort. I think we all miss the confidence of being able to pass gas without the worry of things going to far!!!!
I just wonder if, after your surgery did you have to modify your diet in anyway? Are there any foods that it is just impossible for you to digest?
Hey Juliet,
First off, I eat gluten free. When I had UC, I made the doctor test me for Celiacs because my sister has had Celiacs since she was 2 and my mom always thought I did too because of my bathroom habits. So I was tested and found out I had Celiac disease. I started eating gluten free right then and never looked back. Other than the gluten free diet, I really have not modified my diet much. I never was a huge fan of green leafy vegetables, so you won’t see me eating too much of them anyway, but I can eat them without too much trouble. I’ve even ate peanuts quite a few times which I thought I would have trouble with because of the no colon issue, but hey…. I’m fine with peanuts too. A lot of stuff doesn’t digest, like corn and some other vegetables, but I can still eat it if I want to. I eat corn on the cob pretty often. So I guess to answer your question, no. I really haven’t found anything that I won’t eat… as long as it’s gluten free. Good luck!
hi Blake! name is Rob i’m 24 years old and been living with Ulcerative Colitis since I was 19 years old. Thanks for sharing the story Blake good to hear what comes with the surgery from someone who has gone through all the shit that comes with it never an easy go but your life improves 1000 fold. I just had the surgery to get the stoma a week ago, not an easy go LOL! but as you say things can only get better. I was hitting the can 30-40times a day bleeding like a S.O.B but once I got the surgery things are only looking up. Im going for the j-pouch most likely a year from now if things work out. Really looking forward to getting back into the weights once again myself went from 220lbs a month ago to 201lbs prior to surgery now 175lbs after the surgery, looks like you havn’t lifted a weight a day in my life but an easy bounce back I know. Also nice being able to eat like a bear again too hahaha. Anyways Blake its good to hear from someone else who has gone through all the stuff iam going to have to go through and what to look forward too lol!! Cheers man take care!
Thanks Rob Lee, you hang in there. It’s really easy to put weight back on after the surgeries so don’t worry about that. It’s almost impossible not to gain too much weight. I know I had no trouble gaining all the weight back each time. You will probably be complaining that you’re too heavy a couple months after surgery. I hope things continue to improve for you and you can get back to the gym soon. Good luck buddy!
Hi Blake,
Wanted to thank you for your posts about your journey with getting rid of colitis and having restorative surgery. I have followed your story, as well as a few others, and I wanted you to know that I will be thinking of you and all the others on Sept. 12, 2013 as I go in for the first step surgery. Hopefully mine will be complete in a 2-step. Your story has given me the strength to say..”if they can do it, so can I.” I’m a 39 year old mother of 3 daughters, ages 10, 8, and 3 1/2. I have battled this horrible disease for 3 1/2 years now. It has taken a lot from me and held me hostage at home…I’m tired of it, and even though I’m excited, I am scared. I’ll keep re-reading your story for encouragement and I’m so glad that you are doing well. Thanks being “real” in sharing your story, but also being positive.
All the best- Diana
Hi Diana,
I go in for my final takedown step 3 on 9/11. I can tell you that regardless of the step 2 or step 3 procedure the first surgery is tough the first few days out of recovery. Take your pain meds and listen to every word the stoma nurse tells you and watch them very closely when they go through the bag changing procedure. I did not not and paid for it with a nice sore skin infection. Make sure you ask for some hollyhesive as an extra barrier for your skin just in case. This stuff works magic on any rash may you get,
Good Luck.
Mike
Yo Mike H,
Good luck brotha! speedy recovery to you post 9/11 too:)
Mike,
Thanks for reaching out to me, I appreciate the advice. I will keep all of those things in mind! Good luck on your takedown 9/11- I’m sure it will go great. I’ll be thinking of you as I’m “prepping” that day and getting ready to go in myself.
I look forward to your j-pouch update soon…and hopefully I too can report back with a successful and smooth update. Thanks to all of you who have shared your stories and been a source of encouragement for me.
Diana
South Lyon, Michigan
Thanks Diana,
I’m excited for you! I can’t wait for you to feel normal again, it WILL happen. A mother of 3 should not have to worry about her colon all the time, you’ve got bigger things on your to do list. I hope everything goes well for you and hope your daughters take care of you those first couple weeks! Good luck!
Thank you Blake for the well wishes, it means a lot. I had to really take myself out of my comfort zone to even post a comment on here, and I’m so glad that I did. I really appreciate you and Mike reaching out to me right away and sending back words of encouragement. It made my whole day! It’s nice to know that you are all here incase I should ever have questions about anything-as I begin this process. I know that you all really understand, because you’ve been through it.
Diana
South Lyon, Michigan
Thanks Diana! By now, you have probably already had your colon removed. Congrats! Now all you have to focus on is recovering. I hope surgery went well and you are getting used to your ostomy bag. I hope your feeling much better already although I’m sure you are still in a lot of pain. It will get better. Good luck to you and let us know how it goes!
Yes, Blake, I am home and recovering. I thought of all of you here on this site on that day ( it was scary going in) but you were all an inspiration to me. I sent a reply out to Mike’s story last week that will give you more detail on my personal experience…but overall- everything went well, I’m home, still a little sore, but feel AMAZING that the disease is GONE. I don’t like the ileostomy bag at all. There is just nothing attractive about this thing…but it is what it is, and the goal is that it will temporary- so I can get over it if it means feeling 100% better than before, right. Trying to keep things in perspective. The first surgery was rough and I lost an additional 6lbs while in the hospital. But I am gaining it all back now, and quite quickly. I really hope the 2nd step )or final step for me) – is easier. I will continue to reference all of your stories and zero in on the specific details of what to expect as it gets closer. Possibly January for me. It’s nice to know you are all here if I run into questions down the road here. Thanks again….and I hope you are still doing well with your Jpouch. I’ve never asked my surgeon, but I wonder how long these pouches last? Life, I hope.
Diana Hindley,
South Lyon, Michigan
Thanls Man, I am anxious and excited about the next step. I will keep you posted. Did you ever get your cut or are you still sporting the 70’s look lol.
Mike H
Hi Blake,i read your ‘s Curtis ad Magen s storys,i went for liproscopic surgery to remove my colon,im suppose to gt two surgery.
I hv it on 20th aug 2013 ds is totaly difficult recovery for me beacause ihv infection and endup in icu,rinse my intestine twice due to that.now m in ward but still cant sleep.my question is does anyone has this problem like mine?n do your stoma throw out most of what you eat?and whn vl my stoma gt lessser its been 4/5 days since my
last intestine rinse.and does sm kind of motion/mucus comes from ur anus sometime?
Please anyone also can answer. My colon was bit perforate thats what my surgeon toldme.now m hoping to sleep well and get better soon.
Hi Colney,
I’m not sure what a intestine rinse is because I’m not sure if I had one. Yes, mucous still came out of my rear, it’s pretty common. I would still get the feeling like I had to take a crap once or twice a day. Pretty normal stuff. I hope you’re recovering well!
Hi Blake,
Just a quick note. I am 48 hours post takedown and may be leaving the hospital tonight hopefully. My pouch is up and running. I have gone 4 times in the last 24 hours but that is on a hospital diet and it seems very easy to hold it until I wanna get up. I have my lotion ready for the lava burn battle and instead of a bidet I am going to order a toilet seat with handles that way when I have one of those days when my knees are acting up I can get in and out easier. I have yet to have any gas pains because my J Pouch is farting up a storm. It is not like the old time farts when I was loud and could clear a room, now its a fart that new borns make just little squeeky things, lol.
Mike
Glad to hear that you don’t have gas pains. Maybe you’ll be lucky and won’t have to go through that part cause it sucked! I know exactly the kind of farts you’re talking about. Very slow, careful farts, not really pushing it out, but letting it escape. Feels good to get that gas out. Good luck Mike!
Hello Blake,
I truly admire your outlook on life – it reinforces the power of being positive and what a gift it can be.
I noticed that you were on prednisolone and was hoping to get some feedback on what that experience brought you. I took my son who was 16 yo at the time to a dermatologist for acne treatment over 3 years ago. He put him on prednisolone only he forgot to take him off it. After one year on this medication, my son stopped taking it abruptly because he felt it was the cause of his physical problems. I feel this medication has affected his beautiful body in so many ways but doctors simply refuse to make any judgement in fear of exposing this doctor and my son is a real ‘no fuss’ guy and just wants to move on. I am anxious to know whether it has affected his genitals/erectile and reproductive functions. He has not had a girlfriend and he is an extremely good looking 20. year old. He has also contracted glandular fever and golden staph and constantly gets colds. He had a cortisol reading done recently and it was 664. I have been given conflicting advice on what ‘normal’ is and am worried what the consequences of this level might be for him. I realise that you are not a medical expert, but i think you are in a better position of providing information on this than they are as they are dismissive and incongruent with what they advice with what actually happens. My son is scheduled to have a mastectomy as he has a man boob. He also has extremely thin, wrinkly skin and a pouch on his abdomen. These are a few of the visible physical consequences to which a specialist doctor advised would all be remedied over time. However, time has not corrected any of this and, thus, makes me wonder what other issues have been irreversibly bestowed on my boy. I would truly appreciate any information on what you have experienced and what you know about the long-term effects of this medication. Thank you so much Blake. I hope with all my heart that you continue to have love and light in your life. Warm regards, Sue.
Thanks Sue! Very nice of you to say. When the doctor first prescribed me steroids I honestly thought that it was going to be awesome because I lift weights all the time and figured if the doc is gonna prescribe me steroids, I might as well take advantage of this as I would never do them any other way. Little did I know they would give me no advantage, actually they would do the opposite for my weight lifting. I took pretty heavy doses or Prednisone for the majority of a year. I read all sorts of horror stories about this drug. As a matter of fact, my doctor told me that Prednisone was by far the worst drug that she prescribes people. After researching the massive list of side effects this drug causes, it got me kind of worried. There is weight gain, brittle bones, moon face, mood swings and just about every side effect ever recorded in medical history it seems. So I feel for your son as it’s a bad drug. For me, all I can remember is being extremely hungry all the time, my face was puffy and I think I had roid rage here and there. So it wasn’t too bad for me. I think the fact that I still went to the gym normally throughout my UC really helped to maybe mask some of the side effects. In fact, going to the gym was just about the only thing that made me feel normal when I was going through UC. The worst part about it was that I was taking high doses of steroids and I honestly don’t feel like they helped my UC in any way. I was still crapping blood 15-20 times a day one them. I was taking Asacol and was self injecting enemas up my bum every night also. I still ended up getting my colon removed. Of course, if I could have predicted the future back then I would have opted to get my colon removed after that first bloody stool and saved myself a lot of grief. I’m very luck in a way that I didn’t have more serious side effects with this drug. I know that stopping prednisone cold turkey is very bad. You are supposed to taper off very slowly. Is your son still on Prednisone? Hopefully the side effects are reversible over time. I do not feel like I carry any side effects now from all the drugs I consumed over my time with UC. I really hope your son gets better over time too. Good luck to you and your son!
This is really great that you’ve shared your story (along with pictures I may add)!! I’m currently healing from my first of two surgeries to get my j-pouch. I’m only 22 right now but I’ve lived with UC for 12+ if not my whole 22 years of life. The amazing people I’ve met through those years related to IBD are so amazing and inspiring and I wouldn’t take a single thing back. If I could go back in time and change the fact that I got this awful disease I would take it again. It’s changed my life and I’m such a better person because of it. I hope that one day I can change someone else’s life like mine’s been changed. I can not wait until it is reversed and I’ll finally have your typical college student life back.
Hi Blake! So happy to hear you’re doing well. It’s a lil over a week since my 2nd surgery and my butt really hurts so badddd. I don’t think they removed the rectum yet but I was wondering if yours hurt like hell? Like it hurts so bad that I have to take a pain killer every 4hrs. Does this sound normal?
Hey Blake, thanks for sharing your
story and pictures. I admire your
positivity towards life and so glad you’ve made a full recovery and feeling great again . I’ve only been
Struggling with this crappy diasese for just over a year now. Two major flares both ending in hospital. Been on loads off meds but surgery looking likely next year. Reading your post, puts my mind at rest a little so a big thank you. Me too, I am massively into weight training so it’s good to know life can continue. Well thanks again, and very best wishes
Leighton
U.K
Blake,
How the heck are you??!! I haven’t been on here in a while. I’m glad you are doing great. My is post take down for like a year and done change. It’s the best decision we’ve ever made. He’s not chained to the toilet as much. I don’t monitor his poop anymore. That was a total stealth mission. I don’t know if is bleeding, so I don’t know a lot of things. Here’s still sugar coating his real situation, but his weight is up. He’s super active in our kid’s life. I will tell anyone who this disease that this surgery is the best! The only drawback that I can see is he’s still having accidents at night and isn’t getting good rest. We’re going to try the Imodium and Metamucil at night route. I’ve been asking him to keep a food journal, so we can see what’s seeing him off on the days that gut is active… I’m still waiting. I’m super glad we both made it to the other side.
Hi Blake,
Thank you for sharing your story! Huge help to me before I went in for my j-pouch surgery this past August!! I had UC for 16 years, diagnosed at 20. I have been gluten free for 10 years and this help my UC immensely. I am staying gluten free because when I did get officially tested I was already on the gluten free diet, and that’s a no no for an accurate test of CD. I know I will re-read your story many times over as I’m completing the rest of my surgeries for support! You have such a beautiful family and are truly blessed!!
Hey Blake! That’s a wonderful story I actually went through the same problem you did back in June I got sick they couldn’t figure out what was going on they said I had a flu so they sent me home with pain medication and that wasn’t working week after my birthday in just shortly after 4th of July I was getting real sick and I got to my doctor’s office and she barely came into the room and notice something was wrong so had me get to the hospital ASAP and she’s the one that actually saved my life. But once I was at the hospital the results came back I have colitis and they rushed me into surgery they said he has know choice to get this done if not then I wouldn’t make it. So they saved my life I had the bag for 6 month’s and they were able to reconnect everything back together I had my final surgery back in January but they said it’s probably gonna take about a year to get my body back to normal but let me tell you I feel lot better now they told me I’m pretty lucky. David
Thank you !!!! My story sounds like yours, i’m postop 3 months and I think it’s the right decison!!!
Just wondering how the J pouch was going a couple years later. Didn’t see anything past 2013. Considering the surgery myself after having UC ruin enough of my life for the past 3 years. Ready to get my life back with my wife and 1 year old son. Anyways, how is life? Feeling good still? Just curious to see if things get better and better as time goes!
Micah,
My hubby had j-pouch surgery in 2012, and he recovered pretty well. He/we could tell a difference IMMEDIATELY. He still runs to the can several times a day, but nothing like before. I don’t know if anyone mentioned that having an ileostomy definitely takes some getting use to. The good thing is, by the time you figure it out, It’s time for take down. Then the fun really begins. That’s the part where you feel most normal. It can only get better from there. Or at least, that’s been our expertise. Best of luck to you on your journey.
Don’t know if you are still following this post Blake, but if so, how are you makin out these days?