Crohns after j-pouch
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David
Co-Founder
I haven't experienced it personally, unfortunately it does happen from time to time. Usually this is a matter of not actually having Ulcerative Colitis but instead having Crohn's disease all along.
I'm sorry you're having to go through this
How are you doing?
I'm sorry you're having to go through this
How are you doing?
David
Co-Founder
Ugh, that's terrible that you're not doing very well What treatment regimen do they have you on? What are your symptoms?
All my best to you.
What treatment regimen do they have you on? What are your symptoms?All my best to you.
Right now I"m on antibiotics because they want to start me on Humira. I also take 20 mgs of prednisone a day, and welchol twice a day. I have constant cramping...fever, rheumatoid arthritis symptoms, but no rheumatoid arthritis. I am a little apprehensive about having to start Humira. So many warnings! I've tried several infusions of Remicade back about 10 years ago and that was not succesful. You name it, I tried it. None of this was suppose to happen once I had the surgery.
What about you? Do you have UC or Crohns? Do you follow a strict diet? The doctors always told me I could eat anything I wanted before the surgery. After the surgery they said pretty much the same thing, excluding nuts and raw vegetables. Nothing I eat sits right. Doctors! I guess that's whey they call it a practice...
What about you? Do you have UC or Crohns? Do you follow a strict diet? The doctors always told me I could eat anything I wanted before the surgery. After the surgery they said pretty much the same thing, excluding nuts and raw vegetables. Nothing I eat sits right. Doctors! I guess that's whey they call it a practice...
I'm sorry you've gone through all that flanchr. D: As for helping your abdominal symptoms, if you are in fact in a flare, the Low Residue diet seems to be quite popular. I go on it myself as well during a flare.
Since you did use Remicade for a while in the past but it didn't work for you its very possible that Humira might help. I know when I was on it I thought it was going to be the best med I've ever taken. Unfortunately for me I get getting upper respiratory infections so now I'm trying Remicade. Other than the head colds it got rid of all my pain including my joint pain so I definitely think its worth giving a shot (not everyone gets the upper respiratory infections though). Have you tried Cimzia? I'm told that if the Remicade doesn't work for me then that's the next one I'll be put on.
Keep us posted on how you're doing.
Since you did use Remicade for a while in the past but it didn't work for you its very possible that Humira might help. I know when I was on it I thought it was going to be the best med I've ever taken. Unfortunately for me I get getting upper respiratory infections so now I'm trying Remicade. Other than the head colds it got rid of all my pain including my joint pain so I definitely think its worth giving a shot (not everyone gets the upper respiratory infections though
). Have you tried Cimzia? I'm told that if the Remicade doesn't work for me then that's the next one I'll be put on. Keep us posted on how you're doing.
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Welcome to the club! But with me it was 25 years later! You actually have Crohns Colitis, which is Crohns disease in the colon- there is a small percentage of us around. Sometime Crohns in the colon looks exactly like UC- remember, nobody knows what the real cause is. It happens. I had 3 years of j-pouch surgeries and gave up after having a dozen surgeries to fix them. So, you have an ileostomy now correct? That will actually make the Crohns easier to deal with since you won't be rushing to the bathroom. Also, if a doctor needs to put a scope inside your stoma to look around, it's MUCH better than going in the other way. Definitely sucks to be told surgery is a "cure" (been there myself), but it's not the end of the world. Just more maintenance and doctor visits. I'm sorry you couldn't get a long period of remission in between like me, but I'm the odd one around here- just ask 2th Fairy. :biggrin:
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I haven't experienced it personally, unfortunately it does happen from time to time. Usually this is a matter of not actually having Ulcerative Colitis but instead having Crohn's disease all along.
I'm sorry you're having to go through this
David, you used the word "usually", but how could it be any other way? From what I've learned, you don't get cured of UC and then by bad luck, get Crohns later on. If it was Crohns now, then it was Crohns (or Crohns Colitis to use the other term) before, no?
David
Co-Founder
There are reports of people having both Ulcerative Colitis and Crohn's disease so it's possible the OP has had both. Whether those reports are correct or not, I don't know for sure but that is what was going through my mind with the, "usually" disclaimer. Statistically speaking, the OP had Crohn's all along and that's what I believe happened here.
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There are reports of people having both Ulcerative Colitis and Crohn's disease so it's possible the OP has had both. Whether those reports are correct or not, I don't know for sure but that is what was going through my mind with the, "usually" disclaimer. Statistically speaking, the OP had Crohn's all along and that's what I believe happened here.
A ha, so the debate isn't over yet it seems. I've heard many say it's impossible to have both. Doesn't really matter to me much, but I do find it very interesting. Thanks!
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There are reports of people having both Ulcerative Colitis and Crohn's disease so it's possible the OP has had both. Whether those reports are correct or not, I don't know for sure but that is what was going through my mind with the, "usually" disclaimer. Statistically speaking, the OP had Crohn's all along and that's what I believe happened here.
Want to take a guess what happened to me? I went 25 years before getting the second diagnosis. No worries, I'm the square peg in the round hole and i'm fine with that. :biggrin:
David
Co-Founder
I'm not sure anyone can say it's impossible to have both since they don't know what causes either one, but I think it's safe to say it's extremely rare if it does occur.
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ameslouise
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Hi Everyone - sorry it's been forever since I logged on.
Flanchr - how are you doing now?
Indeed I was one of the not-so-lucky ones that has been "rediagnosed" as I call it. Originally UC for many years, colon removed, j-pouch for 9 years, 7 of them pretty good. It was tremendously emotional to get the new DX because I thought I was cured! I was treated for pouchitis for a year before I was rediagnosed. So for me, it was too far gone... None of the meds worked for me. I had my permanent ileo in March 2011. Couldn't be happier! Even know, in the throes of a Crohns flare - it's so much easier with an ileo.
Give us an update when you can - hope you are on the mend.
- Ames
Flanchr - how are you doing now?
Indeed I was one of the not-so-lucky ones that has been "rediagnosed" as I call it. Originally UC for many years, colon removed, j-pouch for 9 years, 7 of them pretty good. It was tremendously emotional to get the new DX because I thought I was cured! I was treated for pouchitis for a year before I was rediagnosed. So for me, it was too far gone... None of the meds worked for me. I had my permanent ileo in March 2011. Couldn't be happier! Even know, in the throes of a Crohns flare - it's so much easier with an ileo.
Give us an update when you can - hope you are on the mend.
- Ames
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Ditto what she said. After many attempts of jpouches and over a dozen surgeries, had ileostomy done in my early 20s. Went the next 20+ years of remission, but thought I was cured as well. As po'd as I was to learn I had not been cured, that it seems I had Crohns Colitis originally, I was very happy to have the ileostomy. My flare up last year was painful, but I'm glad I had the ileostomy because I was not incontinent. Hope you are on the mend and feeling better too!
I too have developed Crohn's after j-pouch surgery 15 years ago. Feel very mad about it all and worried about the future! My GI started me on entocort and Imuran with decreasing of steroid and increasing of Imuran. Also have had a recto-vaginal fistula for 4 years that causes me grief and waiting for ventral incisional hernia surgery. Trying to keep strong in prayer and faith. Please let me know how all of you are doing with this Crohn's after your j-pouch surgery and how things progress for you.
Thanks
Club
Thanks
Club
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Hi Club,
So sorry to hear about that fistula issue- yours is in a place I don't have so I can't totally relate. But I am doing well. This flare up I had started in May of 2012. My j-pouch was made in 1987 and I was forced to go with the ileostomy around 4 years later. So, that's over 20 years of no meds before this flare up. This time it wasn't nearly as bad as the first time around. The ulceration was very shallow, just the mucosa layer seemed to be affected. Entocort didn't do anything for me so gave that up, and took Prednisone, Imuran and Pentasa. I came off Prednisone on Feb 18, 2013 and still do not had any symptoms. I only take Imuran (100mg daily) and Pentasa (3g daily) now. Last week I had my first scope procedure since May 2012 (ileoscopy), and there is no sign of disease activity. There are some granular areas that haven't fully healed yet, but it's a small area I think. Granular areas are simply a rough patch, like if I miss a spot when I shave. My doctor told me if he did not know I was diagnosed with IBD, he would not have enough evidence to make the diagnosis now based on the new pictures and he doesn't want to do another scope for 2 years. So, not too shabby right now. However, I'm still trying to lose the remaining 20 pounds from the 40 pounds I gained while on Prednisone. :stinks:
I hope things work out as well for you!
Hobbes
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Same exact thing happened to my sister. 6 years later she got the illiostomy surgery Thursday
I was diagnosed with UC in June 2012, had emergency colectomy in July 2012, my last j pouch sugery in feb 2013 and diagnosed that it was crohns the whole time in march 2013. Finally starting to feel better in August 2013....took em awhile to figure it out huh!?!
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I know this is an older post but wondering if anyone with the jpouch had pain when they were sitting...I have a jpouch for almost 3 years now and having some problems. I think my doctors have talked about possibly diagnosing me with crohns.
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