Aphthous ulcers in pouch

I was just  re diagnosed with Crohns and Cuffitis after having the Jpouch for a year and a half. Crohns is in the terminal ileum. I am on Remicade, Methotrexate, Prednisone and Mesalazine tabs. I have no useful information though as I am just going through it now. I feel really sad about it all. I thought my fight was over after the surgeries. 

I think it matters whether it’s crohns disease or something else. I keep seeing people say it doesn’t matter but that to me doesn’t make sense. Crohns is a disease. Pouchitis is just inflammation. Crohns can occur anywhere in the Digestive tract. Pouchitis is just in the pouch. It also matters to insurance companies and programs that help pay for it. Their are also medications that aren’t commonly prescribed for UC, like Methotrexate. And their are meds that aren’t commonly prescribed for Crohns. So it really does matter IMO what it is. 

I’m sorry if this offended you this is the first pouchoscopy I have had., and it was done , because I’m still having issues post j pouch. I’m an RN as well as a patient & it is my understanding that pouchitis would be treated with antibiotics as the initial treatment versus Crohns being treated with biologics. I don’t have inflammation in the pouch just ulcers which was why I asked if anyone had the same and it was something other than CD. I was on Remicaide for 9 months & had a reaction so I was advised I am no longer a candidate for Remicaide, shortly thereafter I had a total procotocolectomy with j pouch so I haven’t been on any biologics since. The reason it’s concerning to me is I was so sick prior to having my colon removed I was repeatedly hospitalized & came very close to dying if it is pouchitis it is less concerning than the thought of possibly having a repeat scenario. I’m not sure why my question seemed to irritate you , but it matters to me . I have been through more than enough in the past 3 years so I certainly would not be doing diagnostic tests if I wasn’t having issues.

MLORN, when I first developed pouchitis it showed up as a pouch full of ulcers. It responded very, very quickly to Cipro. I think diagnoses are more useful than CT thinks, though it’s fair to say they haven’t been useful to him, and I do agree with him that Crohn’s causes more dread than is usually appropriate. In any case, you might want to ask your doctor about trying a course of Cipro first, in case your situation turns out to be responsive to that. Pouchitis usually clears up very nicely after 10-14 days of antibiotics, and it’s possible that you simply have pouchitis. In my case I’ve had to stay on antibiotics for years, but most cases of pouchitis recur much less frequently, and can be managed with antibiotics when they occur.

If Entyvio turns out to be necessary, plenty of folks here have had good results with that, too.  Good luck!

CTBarrister posted:

And BTW Aaron I have taken Methotrexate while diagnosed with pouchitis, indeterminate Colitis and Crohn’s. Messes up your logic a bit doesn’t it?

Calm down fella. Just going by what I read

https://www.crohnsandcolitis.o...ide-for-young-people

Methotrexate is a drug used to treat Crohn’s Disease and occasionally Ulcerative Colitis –

CTBarrister posted:

Methotrexate is a drug used to treat Crohn’s Disease and occasionally Ulcerative Colitis "

 

 

And numerous other autoimmune disorders/diseases.  Methotrexate is taken with Remicade to suppress renal secretions of Remicade.

I said it’s not a drug commonly prescribed for UC and everything I read about it says that too. I don’t know why you’re so angry. 

As far as my diagnosis from UC to Crohns, I had all the classic signs and the biopsies confirmed it. Their was no ambiguity there. As far as me looking for “easy answers” I’m not searching for any answers. I just believe labels are helpful for a number of reasons. Maybe OP isn’t American and doesn’t have to pay for any of these tests. Or maybe OP has good insurance and can take these tests no problem. I mean, it’s nice of you to warn OP that maybe if he isn’t in a position financially to not waste money on tests, but that’s up to them. 

Hi MLORN,

I have a Crohn's diagnosis about 14 years after my pouch was created and am currently in the hospital facing surgery back to a permanent ileostomy. For the last three years, I suffered from being unable to eat which caused malnutrition. During that time, I only had ulcerations at the anastomosis, but I also have severe symptoms of dyspepsia that went undiagnosed. During that time, I did go through a number of tests that also tested for Crohn's, but it did not point in that direction. In the last couple of months, I had a debilitating flare-up that has landed me in the hospital for now about 2 months and counting. I have a stricture just around the tip of the jpouch that ascends into the small bowel. The stricture cannot be removed without removing the jpouch. As of current, the stricture keeps closing due to the use of a biologic (Stelara), so that is why I face going to a permanent ileostomy. Though, there are other people with better success stories with Crohn's and the jpouch, I just happened to have a unsuccessful story due to the placement of my stricture. On the other hand, before I had full-blown Crohn's, I did well with about 13 years with my pouch. I hope you find a treatment that will enable you to keep your pouch despite a Crohn's diagnosis.

Good luck, and hope for your successful treatment.

-RinaJP

Thank you all for your posts. Rina I’m sorry to hear your in the hospital. I am really hoping it doesn’t come to that for me, but my initial disease coarse was so severe. I spent 5 weeks on TPN only & was hospitalized 10x in a year for blood transfusions, and unexplained high fevers. I even spent  weeks in patient for toxic megacolon. It was awful. I had my ileostomy for a year and a 3 months & I was not a fan, however it beat the alternative.  It just scares me to think of all I went through & if it was UC the worst of it should be over, but with CD I feel like there is a potential to end up back where I was. Believe me I never want to go back there not only was it the most painful, humiliating,stressful time of my life, but it was emotionally draining for my family & I. I sincerely wish ou the best & hope you are feeling better soon.

Hi MLORN,

My feeling is that if the CD is treated early with biologics from the get go, you may be able to prolong your jpouch as it is just inflammation at this stage. The game changed in my situation when my CD produced a stricture close to the jpouch which cannot be taken out without taking out the entire jpouch. I currently am on a mixture of food, TPN, and oral enteral nutrition for about 2 months because of the severity of this flare. My doctor here thinks that she is still able to give me a life with my current jpouch, but the more I stay in the hospital, the more I think the permanent ileostomy is a better route to go.

I know a lot of people are freaked out by living with a bag, but to me, it saved my life. Sure I'll be a freak of nature, but I'd rather be a freak of nature because it will allow me a better quality of life. Being in and out of the hospital is no life at all. I suffered 3 long years of not being able to go visit my family in the US because of my condition. This is what fate has decided: that I at some point live the rest of my life with a bag. I'm ok with that. Time and time again in the toughest of times, the bag will end up saving my life again. Sure it's absolutely not aesthetically pleasing to have something sticking out the side of my abdomen, but is it really the end of the world if I have to live with the bag? For me, not at this stage. I'd rather have the bag than be chained to the IV in the hospital...

There's no way to tell what the future holds, but I just hope you can stay positive through your journey. For me, I've already had to make a lot of tough decisions, but have now found my spark of light. Take it one day at a time. Even through tough times, I hope you can find your spark of light.

-RinaJP