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31 year old pouch re-diagnosed with Crohn's and have Humira questions

W weezywMember
I had my j-pouch surgery 31 years ago (14 years old) and had 22 years disease free. I was originally diagnosed with UC at 6 years old. In the last 10 years I have been re-diagnosed with Crohn's, which was mainly in the pouch. I now have two strictures at the pouch inlet and one stricture at the pouch outlet. They are mostly manageable, just need dialation every 6-9 months in the past few years. In the last few weeks I have been having more problems. Pain in the pouch and behind the pouch. Not sharp pain, more of a dull constant ache/pressure. I could not get comfortable at all. I felt like my entire stomach area up to my rib cage was compressed (I think full of air). I saw Dr. Steinlauf in NYC, he did a scope and dialation of inlet and outlet strictures 2 weeks ago. This did not help and the pain got worse. We ruled out kidney stones. Got an MRE last Thursday and today found out there is inflammation in the mid-section of my small intestine. So, yes, I really have Crohn's now and it is beyond the pouch. My problem is I have been on antibiotics for the past few weeks, which usually helps, but I am in a catch-22 situation. The antibiotics form my stool so that I am having trouble emptying the pouch (and trouble getting the bowel to enter the pouch too). When I go off the antibiotics I am running to the bathroom, but at least I am going, even though I am still not emptying the pouch correctly. I am not passing gas. Talked to the doc tonight and he thinks I should try Humira. At this point I am willing to try anything. I just feel rotten and uncomfortable, but I am still functioning, going to work everyday, etc. Has anyone had similar problems? Any potential solutions? Is Humira a good option for this situation?
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Scott FScott FMember
You've got a couple of separate questions going. Focusing only on the formed stool problem, there are plenty of ways to loosen stool, even if you're on antibiotics. Grape juice is often recommended, and folks who've done this more than I have will have additional suggestions. If the antibiotic is also proving to be an inadequate treatment, that's a separate question, and I defer to others with more Humira experience.
Last edited by Scott F
ElmerFuddElmerFuddMember
If you are having these problems, and you now have a Crohns diagnosis, then by all means Humira is a good option for you. Probably sooner than later since it seems when we can catch symptoms early we can more easily put them into remission. Humira is a biologic, immune-suppressing med that is used to treat Crohns effectively for some people. I believe there are a number of Crohns j-pouchers on the board, some of whom are on Humira.

My daughter tried Humira for her UC when Remicade was ineffective. She hated it because of the serious burn at the injection site. The standard Humira dosing comes in a self-contained pen (like an epi-pen) that injects at its own speed. So not only did it burn for her, it had to be left there for a prolonged period of time. Jan Dollar has experience taking it and was able to get it in a vial and do her own injections via standard syringe where she could inject slowly thus limiting the burn factor.

If I were you, I'd go for it and see if it helps.

Steve
Jan DollarJan DollarModerator, RN, retired
I was on Humira for a number of years, but not for Crohn's. It was for IBD related arthritis. My main complaint with it was the significant stinging during injection.

What made it bearable was using the prefilled syringe instead of the autoject pen. That allowed me to stop the injection when the stinging started, and resume it slowly after the stinging stopped. With the pen, once you push the button, the injection goes until all the medication is in.

I also found injection into the thighs would sting much more than the abdomen. Icing the site helped, and letting the syringe sit at room temperature for an hour also helped.

I had no other side effects, including liver, bone marrow, or infection related issues while I was on it for about 5 years. I even had uncomplicated surgery while taking it.

I am now taking Simponi, mostly because it is a monthly injection (I had to take Humira weekly). It also does not sting. However, it is not approved for Crohn's (at least not yet). It is just approved for UC.

Jan Smiler
Mental KaseMental KaseMember
Greetings Weezyw

Wow, a 31 year old Pouch, and I thought I was among the Veterans at 21 years out. In 2011 I was having issues, Small Bowel Obstructions and feeling really awful for months. When I finally landed in the ER I was Dx'd with Crohn's that resided at the Pouch outlet primarily and a bit of activity at the inlet. It seemed odd after so many years to have Crohn's develop but I understand that chronic inflammation for 2 decades can cause all sorts of issues to surface. Actually, they were highly focused on the possibility of small bowel Carcinoma until that was ruled out.

I was started on Humira, 40ml, pen. and we have since added Azathioprine to the mix. I seem to tolerate Humira well, don't really notice its effects one way or another -unless it is the true cause of this unreal fatigue and joint pain that have set in. My system still feels fragile, and prone to gone off which it has several times while on Humira so it may not be very effective for me overall.

As Jan says, when the 'stick' is good it's uneventful, but when the 'stick' is bad, ugghh, makes me nauseas thinking about that pinching burn.

MK
J JsuffererMember

I have the same weezyw. I suffered with misdiagnoses since I was a teenager then they said I had UC then medication stopped working and to fix it was to have a Jpouch. Had it in 2010 now I have been diagnosed with crohns. Frequent toilet, cannot eat so many foods I once did as they don't break down and also make me feel like I have razor blades coming through and eaten chilli. Used to live on gastro stop then stopped that and tommorow a nurse visits to start me on humira and how to use it. Very very nervous every with so many questions. If it doesn't work for me my next step is everything g out and an iliostomy bag on. Giving it a go. I have heard a few people are successful on it. I am so glad that I have found someone the same as me. If you choose to go on it can you please let me know how you go. If anyone out there in the same way can anyone answer these questions. 1. Will humira just take away inflammation and put me into remission? 2. Will I be able to eat all the things I used to without any ill side effects? 3. If these are true then all is good but if it only takes the inflammation away am I still limited to certain foods without the major pains? I hope you get the result you are looking for weezyw and hope you keep in touch with any results or answers. Thanks for posting

deweyjdeweyjMember

new thread to me, so maybe I can offer some insight. my dx morphed to crohns about ten years ago, tried Remicade successfully for about a year and a half and then Humira, inject weekly, added small methotrexate (similar to Azathioprine described by someone else above) 4 years ago and have been better albeit not perfect since. It should help, will you be able to eat anything? I don't know, I don't each much fruit nor vegetables as they run right through me, but as opposed to others I can tolerate meat just dandy. good luck with the Humira, it does sting, but the upside is that sting is for about 8 seconds. some people find letting the injection warm to room temp helps, I notice it sometimes does sometimes doesn't. I live with the sting because generally speaking it tamps down my bowel activity. others also suggest icing the injection site to numb the area before injection. good luck I have been taking Humira for 8 years now. and while I still fight the possibility of reverting to a perm ileo, so far ive dodged that bullet.

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