Hi All,

I've posted here in the past as LC but for some reason I can't access my old profile. Anyway, I've been battling a flared up fistula for the last 3 years and after lots of scopes, dilations, antibiotics, and an abscessed seton stitch, it looks like a probably diagnosis of some sort of Crohns in my j-pouch. For the first time since I've had my pouch (18 years!), my GI doctor saw small ulcers in my pouch although I don't have any in my small intestine (yay????). We are waiting on pathology. My pouch has progressively been getting more finicky since the birth of my daughter 3 years ago. I don't know if pregnancy/post-pregnancy did something to my immune system but its absolute shit. Anyway, the specialist I saw at the UMD (Maryland) IBD clinic thinks its likely I have some sort of Crohns and said that I need to be on an anti-TNFalpha.

I am not at all pleased with this but feel stuck because I clearly need to do something about the fistula. All of my recent pouch issues can be traced back to the fistula being inflamed but I don't know if its a cause or an effect. It is also slowly destroying my marriage- the grumpiness associated with having an inflamed butt, the ick of being on nasty antibiotics, the lack of sex from having an infection right next to my vagina, the time to sitz bath almost every day... My husband is completely done with my health issues (and bitchiness over them) and is threatening to outright leave me or force me into an open marriage he can at least have sex with someone... 

My doctors indicated that its a life long commitment to taking anti-TNFalpha drugs. I don't want to be immunosuppressed for the next 50+ years of my life (I am 33). Has anyone used Remicade or Humira for a fistula or J pouch ulcers? I am curious how you responded to it and if you decided to stay on it? Have you had serious complications from the medication? I have a 3 year old and I do get a lot of mild respiratory diseases from her. I also work in a field where I was planning to work with human pathogens. My plan was to work in vaccine/drug development but I would need to be able to pass a physical to do this (and receive live vaccines). I have a MS in immunology and microbiology, about to receive a PhD, and I have papers in this field... I feel like the rest of my life is going to revolve around having huge amounts of money/insurance to cover the drugs, cancer screenings, panic about fevers, being around for infusions, and avoiding infectious disease/being stuck at a desk. Anyway, thoughts about how you dealt with these drugs would be appreciated. 

Original Post

I have been on Remicade for 3 years. It’s improved my Pouch inflammation considerably. I have not had any side effects from Remicade nor have I shown any signs of being immunosuppressed, although I had a cold in October 2017 which was the worst cold I ever had in terms of intensity of symptoms and also lingering for around 3-4 weeks. That was seemingly an aberration as I really haven’t been sick before or since, although I don’t have kids that might expose me to various microorganisms.

If you are 33 years old I wouldn’t be too worried about getting immunosuppressed. Like a lot of posters on here you have pre-judged the situation, possibly to your detriment. You don’t know how it will be on biological drugs until you are on them. Many people do VERY well on them with little or no issues.

I am 33 too, have crohns and a jpouch and take remicade once every four weeks. My GI says it's either this or likely lose the jpouch. I don't like either choices. With the remicade it's keeping the ulcers at bay, for now. I do get sick a lot. But I'm also on methotrexate. If you take remicade you'll also have to be on an immunosuppressive. Sorry about all the crap you're going through with your husband. That's rough. Speaking with a relationship counselor may help. I don't know. Dialogue is always good, I guess. Feel free to DM me anytime for any questions.

Do both of you take an additional drug besides the remicade? The specialist I saw suggested combining it with azathioprine or 6mp. My impression is this might work faster than remicade alone and reduces antibody development against remicade? It looks like it increases the risk of being immunocompromised and has additional unpleasant side effects though. 

I take methotrexate 15 mg once a week which is designed to suppress renal secretions of the Remicade and also take prescription folic acid to counteract the effects of the Methotrexate. As I said no issues and all of my blood labs are clean for 3 years. I should note that Imuran sent my liver chemistries haywire in the 1990s but no such issues with these meds.

You keep talking about “unpleasant side effects”, I have had none in 3 years. I see many many patients in the Remicade room and while I don’t know what their specific histories are they all have IBD and all report doing well. I have been in Remicade rooms with 4 patients at a time every 6 weeks for 3 years and never witnessed any infusion complications either. 

You also shouldn’t worry about antibody development because if it happens you go to Entyvio or 2-3 others. There are many biological drugs that can be used in lieu of Remicade. Talk to your doctor about it. We discussed Entyvio as my plan B but have never needed plan B. Plan C and D were also discussed. Still on plan A so I don’t worry about those things. 

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