Experience with J-Pouch Crohn's, Stricture, Seton, J-Pouch/Vaginal fistula, Humira? HELP!

Hi Deslene.

I know I’m going to scare you with what I’m about to say, but it is a reality you may have to face. There’s a caveat to using a biologic when there is a stricture. It actually may make the stricture worse. This ultimately led to my pouch failure when I went on Stelara, but my stricture was at an even worse spot than yours. Mine sat at the pre-pouch area, and nothing could pass through anymore into the pouch. Ultimately this led to my pouch failure and and I now have a permanent ileo. Now hearing this information, you probably think that you do not want to start Humira, but you also need to treat your inflammation. For some people, diet alone will not control the inflammation. As in my case, it was due to stress. I went on bowel rest too, and that alone did not help my inflammation either. What’s controlling it now is Stelara. 

Good luck with your treatment.

-Rina

From DELENE: Wow, Rina. I hadn't even thought of that. I think I'm going to hold off. I know everyone is different, AND I know that diet alone can't change. Stress is a big factor, and I'm working on de-stressing many things in my life.  I would love to talk with you. Is that possible? I do not want to lose my pouch. I have healed 3 other fistulas by fasting and I'm determined to do the same now. So you're saying you're on Stelara now, but didn't that make your pouch worse and led to failure? Thanks SO much!

Hi Delene. Stelara didn’t make my pouch worse, but it did considerably lessen my inflammation. The stricture is what led to my pouch failure. From my experience, it’s just a matter of time before pouch failure become inevitable with Crohn’s. I suffered 3 years with inflammation. The doctor here thought that it was only pouchitis. I think in the end, once the inflammation started, it was only a matter of time before it did me in. Fasting can only do so much for inflammation. Actually, I fasted for too long, and now I am unable to eat. I’m fine with the ileo though. I guess in Japan there is a perk that I am now on disability. 

Feel free to contact me anytime. A ton of people on this site are very scared to go to the bag permanently, but I must say it isn’t bad. I just turned 33. I’m considered very young to have my pouch removed. I’m very lucky to be able to work again. I hope you can find a solution for your treatment. 

I'm scared to death to go permanently to bag because when I had the temporary ileostomy the bags never stuck to my skin regardless of different types of bags, creams or adhesives I tried. ☹

Rina, did you say that Stelara made your stricture worse? I am so wavering about which biologic, if any, to start, and ONLY for up to 6 months for me. I don't want to suppress my immune system forever! Nor take antibiotics. Those all lead to more problems. I also have psoriasis, but it is in check right now. So which one? Humira? Remicade? Stelara? I'd appreciate all the help to decide and I really appreciate all of you!

Scott, I'd love some of your advice too, you always also seem to have good advice!

My advice is that inadequately treating significant issues also leads to more problems. We don’t have natural GI tracts anymore, and we often can’t rely on natural remedies. In the vast majority of cases when a medication causes problems the solution is simply stopping the medication. Avoiding a *necessary* medication because of potential problems is a recipe for needless suffering.

You are always voicing good reasonable advice. Yes, you are right. Now, big question: So which one? Humira? Remicade? Stelara? I also have Psoriasis. I know Humira you can do yourself, and Remicade you have to be infused at Dr. 

I do not have Crohn's but I do have a j-pouch and developed several abscesses and a fistula that lead to a Seton last August.  The seton is basically a large looped stitch that holds the fistula tract open and allows the tissues to heal ie; not form another abscess.  It was painful for the first 3 weeks (but then again I went back to work full times 4 days post placement).  After that it is just plain annoying.  I do not have to take any medication for it.  There is constant drainage (very little) and I just wear a panty-liner.  This July my CRS is going to take out the seton and place a porcine plug in the fistula tract to try to close it up.  I do know some folks with IBD have several setons at the same time.

I also belong to a Facebook group called "Fistula Support Group (Colorectal)". It is a closed group.  There are many folks there who are going through a myriad of issues.  You may find some helpful answers there.

Good luck and good health,

Michelle

Oh goodness. Thank you. I don't know if you're in the States, but I'd sure love to talk. I'm in CA. I'll join that group.

There are certainly some significant convenience differences between the various biologics. The best one is the one that works, though, regardless of convenience. Remicade may have the best evidence that it can help with fistulas. Your doctor may have up-to-date information on which medication is most likely to help. That’s where I would start.

Yes, that is the one she is leaning towards, because she can adjust the dosage. Thanks Scott.  

I live in British Columbia.

Michelle Merry