Humira with j pouch

Hi Roberta, are you taking it for chronic pouchitis? I've been on Humira for almost 2 years. I had great results with it as far as the Pouch functioning well. No leaks, reduced BMs etc. But unfortunately it hasn't reduced the inflammation in the Pouch as we had hoped. So I'll be moving to Remicade soon. It's def. worth a try though. I had no reactions and felt good otherwise. Good luck!

Brewbirds -

Thank you so much for the response.  I am so apprehensive about starting.  When they biopsied my pouch I did show some inflammation. They had me on Budesonide and it slowed me down immediately. So, they informed me that I would have to go on Humira explaining that the Budesonide was giving me a false positive. It helped me but will not heal me. The Humira would put me in remission. So, it is great to hear from someone that has tried it with some positive results.  I am sorry it did not reduce your inflammation. I had used Remicade (for UC before j pouch).  I tried to get into remission with Remicade when I had UC and it did not work for me. 

I hope you find some relief with Remicade.

Thanks a million -

Roberta

My pouch is pretty pristine with Humira, but it had no effect on my bowel movements (changing them or their frequency). However, I was not prescribed it for pouchitis. Perhaps if you are, and it responds, you might see changes. 

Thank you for your response Rachel.  I, too, have had a fistula when biopsied j pouch they found still some inflammation and stated I have switched to Crohn's disease.  I am just hoping I do not have many side effects with this drug. I didn't when I did Remicade before j pouch.  I was just praying to the ass Gods that I would not have to go on anymore medication when having this j pouch back in 2012.  I have never really been right since the connection.  I guess like you say....."I ask not for a lighter burden, but for broader shoulders".

And I also was diagnosed with PSC (primary sclerosing cholangitis) so....I just need to keep on trucking!

Thanks a million -

Roberta

I am on Humira for inflammation within the pouch. I have been on it for a year without any side effects and my last scope showed only mild inflammation.

I have used Humira for 8 years, 5 years ago we added a bit of oral methotrexate, 7 years ago I went to weekly from the standard bi weekly.

I am likely now reaching the end of the line as my recent scope showed clear and obvious pouchitis, something we haven't really seen since ive been on biologics.

I was put on Remicade initially for amended dx of crohn's which was determined clinically as I was simply having pouchitis symptoms with too great frequency.

Remicade worked initially but petered out after a couple of years.

if you have a fistula then there is no question you need some kind of medication, the medication may save your jpouch. good luck.

Thank you for responding Deweyj -

Started the process today.  Four initial Humira shots then two shots in two week then every other week.  Still apprehensive but I guess it is what it is. 

Roberta

Cas my numbers for inflammation were low too.  That is why I was so apprehensive to start it. I guess I am still thinking I can heal this disease on my own without drugs.  LOL  Thanks for responding.

Roberta

I really have not had any side effects from the Humira. I leave it out for 30 minutes prior to taking it and then inject into the thigh. 

Fistulas do not have a history of self healing. the magic of biologics that to use a very powerful term that I heard from more than one doctor at a CCFA educational symposium is that the biologics can be disease path altering. that's what you want. you want to alter the current path of the disease, medications will help you accomplish that. good luck I hope it works well for you.

Thank you, Deweyj. I appreciate what you said.  Certainly makes a lot of sense...alter the current path of the disease.  I hope I am on the right road with Humira.

Roberta

Thank you, Claire.  Any information I can receive helps me out.  I started the initial 4 injections and seems to be quite an improvement already.  I am due for two more injections on 4/7 and then an injection every other week.  Hopefully, I am on the right road. 

Roberta

I know this has been discussed now 2 years ago but Roberta wondering how your doing on humira now, and how your pouchitis is? I’ve had pouchitis for 2 years now and really didn’t want to start in humira.. same syndromes as you leaking etc etc. Just started last week so no notice on improvement yet. How’s everything going with you experience ???

Milanne, 

I have been on Humira for a year and a half. I have noticed it working. We had to add 6mp, though to try and get me off cipro, as I can't seem to get off that drug. Anyways, Humria,  seems to be working so far no side effects. I am very good about getting my blood work done, to keep am eye on my numbers.  

Canalfre, wow that's interesting but certainly frustrating. 

I have a local friend who had his surgery about 1.5 years ago, and had pouchitis from the start. Was scoped to confirm. Started regimen of antibiotics but couldn't get off them finally after about 6 months of that, doc put him on Humira but even going to weekly still struggles when he goes off antibiotics. I think lately he is off the abx again though. I don't think they've added an immunomodulator. Will have to check with him. 

Milanne -

I am doing okay on Humira. I will have some trouble here and there but I still take Humira and when I start with issues back on budesonide, proctofoam along with Humira injections.  I am doing Humira injections only at present time.  Thought I was failing a few months ago with rash on hands and leakage after my jpouchoscopy which came back inflammation.  I incorporated the VSL #3 probiotics and have tweaked my diet once again and doing much better.  I know I need to stay on Humira for as long as possible.  I hope this information helps you out some.  I believe I am always going to have to stay on Humira and just watch my diet close.  

Roberta

Husband on Humira 1 year.  Last 6 months difficulty swallowing 4 times,  (solids or liquids) with leg pain and fatigue. Had esphogeal Candida from Humira times 4, takes 14 day course of Fluconazole. No notable change in rectal pain, bowel movement frequency, rectal pressure. Can not get off Cipro.  Pouch on scope always pristine- cuffitis is the problem. Scope scheduled in 2 weeks. Doc wanted hubby to stay on at least 1 year. Really want to try Entyvio, any comments appreciated. 

MJL, has pouch advancement surgery been considered? It’s a rough road, but so is the one he’s on.

I don't know what pouch advancement is. Will Google. Did you have this done? Did it help?  I feel like having this surgery was the biggest mistake ever made

I’ve been fortunate to have avoided cuffitis.  When medical treatment of cuffitis fails then sometimes surgery is a reasonable choice. Pouch advancement surgery removes the remaining rectal cuff, which is the troublesome centimeter or so of UC-prone tissue still present with most J-pouches. The pouch is then advanced to the anal canal and they are hand-sewn together. Generally a mucosectomy (scraping off of the mucosa) is also done, to further reduce the risk of UC symptoms. This is a very delicate procedure, which should only be entrusted to the most experienced hands. Other folks here should be able to tell you how it’s worked for them.

Thanks Scott!  Will research surgery and docs who do this.