leaking update

Maybe it was just a virus.

I thought I was doing OK with rotating antibiotics this past year or so. My pouch didn't look so great a year+ ago, but I had high hopes of switching biologics would turn things around. Unfortunately, not the case. My pouchitis was worse than ever a week ago, even though my sumptoms were abated with antibiotics, Canasa suppositories, and Cimzia injections. Soon I find out if the next step is Remicade or Entyvio. 

Now my goal is to avoid dysplasia, otherwise, out the pouch comes.

Jan

jan can they just give you a new pouch if present alternatives do not improve pouch.and have the antibiotics kept you ok otherwise? how many years have you had pouch and is this the first time you have had it look bad?

jan what about  k pouch or that other alternative brat(?) if in event of removal of pouch?

and if you wanted could you not hold on to pouch if antibiotics continue to keep you doable until there was addition problem like dysplasia?

question for you is it true if you have had remicade use  you can never use it again? i had remicade myself when i had u.c.. did not work for me then....does that count as for pouch?

Well, yeah, a pouch redo can be an option, but that still requires removing the old pouch. I prefer not to go there if I don't have to.

Yes, antibiotics do keep my symptoms at bay and I do well on them. However, if they do not lead to mucosal healing, it is a false sense of security. Chronic inflammation is what leads to dysplasia and cancer. Tick-tick-tick. I am 60 now and developed severe pancolitis at age 15. So, sure, I could just keep on as is until dysplasia shows up, but if there is something that will promote mucosal healing, I am all for it.

Remicade: They used to say you could not resume treatment once you stopped it, due to antibody formation. This means less chance of efficacy and more risk of an allergic reaction. However, there have been patients who were able to resume it after discontinuing it. So, while it is sort of a rule of thumb, it is not written in stone. It does not matter whether you retained your colon or not (at least I don't think so). But, if the reason it did not work for you was because you quickly built up antibodies to it, it probably still would not work. http://ibdnewstoday.com/2014/1...-according-to-study/

I have never had Remicade treatments, so it definitely is an option for me. Generally I tolerate meds well. Still waiting for the call from my GI to see which direction we go.

Jan

Jan I was on Internet looking all this up and if I understood correctly . Chronic pouchitis and inflammation puts one at higher rise for dysphasia   But read also dysphasia of pouch rare?? Do they have studies on incidents of it and does it increase risk as years go by which is what you are concerned about

jan in years I have been on site I have not read anyone experiencing but then again one gets on overload and depending on where you are out is what filters through.

 I understand your not wanting to go through pouch a new it was one of worst experiences of my life. Can you do jpouch or anything else besides bag option which I am thinking you mean??

i know a pouch could get less inflammation I read with treatment is renovate your only choice? Also spoke to friend  Christine she goes on site as close su or something like that she had that oxidation chamber treatment Shen recommended it did not get rid of pouchitis but Shen told her her pouch looked 20 percent better!!!

can you look into that. ? If necessary see she sounds like maybe that's a consideration.

Yes, pouch dysplasia and cancer are rare. But, I had 24 years of UC before my j-pouch and an initial diagnosis of pancolitis, so that is two strikes against me. I also have a rectal cuff. Strike three. Strike four is extraintestinal side effects- arthritis. There have been some here who developed pouch/cuff dysplasia.

Maybe a redo is an option, as is a k-pouch. But unless I get dysplasia, I am not even thinking about that.

To me, the hyperbaric oxygen is a lot of effort and expense for an uncertain outcome. I can pretty much guarantee my HMO would not cover it, as it is experimental. I am not grasping at straws at this point. I need better than 20%.

So, I spoke with my GI. The plan is to give Remicade a whirl. Once I'm off Cimzia for 4 weeks, I'm going to get my shingles vaccine. Then wait a couple of weeks and start azathioprine. This is to help prevent antibody formation against the Remicade. Then once I'm on the full dose of the azathiopine, I'll start Remicade. In the few months treatment gap, I'll be rotating antibiotics with my fingers crossed. Funny thing though, my GI said the path report did not find active, acute inflammation, but only chronic ulceration. This was in the efferent limb (blind end of the j).

Jan

jan, did you ever try Entocort for your pouchitis? Shen had me on that in the past and it helped a lot

No, but I've been on short courses of prednisone here and there. I suppose it is on the table, but not at the moment.

Jan

hmm.. jan you say  ulceration but not lots of inflammation does that change anything in concern for dysplasia i wonder???? sounds like your dr plan is good  to me.and you seem lucky to have a doctor so knowledgeable ..i always felt  calmer and better when i felt there was another alternative to try and seems like you have it for now..good plan to me..(i think like i would be) you were thrown by last scope and jumped to a place you were not at yet..When i have my head screwed on right i know i should not jump the gun and take it one day at a time and feel better when i have choices..i do not think you are from what you told us at a good bye pouch time anytime soon. i am so happy to say...and i do think while you are working this through its a blessing the rotating antibiotics are working well enough for you..because to me having serious pain is what makes it unbearable ..

bottom line no point worrying about the what if(something i have to catch myself doing lol!!) you got a plan things  can turn around and if not you are still not at break point and have time for other choices..

by the way you say you have rectal cuff don`t we all have some of that???..i do and it was done 10 years ago...

Oh there IS inflammation, just not much in the way of acute inflammation. The deep ulcers were indicative of chronic inflammation. That may be why Entocort was not discussed. He did say I could use hydrocortisone suppositories or even VSL#3, but he didn't have much hope for them.

Yes, I do like my GI. He's not a j-pouch specialist (he's a liver specialist), but he is very responsive to emails and does lots of research to stay on top of treatment trends. He also works closely with my rheumatologist.

Jan