Jpouch Stricture/seized/closed

Maddening to be sure. That said, I would think that the Crohn's diagnosis from the Cleveland Clinic should not be dismissed simply because your IBD serologies came back negative. Those tests are not fool proof, and always need to be correlated with clinical findings. The folks at Cleveland Clinic have seen a vast amount of troublesome pouches. Strictures are one of the signs of Crohn's. In addition, it is not unheard of or even uncommon for Crohn's symptoms to develop years or decades post colectomy. Whether it is chronic pouchitis or Crohn's, it does not matter, the treatment would be the same.

Also, while it *may* take 14-24 weeks for maximum benefit for Remicade or Humira (12 weeks is more typical for seeing improvement), often a benefit is seen within the first few weeks. It just varies. For my pouchitis, it was about a month with Remicade, and I am doing well on it. I had been on other biologics before Remicade.

It made sense in your case to get the ostomy so you could restore your nutritional status. Perhaps starting Remicade or Humira now would also make sense, while you have the ostomy. It may make it possible for you to return to using your j-pouch later.

Jan

Hi Jan

Thanks for the well thought out reply. I totally understand your point and is was explained to me during the process that just because the blood work/markers were negative, it still could be crohns. Your right, I was quick to dismiss their diagnostic based on lack of any additional blood work or diagnostics being done while I was there. It was simply, you have crohns mentioned 10 different times and to go back to your GI after the stricture was discovered.  

The GI put me on 60mg of prednisone per day. I was miserable and it didn't seem to work other than to allow me to pass liquid stool for several weeks. He felt since the high dosage of prednisone had little effect the biologic wouldn't work 

But I wasn't a fan of this particular GI specialist and will withhold his name and his plan 

I like your idea about getting on the Remicade or Humira now and will discuss this with my colon rectal surgeon later this week as my appointment is scheduled for Friday 

Really appreciate the reply 

Anyone else with similar experience? Or surgery to repair pouch? 

Thanks again Jan 

My stricture would not go away even with surgical intervention. I had to give myself enemas in order to empty my j-pouch.  I went to a permanent ileostomy diverting from my j-pouch for 6 months before having my then still sick j-pouch removed. 

It looks like you are doing well with the ileo. If I were you I'd wait a while longer and see if your j-pouch gets better. I also had chronic cuffitis and pouchitis.

I'm sorry to hear of your misfortune, was hoping to hear of a positive surgery procedure or a better alternative. I like Jan's suggestions above and will go with them at this time 

In meantime I wish you all the best 

I was suggested you try to allow your j-pouch more time to heal. That may happen with the biologics and/or other kinds of medications. Sorry I wasn't clear about that. 

I would like to add an update as of 8/25 

Having the temp iliostomy has improved my health tremendously. My weight is now up to 127lbs (from 97lbs on 7/3) I feel so much better and although I'm not happy wearing a pouch, it's probably been the best decision made in 6 months 

The other bit of good news 

I just had a pouch-oscopy (whatever you call it). Anyway, last time pouch was scoped was 4 months ago and my new GI wanted fresh pics and to see what was going on 4 months later 

4 months ago, the pouch had white ulcerative patches that were biopsy (came back negative) and the pouch was closed. Not a good site and remicade was prescribed. However, I was losing weight at such a rapid pace that the iliostomy had to be done quickly to get my health, nutrients, hydration and weight back to normal levels. Im getting there 

Yesterday, the report stated all ulcerative white patches were gone, pouch was open, and looked tremendously better, which is good news. My GI even mentioned I could get my reversal surgery done, but cautioned it wasn't a good idea at this time. I agreed as nobody knows why it closed in first place. If I get reversal surgery done, who's to say it doesn't close up again right away? 

I had my temp ileostomy done on 6/22 so no stool, or anything was passing thru pouch for last 2 months. It's as if it has almost healed on its own. I'm not sure what that means. If I had Crohns, UC, or IBS wouldn't the pouch theoretically looked the same? 

I'm obviously happy with the news on the pouch and don't want to get ahead of myself as there are many more challenges ahead 

However, that being said, I'm taking Jan's advice, along with my new GI & Colon Rectal Surgeon and going to start remicade treatments asap. After approximately 12 weeks of remicade, then we will schedule another pouch-oscopy and see what it looks like. I'm hoping these specialist & surgeons are correct and that by taking the remicade, it will allow me to have my reversal surgery by December 

This seems like a rational game plan. Any thoughts are welcome 

My 1 question. Can you have surgery while taking remicade? If not, what's the down time on stopping the infusions in order to have surgery? It's my understanding that remicade blocks the body's immune system and I don't think that's a good idea while trying to recoup from the reversal procedure 

 Any positive comments are appreciated 

Steve 

Unfortunately drugs like Remicade do increase the rate of surgical infections. Some surgeons use a rule of thumb that you should be off the medication for 30 days prior to surgery, if possible. Here's a link to a very readable article (more of a discussion):

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127026/

Yes, you can have surgery, and you actually do not want to stop Remicade, as it is more likely you will develop antibodies against it if you have a lapse in treatment. Not so much the case with the other biologics. I had an adrenalectomy and cardiac ablation while taking Simponi. I am still here.

Jan

First, let me reply to Scott

Thanks so much for that article. Very interesting read and obviously something to strongly consider. It makes sense to me. That was my first thought that having any type of bowel surgery while taking a TNF medication could be dangerous. 

In response to Jan thanks for your feedback as well. I'm glad your still here and always appreciate your feedback, after all, I am going with your suggestion on the Remicade now while still wearing the pouch 

Obviously, I will be discussing this topic with my surgeon, my other surgeon at the Cleveland Clinic in Miami and with my new GI. I will end up going with the consensus and keep this forum updated. 

Obviously I'm happy the jpouch has improved dramatically on its own. Im hoping this Remicade turns out to be the solution, although quite frankly, I'm very nervous about taking it based on the 5,000 things listed that can go wrong using this dangerous drug 

I'm scheduled for another look at the pouch in 12 weeks, this will be while I'm on the Remicade. Hopefully there is good news to report at that time 

Thanks all for your feedback and again anyone with positive feedback is always welcome 

Steve 

Another item to note is that in the article, 30 days off biologics is what it considered reasonable. Since dosing with Remicade is 6-8 weeks apart after the initial induction. Performing surgery between doses will give you that 30 day window. When I was on Simponi, the dosing was monthly, so I just delayed my next dose after surgery for a couple of weeks.

But, cross that bridge when you come to it. Get well first, then worry about take down later.

Jan

Jan has offered several important insights here. Sometimes we're obliged to weigh alternatives which are each riskier than we'd like. It's critical in these cases to try to maintain a rational approach to all of the factors, and not get distracted by the smaller stuff. For example, Jan's point about getting well first is clearly the Most Important Thing. After that you consider your options.