Hi Everyone,

  First time posting on this forum but need your advice, not sure if anyone else had this particular scenario, so here it goes.  I've had Indeterminate Colitis (Crohns Colitis vs. Pancolitis for 18 years, ANCA positive but anti-saccharomyces negative).  I have recently been diagnosed with dysplasia and have to have my colon removed. 

I would elect to do the J pouch but as of last year, I developed a small peri-anal fistula that has reoccurred 3 times within 18 months (each time went away with oral antibiotics).  I've actually been in remission for 4 years and my quality of life is great right now, so either way....life is going to change after the surgery.

My surgeon thinks we should try the jpouch but some of the GI doctors say its risky.  Has anyone gone through a similar situation and how has life been for you? 

Thank You All! 

Original Post

My surgery was done for indeterminate IBD (it stayed indeterminate even after pathology was done on the whole excised colon). I carefully reviewed the risks and decided to try it. I feel like I’ve had a great result, even though I have to stay on antibiotics to manage chronic pouchitis. However: I had no peri-anal disease and no fistula history. These really do increase the risk of an unhappy outcome.

My attitude was that I wanted to try it, and I knew that it might fail. In my decision-making I substantially underestimated the misery that goes along with pouch failure, but fortunately I haven’t experienced it.

I was also diagnosed with indeterminate colitis...and also stayed indeterminate after surgery and several additional tests (inc. one very expensive one we had to send out of state of which I can't remember the name.) I was fine with IBD meds and a bi-annual flair that required steroids until I wasn't fine and then it was toxic megacolon almost overnight. So I didn't have a choice of anything initially. They removed my colon and gave me a temporary end ileostomy and left the rectum in place and then said wait to heal and get healthier before follow-up surgery.

While waiting and healing I ended up developing what my doctor determined were extra-intestinal manifestations of the disease, including pyoderma gangrenosum around the stoma site which made it all but impossible to adhere an ostomy bag. So the decision was kind of made for me -- I had to have the j pouch surgery.

I had a whole slew of problems during the 5 years I had the j-pouch (incontinent ileostomy) and now have a k-pouch (continent ileostomy.) One of my first surgeon's prescient responses I recall from after the surgery was that the worse a patient's disease is before the surgery tends to correlate to worse experiences after surgery. The medical community is still learning so much about the disease and he simply acknowledged that early difficulties can in general be an indicator of difficulties that will often manifest later in his experience. My personal experience also confirms this statement -- the people I've personally met who are living well with j-pouches and little if any problems all had UC and all had the j-pouch surgery by choice, before the disease progressed to toxicity. 

Given both your indeterminate diagnosis and your conflicting doctor opinions, I would suggest you consider getting a second surgical opinion and/or ask your surgeon about just having the colon removal surgery and temporary end ileostomy at first. Then you could evaluate what life is really like with the ostomy bag, as it is understandable that some people have issues beyond health reasons for not wanting one. If you don't have an issue with it and you continue to have other problems (fistulas or inflammation) in that area, you could forgo a lot of pain and problems by just having it made permanent. Or, if you do NOT want to stay with the ostomy bag and do want to try the j-pouch, then you can have that created and healed before "take-down." I will note that many doctors actually prefer the multi-step procedure, but it is understandable that most people want to avoid an extra surgery and eliminate a step.

There is also the k-pouch to consider -- which is what I was revised to after a j-pouch. With this style of "system" you still have the internal bag like a j-pouch instead of the ostomy bag, but could also have your rectum removed for one less potential problem site. It entails defecating by means of intubating a continent stoma on your belly instead of rectally so it is a big change. Again, this would likely necessitate another surgical opinion, but that would provide you with some valuable insight if you were able find someone. Pertinent to your current issues, you will likely get some good information here at j-pouch.org searching for posts from j-pouchers with perianal fistulas -- I know there are a lot of them.

You will also find an overabundance of posts here about liquid stools and frequency -- everyone is very different. I will say the following in general: Most docs seem to be okay with more bathroom trips than the average patient -- I think the doctor version is 8-12 times per day is okay but patients are generally trying to get down to 4-6. Also, in general, everyone is very loose at the beginning and this improves with time -- the diversity is in how loose for how long. And lastly, diet is also a factor, with some things being more universal and others more variant from one person to another. While these are second to your main decision, you will also find many, many posts here on all these topics.

I wish you the best of luck and lots of blessings on your journey to an answer, Jennifer

Nick, I use the toilet about 4-6 times per day, but with no urgency at all and almost never at night. I started on Cipro around 2009, 7 years after my surgery. In retrospect I probably developed pouchitis at least a year earlier, but it came on so slowly I didn’t realize for a while that I needed medical care. I had to add a second antibiotic (Flagyl) about 5 years ago to maintain efficacy.

Thank you both for your replies and information.  It's such a tough decision!  If I didn't have the Fistula, then I'd probably go ahead with the J pouch.  I don't have any involvement of my ileum.  

There's also the risk of Malignancy and since I have high grade dysplasia, I am wondering if its even worth the risk?  I have 7 days to decide since my surgeon said he'd do what I wished.  

If you have dysplasia, especially high grade, your colon cancer risk increases dramatically. The colon is going to have to come out. Whether you want to risk a J Pouch is a decision you will have to make. I carry a Crohn’s diagnosis but never had any fistulas nor inflammation in the lieum prior to colectomy. I have had a J Pouch for 27 years after my surgery which was primarily due to massive inflammation and dysplasia in the colon. My quality of life has been much better with a J Pouch but not issue-free for sure- chronic Pouchitis and inflammation in the ileum, no fistulas, symptoms managed with antibiotics and Remicade. By the time my colon came out it was dissolving in my surgeon’s hands from the inflammation, so he said, and toxic megacolon would have happened probably in short order if I didn’t have surgery. That’s an even bigger concern than cancer in the immediate future, depending on how weakened the colon is structurally from the inflammation. Colons do not last forever if the UC inflammation progresses.

Suggestions of you doing a temporary ileo, letting your body heal and then making a decision on J Pouch/K Pouch/permanent ileo may make some sense. 

Good luck.

Thanks everyone for their valuable insight.  I just don't know if its worth risking having worsening peri-anal disease with the J pouch and then being on chronic medications (either Anti-TNF agents or Antibiotics).  I think I am leaning towards the end ileostomy....but if I never had an peri-anal disease, I would give the J pouch a try!

Hi all, 

i’m reading very useful information in this discussion.  Thank you to each of you to share your experiences.  

This question is for Scott.  I have been dealing with Pouchitis practically since I have my JPouch (five years).  Now I was released from the hospital for a blockage and mild inflammation on my small bowel (undetermined Crohns) 2 weeks ago.  I’m right now dealing with terrible diarrhea, but not sure if could be Pouchitis again or more of the small bowel inflammation.  Cypro always seem to work for me, but my doctor put me on Prednisone (not helping at all).  Do you take Cypro and Flagyl on daily basis? What’s the longest period you have been on it? My doctor never extend my Cypro dosage more than 2 weeks, but once I’m off, my diarrhea comes back 😞 I’m so sick of being sick. 

I appreciate any comments or opinions.

Laura 

Laura, I take Cipro and Flagyl every day, and have done so for years. This is pretty standard treatment for chronic pouchitis, though it’s better if you can find several effective antibiotics to rotate between. I carefully tested to find the lowest dose that worked for me, to reduce the very real risk of side effects. I find that it works just fine with one dose per day, which makes it easier to follow the administration restrictions (e.g. no dairy within a few hours of Cipro).

Some doctors have never used antibiotics in this way, and haven’t educated themselves about the treatment of chronic pouchitis. Occasionally they are willing to be educated, so you could print out the articles in the very top thread of the “Pouchitis” forum here and give them to your doctor. Or you could try to find a more knowledgeable doctor. Most people with chronic pouchitis can live normal lives if it’s treated effectively.

All that being said, it’s common for people to have lingering symptoms after a blockage, and I don’t know exactly what your doctor is thinking about with the prednisone. I also don’t know how certain your Crohn’s diagnosis is. Cipro and Flagyl don’t treat Crohn’s disease. If your blockage was caused by Crohn’s (rather than adhesions) it might be very wise to try to calm down your small bowel, to prevent another blockage. This could have very little to do with your diarrhea.

I hope you feel better soon!

Thank you Scott for your response.  It is great you found the right meds to work good for you!  I’ll read those articles you mentioned and make copies for my next doctors appointments. 

I have been tested for Crohns in the past (Prometheus test included) and recently when I had the blockage , and the results are always the same, Undetermined.  It is very frustrating because I’m not being treated for Crohns, either Pouchitis. The last two times I was hospitalized (twice last two months) I have been treated for a blockage, but once doctors put on me Cypro and Flagyl, my symptoms got better.  I see great doctors in Cleveland Clinic Fl.,  I just feel they’re treating my symptoms but no my real problem.  My local GI told me he was considering to put me on one of the biological meds to treat me “as I have Crohns”, which is ok for me because all I want it is to feel better.  I haven’t feel healthy in about year ago and it is so discouraging 😞

Most blockages clear up on their own, so it can be misleading to attribute the recovery to the treatment (e.g. Cipro/Flagyl).

The GI biologics can be reasonable choices for both chronic pouchitis and Crohn’s, and might indeed make you feel better. If the blockages are from adhesions, though, no medication in the world will help.

Hi Scott,

I would like to believe my blockages are caused by diet, and no by adhesions.  I was tested for everything on my last hospitalization.  Leaks, strictures, Crohns, Pelvic muscle issues, etc.  Last two days have been the best health wide I had in a long time (over a year) and hope it means I’m on my way to finally recovery.

Thank you very much for your advise! It is so good to count with such a great supportive group.  It makes a big difference in my life! 👍🏼😃

Laura

I’m glad you’ve been feeling better, Laura!

Blockages are generally caused by something that narrows the small intestine. Food can get trapped behind the narrowing, and that can lead to all kinds of trouble, but food alone doesn’t cause the blockage. They can’t test for adhesions, which are a very common cause of blockages.

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