Remove JPouch

Hi there, I have a question as I'm in a somewhat similar situation to you. I have had numerous stricture dilatations, with the most recent one (11 months ago) involving bowel perforation, repair and creation of a loop ileostomy. I am struggling a lot with the ileostomy and also not optimistic about reconnecting the pouch (due to strictures, pouchitis, fistula and incontinence issues). Progress is currently very slow on the NHS in England, so I'm concerned about long term effects of a disconnected pouch. And considering pros and cons of going straight to a permanent ileostomy.

Can I ask, how did you become aware your J-pouch was infected and is this the reason you've stayed with the ileostomy for 5 yrs?

Hello.

Sorry to hear about your situation. It is very complicated. I went to a specialist to try to address the chronic pouchitis I had since the JPouch was created. During a balloon dilation the perforation occurred. The emergency surgeon said the JPouch could be reconnected but other surgeons said that it would be difficult to do. My ileostomy is permanent. I also have lots of issues with it too, prolapse, retraction, allergy to all pouch systems. However, for the first time in many years I have been able to eat fruits and vegetables, so I resolved to keeping it.

With Crohn’s and strictures above the pouch, it is likely that reconnecting the JPouch could continue to cause pouchitis. I felt so sick from it before, I don’t want to go back to that.

Regarding the unused pouch, I was told that if it doesn’t cause problems they just leave it there. What issues are you having with your ostomy and JPouch? My symptoms were increased increased fatigue, feeling mild illness, mucus, urgency, pain in pouch and diffuse abdominal pain. Initial treatment antibiotics and then biologics.

Take care. Z

Zeninu4, you may experience an inversion colitis. It can occur if the last part of the bowel is disconnected and not supplied with short chain fatty acids.

If you don't get better it is probably the best to remove the unused j-pouch.

Thanks SteveG. Have you heard that it is a complicated surgery and could result in nerve damage if the unused pouch has attached itself to some other organ and needs to be surgically removed from it? What does the short chain fatty acids do to the unused pouch? Have you experienced this? Do you know of any specialists in this surgery?

Hi, I’ve had the j-pouch for over two years with so many complications, mostly pain. My last option is going back to ileostomy my surgeon told me it’s a very dangerous one, that I would not be able to make it due to my many health problems, and back to the ileostomy would be a problem too, so I’m left to, … what do I do?

Hi Benita. I am so sorry to hear about your pain. I know that too well. I didn’t plan to take down the JPouch but the doctor’s perforation left me no other choice. I hope you can find a doctor/surgeon to discuss options. Sometimes, we as patients need to keep pushing for answers and consulting with people. Have you read the Empowered patient? It was helpful to me years ago.

Sending positive thoughts you will find something to ease your pain.

I didn't need to think about such a surgery, I was only offered a temp. ileostomy because none of the meds worked. Until I found chronic antibiotics to be a solution for me.

Short-chain fatty acids are inside the stool moving through the bowel. They nourish the mucosa. They are also built by some bacteria. It is those fatty acids missing when the last part of the bowel or pouch is disconnected what can cause colitis-like inflammation problems.

Thanks for the explanation SteveG. I will check that out. I used to be able to get suppositories but now I was told insurance won’t cover it. I wondered if that would be less systemic. I worry that chronic use of antibiotics will cause resistant bacteria and mess up the microbiome,

Thanks Z, it's interesting to hear your story. I empathise with your tough choices. A swelling and prolapsed stoma is what's currently testing me. I wish you the best on your quest for a surgeon.

@Zeninu4 posted:

Thanks for the explanation SteveG. I will check that out. I used to be able to get suppositories but now I was told insurance won’t cover it. I wondered if that would be less systemic. I worry that chronic use of antibiotics will cause resistant bacteria and mess up the microbiome,

I’d suggest appealing the insurance company denial of suppositories, since that’s the best way to deliver medication to a disconnected J-pouch.

There is no “normal” or “natural” microbiome in a J-pouch, since it’s not a natural space. If antibiotics make you feel better then protecting your J-pouch microbiome is the least of your concerns. To consider it another way, if your symptoms diminish or disappear on antibiotics then that’s creating a better microbiome for you than the one you develop without antibiotics.

Antibiotics can have real and consequential side effects, of course - there’s no need to create fictional ones.

Good luck!

By the way you can also do enemas with sodium butyrate, that is such a short chain fatty acid. If your pouch is disconnected not far from the entrance then the enema should reach everywhere.

I read about a UC patient that added probiotics to such an enema, but I myself had only the content of 3 capsules of sodium butyrate  600 mg (BodyBio) mixed with water on few occasions when I tried to treat pouchitis some years ago. Most times I ingested them which is easier (but does not make sense in your case).

I'm sorry to hear of all of your problems, all of you.  I unexpectedly had my 24+ YO pouch disconnected and an end ileostomy made 10/17 due to a very large septic abscess.  (I had planned to have the pouch removed anyhow, due to fistulas, pouchitis, cuffitis, strictures, etc.)

One year later, 10/18, I had the jpouch removed, and my stoma revised (due to kinking).  This was all done at the Cleveland Clinic by Dr. Tracy Hull and company.  https://my.clevelandclinic.org/staff/704-tracy-hull.

I had the surgery done at age 61.  The surgery itself took around 3 hrs, maybe a bit less.  An ovary had to be removed due to severe adhesions.  I had a Barbie Butt made, but I didn't have a huge perianal wound - somehow, she closed it from the inside, so I didn't have to deal with that "end" of it too harshly.  She left a small opening in the perianal area for drainage, which occurred for awhile, but wasn't too serious.  I did have a bout of afib after surgery which landed me in ICU for a day, but no problems in that area since the surgery.  After discharge, I had to return to the hospital due to ileus and then gastritis, but that all resolved after about 8 days.  I created a thread re. my jpouch removal here under https://www.j-pouch.org/topic/...al-date-and-time-set for more details on the experience, if interested.

With the pouch gone, everything settled down, and no more fistulas is in particular a happy ending.  I'm on no meds other than imodium as needed.

Dr. Hull was the most competent, caring, attentive, honest doctor I had through my 40 some yrs of IBD and surgeries, and I very highly recommend her.

Any questions, feel free to ask.

Hello n/a.

Thank for you for sharing. your experience.  I am looking to consult with a surgeon who has experience removing the J Pouch since reconnection is not an option, I will check out your thread and look at Dr. Hull. I am glad to hear that she was competent and caring. Not easy to find. This is a great referral. Thanks so much!

Thanks Scott F and ScottG.

I was thinking of long-term A/B use on the rest of my GI tract, not the pouch. Good idea to revisit the insurance company. Appreciate the suggestions.

@Zeninu4 posted:

Thanks Scott F and ScottG.

I was thinking of long-term A/B use on the rest of my GI tract, not the pouch. Good idea to revisit the insurance company. Appreciate the suggestions.

The rest of your GI tract doesn’t really have a microbiome at all. It’s not perfectly sterile, but neither is it the bacterial playground that a healthy colon is. Okay, the first part of the GI tract, the mouth, seems to have an interesting and important microbiome.

I’ve been on antibiotics continuously for about 14 years. Since one of them is Cipro my tendons and aorta occupy vastly more of my attention than my questionable GI microbiome or the real-but-much-less-important antibiotic resistance question.

Thanks Scott. Good information to know.