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Hello everyone. 

I am happy to be able to join this website.

About 4,5 years ago i was diagnosed with uc. I took a lot of medication before my colon was removed. My rectum got taken out when my j-pouch was made. Before my j-pouch was connected i got a loop ileostomy. The output from that ostomy wasn't even a little like when i had the end ileostomy. The output was very high and watery. Before i had my takedown my j-pouch was allready inflamed. My surgeon said to me that when it would be connected i would take some antibiotics and it would go well. Sinds my j-pouch was connected it had been inflamed, I am now taking antibiotics for over a year. A few weeks ago i had een apointment with my surgeon and we decided disconnect my pouch just above it and use that small intestine to make a permanent ileostomy. The pouch would later be taken out because doing it now would be dangerous due to the inflamation. Later my surgeon called me and said he spoke to another surgeon from another hospital that told him it is to dangerous to disconnect the pouch because it could lead to a to low bloodsuply and that could lead to other problems so i would again get a loop ileostomy before my pouch would be taken out. I am now going to the hospital of the other surgeon to do some more tests en a scopie. After that they Will deside what to do with my case. 

besides the inflamation i also have a fistula that is typical for Crohns disease  and the fact that my pouch was inflamed before takedown isn't typical for crohns disease. Sometimes it feels like my pouch colapses if i bend through my knees or put to much presure when emptying my pouch. After that i have a lot of pain and cramps and my stool can hardly pass while evertime i feel the urge to go to the toilet, hardly anything comes out, this can last for a few days.

I really dont want to start again with the medication i used in het past, i want my pouch to be removed and feel the good way i did when i had my first ileostomy. A few thing that makes me have my doubts are, if after my pouch Will be taken out and i get that little extra small intestine working compared too after the first pouch surgery Will the output of my ostomy be less and more solid. And what are the chances of getting nerve damage when taking the pouch out? 

Thanks allready for your reactions.

greats, Lars 

 

 

 

 

 

 

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Hi Lars,

Welcome to the forum.  As a new member, you should read posts from others who have had problems similar to yours and could offer suggestions that might improve your situation.  These posts could also help you make a list of questions to ask your current surgeon and the one you will be seeing shortly.  My thoughts are to make an extended effort to keep your pouch before deciding to have it removed.  Hopefully, your new surgeon has lots of experience in treating j pouch problems and can offer some things to try before having surgery.  If it does come down to needing removal of your j pouch, there are two alternatives that do not require having an external bag: the k pouch and the BCIR.  There is a lot of information on the internet about each of these procedures.  When my j pouch had to be removed, I was fortunate to find a surgeon who gave me a BCIR.  I strongly did not want an ileostomy, but that was my personal decision.  I now enjoy an excellent quality of life with it.  I did not notice any additional loss of nerve function after my j pouch was removed.  Here’s hoping that you will soon have improvement with whatever you decide to do.

Bill

A BCIR (Barnett Continent Intestinal Reservoir) is a modification of the K pouch and it functions exactly the same.  The BCIR has what is called a “living collar” which is a short section of small intestine used to stabilize the valve.  Both of these procedures have a success rate in excess of 90% and have a very high rate of patient satisfaction.  These procedures offer a very good quality of life for those not wanting to experience issues involved with the external bag.

Thank you Bill for your reply. 

Ik have been looking the internet for a very long time, and Reading about other experiences from others. The surgeon that im seeing shortly is a little bit more experienced with removal of the pouch, i dont know about treating problems. I do not want to use the medication again that i used to treat my uc. And you said that the succes rate of the k-pouch and the BCIR is 90%. I have had so much misfortune that i dont want to try something like that. But i will look into those two thing. 

Also i have a lot of pain in my small intestine the last four or five days. Some time ago i had an mri to check if anything was wrong because ik had a lot of pain lower in my stomach when i got the mri it had almost disappeared and there was nothing wrong. but now i feel something different. Now ik feel the pain higher in my stomach It feels like a narrowing or maybe it is an inflamation. I am calling the hospital where i had the surgery, i think something isn't right and has to be looked at. 

Lars 

 

 

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