From temp ileostomy to permanent (need advice)

Hey Fellow Pouchers,

Let me first say God is Good!! Ok so let's get into this. I'm looking for some guidance on a decision I have been considering lately. So hopefully those that have experience can share some knowledge and wisdom with me. Being the recepient of a Bratlike JPouch that never seemed to want to cooperate since day one after many struggles with strictures, blockages, and my biggest problem fistulas that have almost put me in the grave from infections I told my Dr last year to give me that bag that has been the only thing that has kept me healthy and happy. Since a year ago until now my temp ileostomy has been wonderful. I went from a mere 130lbs standing 6'1 to now 205lbs where I should be. Anyway the biggest issue I have experienced that has been a complete nuasance is an extreme amount of fluid that come rushing out of my bum mostly at night. I literally have had nights where I changed my underwear 3 times that were soaking wet like I wet swimming with them on. It happens during the day also especially when I'm active. There is a faint smell but more watery than anything. Sometimes I get a brief moment of pain where I have to rush to the toilet but that doesn't happen often. I know from the procedures I've had in the past that the pouch is still diseased with pouchitis. I set up an appointment to talk to my Dr next week about going to a permanent ileostomy. From the research I've done on this site and others people have raved about how much better the perm is rather than the temp. So with all that said I'd like to hear experiences on the surgery itself, the recovery time, and most importantly any issues that I may need to be aware of as I consider this decision. Thank you in advance my pouch family. God Bless!!

Original Post

From what you have posted, I am assuming that your latest surgery left your j pouch in place and created a temporary ileostomy.  Since it appears that you have made reasonable attempts to get your j pouch to “behave”, removing it at this point is a reasonable decision.  I cannot personally compare a temporary with a permanent ileostomy since I only had a temporary over 35 years ago as part of my j pouch surgery. I was so glad to see it gone.  A malignant polyp and recurrent high grade dysplasia made it necessary to have my j pouch removed 5 years ago.  I very strongly did not want an ileostomy with its associated issues and was fortunate to have knowledge of two alternative procedures that do not require having an external bag.  They are the Koch pouch and the very similar BCIR.  I opted for the BCIR and have had excellent results.

Since many doctors have limited or no knowledge of these options, they routinely only recommend a permanent ileostomy.  I do not mean to discourage getting an ileostomy since many people have had satisfactory results with them.  You may wish to research both of the alternatives on the internet.  My BCIR surgery was performed by Dr. Ernest Rehnke in St. Petersburg, FL.  They have a very informative website at www.bcir.com.  In addition, they are having seminars at Hebron, KY on 6/9/18 and Greensboro, NC on 7/28/18 where you can meet Dr. Rehnke and some people who have BCIR’s.

My surgery took longer than normal due to the presence of dense adhesions, but it was fully successful and I was able to resume many of the activities I enjoy within a month after returning home.  I now can eat almost anything I want, get a full night’s sleep without interruption, have no leakage of gas or stool’ and empty the pouch at my convenience 3-5 times a day with a small plastic catheter.  Please feel free to send me a PM if you have any questions or would like to talk with me about my experience.

Bill

Thanks Bill,

That's some good info! Yes I've heard of BCIR and me and my surgeon have discussed it before if I decided to have the pouch removed. I'm not sure he's an expert in that field I might have to consider another surgeon but it's definitely something to consider. I like the idea of just having a catheter without a bag as it tends to get in the way often and does get quite annoying if there is alot of gas. I've had many issues with leaks which would ruin a day old wafer. Also makes the skin very irritable. I'm just really not okay with the idea of a diseased pouch just sitting there being perserved with no need or use. The biggest thing like I stated was the amount of fluid that has been pouring out my bum. Its a huge inconvenience. Thanks again for taking the time to give me your thoughts and perspective. I have alot to consider. God Bless Brotha!!

It sounds like you'll be getting rid of your j-pouch and have a Barbie/Ken butt. I too first went to an ileostomy and left in my pouch but 6 months later had my j-pouch removed. 

I had permanent ileos both of these times and had a temp ileo in-between my j-pouch surgeries  The difference is like night and day with the permanent ileo functioning much better. It took a good 6-8 months before my rear end was ready for non padded seats. I had 2 cushions from medical supply stores. I left one in the car and another in the house. That recovery was much better than my 1st 6 months with my j-pouch - the butt burn, many trips to the loo etc.

I'm glad you are feeling so much better!  Good luck in what ever you choose to do. If you have any specific questions please ask. There is an "Ostomy" forum in here. You might like to look in there for discussions that a bunch of us have had in recent years.

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