Life After J-Pouch Removal

Although I had to have my J pouch removed, I strongly did not want to go the ileostomy route.  I did my research and opted to get a BCIR (similar to a K pouch) which does not require having an external bag.  There is nothing wrong with deciding to get an ileostomy and many people have had satisfactory results with one.  It is a personal decision best made after researching the available options.

Any surgery to remove a j pouch and sew up your bottom is complex and best performed by a surgeon who had done many of them.  For me, the surgery went very well, but took longer due to the presence of adhesions from prior surgeries.  I recovered quickly after my surgery and can do any of the things I enjoy and eat almost anything I want. I empty my pouch 4-5 times a day at my convenience with a small silicone catheter and cover the stoma with a small absorbent dressing.  I have had no leakage, skin irritation or the need to deal with the supplies needed for a conventional ileostomy.  The catheters and dressings cost me under $200 per year.  My GP found that I was low in iron, feritin and vitamin B-12, but oral supplements corrected that. I am not trying to “sell” you in the BCIR or K pouch, but these are two options you may want to learn more about.  Please feel free to send me a PM if you have any questions.

Bill

Thanks Bill. 

Great response and a good option. 

A question for you Bill. Do they sew up the rear when you get a bcir? 

Penniepouch.

I had my pouch removed and an ileo installed two years ago in October. I have no complaints.  It's an option. But it's final.  Which I came to terms with. I'm good with it. 

I asked about the k pouch or bcir and my surgeon said no. Period. I was very sick and to keep trying stuff probably would have ended my life.  But if I were younger I certainly would have fought for another option. Being in my sixties I'm fine with my ileo. It works just fine. I am not limited anywhere. I work eight hours a day.  I move bend twist lift push pull. I forget it's there. 

As for loose stools. Well. That's all there is. It's liquid.  Wouldn't work with well formed stools. I have seen it come out kinda solid like. 

  Absorption. Of course it's a short transit but my surgeon says I get what I need. I don't feel any difference. I take iron pills. That's it. 

As for appliance problems. None. Except when I make a mistake.  And I have done rookie mistakes. Lol.  I have not been burned there or had but two leaks since I had it. And I didn't know it was leaking until my change day. And it didn't even burn me or mess my skin up. 

Hernias. 

Yes. You have a man made one and you have to be aware of it when lifting pulling pushing and things. But I do alot of that and have had no problems. 

Other options should be explored. Because the end ileo is final. No going back. 

Richard. 

Richard, I really admire you for explaining the thought process you went through in making your surgical choice and explaining how it worked out well for you.  Many people faced with removal of their J pouches are not given the opportunity to research their options before proceeding with surgery.  Unfortunately, too many doctors are not well informed about the alternatives to an ileostomy or they express negative feelings about them to their patients.  Also, these options are performed by a limited number of surgeons since the J pouch has become the favored option.  No one wants to be in the position of feeling, “if I had only known about available options” when the procedure they selected does not produce a satisfactory outcome.

In most cases, the bottom is sewn shut when converting from a J pouch to a BCIR.  This adds little additional work for the surgeon when already removing what it is connected to (the J pouch itself).  The anus is no longer needed with a BCIR or K pouch and might become the site for additional complications if it is not removed.  For those opting for an ileostomy, it is possible to get a BCIR or K pouch later if the ileostomy fails to produce acceptable results.  There usually is sufficient small intestine present to make the internal pouch.

Bill

Thank you. 

You give very good explanations of the bcir.  And it's very helpful to all considering it. 

Better explanations than I give on ileos.    Lol. 

I had a very experienced surgeon. And she was only 47.  She did the most j pouches in the whole of the DFW area. She also had very good and experienced backup.  I have no complaints on my surgeon.  Just praise.  What I went through was none of her fault.  Just the way it went. 

Some of what I went through is just a fog. I'm amazed at people that can recall things in detal. I've never been good at it. I wish I were.  

Richard. 

I had my j-pouch and rectal stump was removed 14 months ago. I'd rather not have an ileo but feel so much better I wish I'd had it removed 18 months before.  This permanent ostomy is light years better than my temp one was between my j-pouch surgeries.  

I am off the many expensive medications and can leave the house without worrying. I use our hot tub and have been in my in the ocean. Like eveeything it takes awhile to get use to it but once I found the best appliance to wear the quality of life life has been much better.

I am older at 61 so didn't want to go the BCIR or K pouch route.  Bill explains it well. 

I do not regret going this route.  If you want to read more I suggest you look under the Ostomy forum here. 

I hope you are all doing well. I see these messages are old, but they are applicable to me. I was diagnosed with Crohn's at age 52.  I am 65 now. I was on Pentasa for years and Prednisone frequently. My diagnosis was questionable at this point whether it may be UC or indeterminate. Nonetheless, I opted for a J-pouch; surgery in 2017 and takedown 2018. I had a good year and a half; then pouchitis treated successfully off and on and then not more on variety of chronic antibiotic use. My symptoms are many and my scope 2 weeks ago show, once again, elongated and dilated blind loop with SIBO and other inflammation. Looks like a permanent ileostomy is in order. I hated the leaky loop ileostomy, but I understand the permanent one is much better. Thank you all for your info ON BCIR and K pouch. I am familiar with these and like the idea.  With regards to insure of the anus, can I still sit on my bike seat; do squats and other athletic things? I swim (when I am well) laps. Is there something waterproof to go over the gauze?

I am scared of another operation. I have secondary Addison's from years on steroids so am on lifeline low dose steroid to keep me alive.  I now heal very poorly. 

Any help would be appreciated.

Gail

Hi Gail,

If you are still considering a Continent Pouch, I right now have a lot of supplies anyone can have , free, as I had my Kpouch removed 7 months ago and now have an end ilieo . Mine took a lot of supplies, as it constantly had mucus leakage.
I’m very happy with the ilieo , even allows me more choices in my diet.

I have lots of Ampatch’s and Lubricants and catheters. Will soon just get rid of as no one seems interested in them.
I’m in Southern Florida now.

Good luck in your decision.

Happy Holidays to everyone🎄

Jan

Thanks for the info Jan and the offer of supplies. I live in Canada (Ontario).  I spoke with a woman here the other day as she has a KPouch. She has had numerous problems and 4 operation interventions.  If my J-pouch keeps deteriorating, I believe I will choose an end ileostomy as well.  Take care.