Hello,

while i cannot speak to the issue myself, if you search for the postings of mysticobra, you will find his brave and inspirational postings on his journey back to an ileostomy,

i hope this helps.

My thoughts are to do everything to keep your J pouch and Cleveland Clinic is an excellent place to help you.  I had a J pouch for 30 years and recurrent high grade dysplasia and a malignant polyp in the anal canal that made pouch removal necessary.  I strongly did not want an ileostomy with its associated issues and was able to get a continent ileostomy,  They do the K pouch procedure at the Cleceland Clinic and you can inquire about it while there,  I have had my BCIR (very similar to the K pouch) for 9 years and it has given me a very good quality of life.  Please feel free to message me.   Bill

I totally get it. I was diagnosed with UC in high school in 1995 and actually had it under control until they found dysplastic cells in 2010 and I had to have surgery and the j-pouch which has been inflamed ever since. I even wonder if they can do colon transplantation bc I hate it but I deal bc Im in my 40's and single with two young children and things are challenging enough. Wish I had some answers.

Although I agree with Bill V.

I personally couldn't keep searching for a fix.

I was slowly dying. I see that now looking back when I had my pouch.  Nobody wants an ileo. Nobody. As as I have read in here the suffering some go through and that there is relief as I have had with an ileo. But we avoided it no matter what. It after time just becomes a part of you. In my experience.  (an ileo).

I compare it to when I quit smoking 20 years ago.

I was just tired of it and I quit after more than 30 years of smoking.  And I haven't smoked since.

Now. I kept my pouch for a little over two years and tried everything. I do mean everything. Diet to meds. Whatever. Nothing worked as I deteriorated.  Nothing was wrong with my pouch. It was healthy. I guess I fell into that small percentage of people that it just didn't work for them.

It was actually more miserable than the initial UC I had.

So. I decided for the sake of my wife. Who had watched me suffer and decline over the years and went into surgery to have it removed.  I considered a bcir but what if that didn't work. Like the pouch didn't. Well. I wouldn't be writing this.

In my own personal experience it was the right decision.

Now. Everyone has to make their own decisions. Everyone is different. 

So in saying that I will leave it at that.  I don't want to talk anyone to into getting an ileo and regretting it.

But in my case after over six years with it I have had zero problems. It has been my cure.

I never in my wildest dreams thought I be okay with it. But I am perfectly comfortable with it. I'm fortunate to be where I am and I live my life carefree of any problems with what I eat or how I use the bathroom.

Ultimately it is a personal decision. Only you can make it.

But getting advice here is a start. An informed decision is the best way to go.

P. S.

My surgeon left everything intact. If I want a pouch or bcir in the future I can. That is important information.  She did not remove my rear. Sphincter. I don't have what they call a barbie butt.

Richard.

@Mysticobra

Is there a time frame in which you need to decide on J pouch redo vs staying with an end ileo?  Are there any risks to leaving the decommissioned pouch in place? I would imagine the anal sphincter may weaken over time without use but that probably takes a while. I’m at my wits’ end with this pouch and feel it’s only a matter of time before I return to the bag. I too felt way healthier with an ostomy.

My pouch has been removed.

My anal canal and muscles still feel strong there.

It has to be cleaned. Which is no big deal. It has mucus. But it pretty well stays in the anal canal. Never have I seen any spots on my underwear.

Alot of the questions you would have to ask a surgeon.

I've had my ileo over six years. But I don't ever intend to get a pouch or bcir. I'm staying where I am because it works. I to feel healthier with an ileo. I'm not going to risk another pouch. No way.

Truth be told I did t know she was going to leave me as she did. I kinda wish sometimes she would had made it final by removing my rear end. Not that it would be any different.

When she told me I could try another pouch in the future I asked if she would do it. She had a definite no for an answer. She saw everything I went through. And knew me down to the bone after four surgeries and as many years.

Lol. I was not an easy patient. I wasn't an ass but she knew I was stubborn.

Richard.

@blood_stained_warrior I'm currently in that stage where I need to make a decision to go back to an ostomy. My stricture is causing so much pain. I have a lot of inflammation. I have to get dilation done every month to keep my stricture from closing up.  I thought I had to get rid of my pouch because I couldn't take it anymore but my Dr started me on Remacaide infusions and I already feel the difference. Pain has decreased and my pouch isn't acting up.  My bms have decreased also.  So definitely go thru all your options before going back to an ostomy.

@BillV posted:

My thoughts are to do everything to keep your J pouch and Cleveland Clinic is an excellent place to help you.  I had a J pouch for 30 years and recurrent high grade dysplasia and a malignant polyp in the anal canal that made pouch removal necessary.  I strongly did not want an ileostomy with its associated issues and was able to get a continent ileostomy,  They do the K pouch procedure at the Cleceland Clinic and you can inquire about it while there,  I have had my BCIR (very similar to the K pouch) for 9 years and it has given me a very good quality of life.  Please feel free to message me.   Bill

yeah nobody does the BCIR any longer, if in Cleveland I would go to University Hospital down the street and have Dr David Dietz do your kpouch surgery. He was trained under Dr Remzi and does alot of K-pouches.

@Mysticobra posted:

My pouch has been removed.

My anal canal and muscles still feel strong there.

It has to be cleaned. Which is no big deal. It has mucus. But it pretty well stays in the anal canal. Never have I seen any spots on my underwear.

Alot of the questions you would have to ask a surgeon.

I've had my ileo over six years. But I don't ever intend to get a pouch or bcir. I'm staying where I am because it works. I to feel healthier with an ileo. I'm not going to risk another pouch. No way.

Truth be told I did t know she was going to leave me as she did. I kinda wish sometimes she would had made it final by removing my rear end. Not that it would be any different.

When she told me I could try another pouch in the future I asked if she would do it. She had a definite no for an answer. She saw everything I went through. And knew me down to the bone after four surgeries and as many years.

Lol. I was not an easy patient. I wasn't an ass but she knew I was stubborn.

Richard.

I’m starting to have conversations about going back to the ostomy and whether a 2 step process (leave the pouch in place) or just getting it all done at once would be better. Complete excision is another major surgery that I don’t look forward to but I would never try another pouch after all the issues with this one so maybe should bite the bullet when the time comes  

What do mean by cleaning it out? Do you need to irrigate the mucus out?

Thank you for entertaining my questions. There is no great path forward here so trying to get as much info on various options as possible.

• Everyone's anal canal produces mucus.

It's normal.  A normal person doesn't notice it. I didn't when I had my colon. It helps when you go to the bathroom with evacuation of feces. Like a lube. Natural lube

As for me. No I don't irrigate it. It's so slight.

I don't want to be gross but I digitally clean it with soap and water in the shower.

My anal canal is no longer than an inch. Inch and a half.

No big deal..

My surgeon thought it was a good idea to leave my rectum at 5 cm and twist the jpouch. I had a redo and meanwhile I had 2 stomas again. I wasn't happy with the bag so I opted for the redo