Need opinions on my next move.

Please. 

Read some of my posts. 

I'm doing fine with an end ileo. 

Richard. 

If it comes down to removing your j pouch, there are two options in addition to the end ileostomy that are available to you: the k pouch and the BCIR.  Both of these procedures involve creation of an internal pouch with a short section of your small intestine and they do not require an external bag.  These surgeries are complex and should be performed by a surgeon who has done many of them.  I encourage you to research all of your options on the internet and select the option that best suits your lifestyle and expectations.  Like Richard, I also have numerous posts that track my medical journey.  Also, please keep in mind that these message boards are not visited very often by those whose procedures have been relatively or completely complication-free.

Bill

I have looked into the k-pouch and BCIR, and honestly those don't seem like something I'd be interested in having. So I definitely will be getting an ileostomy if I do ever decided/ or need to have my pouch removed. But I will take a look at your posts! Thanks for the advice. 

BMarie, I can't tell from your post whether your cuffitis (inflammation of that remaining bit of rectum) has ever been adequately treated, nor can I tell if the protrusion has been properly diagnosed, and whether it's a significant contributor to your troubles. Have you ever tried Canasa suppositories? Have you consulted with a gastroenterologist with true J-pouch expertise? Pouch removal is a reasonably big step, so it's worth making sure the medical options have been well thought through, IMO.

"...caused by the couple inches of colon my surgeon left in for better functioning and control." Huh? Is that what you were told by your surgeon? A couple inches of rectum left is not normal practice and is apparently the cause of many of your issues. Normal practice is to leave 1-2 cm.

Since you are talking about an option that will require surgery anyway, if it was me I would speak to a surgeon at Cleveland Clinic - even if done via remote consult - before making a decision. Pouch advancement surgery might be an option that works to allow you to keep your j-pouch, but in a more functional manner. You may also be told at that time that an ostomy is a better option, and then you can walk down that road. Nothing wrong with an ostomy.

Steve

That's alot to leave in. 

All my problems came from just the teeny tiny amount left in to connect the pouch. Couple inches is alot. 

The very end is where my UC was very active and I was told from the start because of this my pouch may fail and it did. But I had to try it anyways.  

It's hard to believe but that's all that was affected to bring me to this point.  But that little bit caused as much misery as a full colon being affected.  My chances of getting cancer was high because of it. So it had to go. 

Richard. 

I agree with Steve -- I would discuss Pouch advancement surgery with someone from Cleveland Clinic or Mayo (depending on where you live).

Also, there is nothing wrong with having a perm. ileo. I remember when I had mine waiting between surgeries, life was pretty good. I ate what I wanted, took no medicine, slept great, lifted weights and had a social life. People that don't have GI issues don't really understand what its like living with the burden.

Yes, I was told inches. And this is the part that has never stopped acting up. My surgeon actually retired awhile back, but I wasn't seeing him after my surgeries because he was just a general surgeon at the children's hospital, I had my surgeries at 16. I'm now 22 and I can no longer go to the children's hospital, obviously. So I have been looking into surgeons who specialize in colon/ rectal surgery. It's just hard because my insurance is very picky. My GI doctor wasn't even that familiar with the j-pouch so it's been difficult. Im from a small town 30 minutes south of Detroit so I'm sure that's why it's not very common around here I guess. If I did go anywhere it probably would be Cleveland clinic, that's about a 3 hour drive. Anyway, I started my 3rd and last week of prescribed hydrocortisone suppositories, and other than my stools being a little more thickened I have had no changes in my symptoms. It's just so frustrating. 

Friendly update! So almost a year later, and the problem getting much worse I finally sought help from a specialist because none of my doctors were helping. Anyway, I have been diagnosed with a “ventral external prolapse of the distal pouch”. They also noted that to initiate and keep evacuation of contrast I needed to make multiple Valsalva maneuvers (straining & pushing). I now just need to get hard copies of my surgical records and I’m all set to make an appointment with Dr. Tracy Hull at Cleveland Clinic. This has been a long time coming and I can finally see the end. 

In your original post you stated a protrusion, how much was actually protruded and what did you do for it, just shove it back in? Did it happen every time you went to the bathroom? So what type of surgery are they doing to fix this?

About half an inch, and since then even more. It’s about the size of an egg, but it’s giving me problems with using the bathroom. It happens every time I use the bathroom and if I’m on my feet too long. And yeah, I would just kind of push it back in. I’m not sure what surgery yet, I have to see the surgeon still but I have enough testing done now to where they can see what’s actually happening. 

I couldn't live that way.

And I didn't.

I didn't have a prolapse but two years of j pouch misery was enough. If you've gone six years like this. Wow. I wouldn't have lived through six years. 

I hope you find an answer so your life doesn't revolve around the bathroom.

I found mine.

We can all find one.  We don't have to live in the bathroom.

Richard.

Sorry to hear you are still in agony with this.  I went back to an end ileo and my life is much better.  Would I rather not have an ileo?  Yes but it is the right choice for me.  There are several threads about this in the Ostomy Forum here.

Thanks Richard, I still can’t believe I’ve done it this long. I guess looking back I never realized what should be “normal” for a J pouch. But finally after finding this group I realized that these were issues and I needed them taken care of. 

Thanks Te Marie, the ileo is still a choice for me as well. The specialist who seen me here in Michigan and referred me to Cleveland hasn’t dealt with J pouch’s. But she told me even with her lack of experience she knows that someone as young as me, (23 yrs old now, 16 yrs @ time of surgeries), shouldn’t be having a prolapse. She says that it may just be my body saying that I can’t sustain a pouch so I may need an ileo. We shall see, I’m just really happy to get this journey of healing started.  

BMARIE, She referred you to one of the best places to go with j-pouch problems. I've always thought a good doctor is one that knows when they need to refer a patient to another doctor.  That's what my GI did too.