Surgery here I come (Updated over years, from UC to Jpouch to Healthy Ostomate)

Sorry for delay in posting.

I think budesonide is starting to improve my symptoms, for which I'm grateful. Shen said I can stay on it pretty much until op.

How things are:
I've been rising from bed on average three times a night for the bathroom. During the day, I need to go about every two hours. Since Shen's "fix" I think the small amounts of blood I had are gone and there is less mucus. Still dealing with some incontinence. Pouch spasms and cramps that sometimes aren't relieved by BM's can get very debilitating. I'm fatigued very very often as a result of all this and am quite a homebody.

NCOT:
I hope things go well for both of us. Personally I am not willing to try anything new. I'm fine with a stoma and ostomy bag. I will wear a bag for the rest of my life. I will not do anything that puts my health or quality of life at risk just to avoid wearing the bag. If I had done things that way at the beginning these past two years of my life would have been much better.

Thanks for the well wishes. I scheduled today and am since feeling a bit antsy and nauseous. The first surgery was so harrowing that my vitals spiked when I went back into the same hospital. This is scary, but when I logically process my situation, what I'm doing seems like the best choice.

Hey all,

I will be having pouch removal next Thursday at Cleveland Clinic Ohio with Dr. Ashburn. I have set my anxieties aside as I feel very strongly that with the jpouch I will not have a stable, good quality of life and that I have considered my decision very carefully. The odds are that this will go well and I pray that I can have a normal ostomate's life.

Long term it is scary knowing that the bag will be 100% permanent, but I have overcome so much already. My gut says that a stoma will not be a *dis*ability, but rather an *en*ability (I made up that word). My brain says to follow that feeling.

I so wish that I hadn't made this mistake of the jpouch, but that is so much of life. Please wish (and pray, if that is your persuasion) for a successful surgery, without (significant or long-term) complications, and with an easy recovery!

I will update you all.

Good luck!!

Best of luck next week, Solomon - I am wishing the best possible outcome for you. My ileostomy was definitely preferable to what I have now. I sometimes used to find emptying the bag a bit of a pain; now I miss emptying the bag and being able to get up and go without worrying about having more stool to pass, butt burn (which can become absolutely excruciating if not kept under control), or anal itching/leakage.

That said, if I hadn't had the reversal I think I would have been constantly wondering "what if". I suspect you would have been too, so try not to beat yourself up for having given the j-pouch a go.

Thank you all for the kind words.

NSSG: While I guess it doesn't affect the bottom line (pouch has been terrible), of curiousity I will ask my surgeon what she thinks.

Personally, I think the following:

I had crazy high pANCA values before colectomy. While this is UC specific (and not CD), it actually is also a risk factor for chronic pouchitis.
I have had some response to antibiotics several times. That would lead me to believe pouchitis is implicated.
I had terrible UC, and my rectal cuff remains somewhat inflamed since my first diagnosis. I must have some level of cuffitis, more than most pouchers where it is negligible.
I came into surgery barely able to climb staircases and with barely enough meat to sit on my butt. Despite that, due to my desire to minimize the number of surgeries (the irony!) and my surgeon's (too?) high level of confidence, we did a 2 step. I was happy about that when I woke up. Now I think it is one of my greatest mistakes as if I had done 3 step I may well have happily forgone the pouch. In any case, I think coming into my first op so very weak set me up for failure, and it is probably the reason I had a pouch sinus for 1.5 years.
That pouch sinus may have been fixed, but it has done some damage to my pouch anyways.
I think that J-pouch has been heavily sold to us. I spoke to a high level jpouch GI in Germany and he interesting quoted a much higher pouch "failure" rate of almost 19%. This does not consider all the people with various issues who have not reverted to a stoma. Frankly, I think the jpouch is a much more risky endeavor than people are led to believe and it is not so incredible that I am in this situation, sadly.
Bottom line: combination of minor cuffitis, moderate chronic pouchitis, poor post surgical healing which resulted in a long-term, undiagnosed pouch defect, which even after repair left the pouch worse off.

Interesting. Did you try biologics with UC or your pouch? I think I remember you opted for surgery over drugs - which would have been a good plan if things worked out as you expected. I had a high pANCA too, as did blksteeda, if I remember correctly. I think you both had 2 steps. I had 3 step with mucosectomy. I am very petite, only a little over 5 feet. I haven't heard of the thing about shorter abdomens, but I know some taller people who have done very well with their pouches. I didn't like my pANCA reading and my chances with the j-pouch, but it was "go for it", or never get more than 10 feet from a toilet, and I couldn't live like that forever. 18 months of it had made my life a living hell.

Even though I had 3 steps, I was confident i wanted a j-pouch throughout the process. After the first step, there was a little question in my head, because things were so easy with the end, but with the loop, I just wanted to get through each day and reconnect ASAP. I wish you a quick, easy recovery & a very functional ileo, and a nice stoma

That's great news! I am wishing the best for you, you deserve it..please let us know how you get on and I will be thinking of you and sending positive thoughts your way next Thursday.

SS,

I was just thinking of you today and hoping that your surgery goes well today. Please update us when you can.

@NSSG Thank you for the kind thoughts.

I have what I think is a pretty darn positive update.

Surgery went well. The team was able to stay laparoscopic, successfully removed the pouch without removing any other tissues, created a nice (currently ugly but should be good) stoma, reported pretty minimal adhesion issues. Things went smoothly.

My surgeon told me that I definitely made the right decision and mentioned that my swollen stoma is a sign of how sick the Jpouch was. The sinus was not healed and IMO was the #1 contributor to pouch failure.

So far, so good as far as recovery. I am not expecting any long term complications (please God) and am generally very optimistic. I feel so validated after two years of being told that it's in my head or that I just need to take more immunosupressants. I just wish that we could have cut the BS sooner about the truth of this junk J-pouch.

I am remaining *cautiously* optimistic and will continue to update.

Excellent news.

Hoping all continues to go well. It's obviously extremely early days, but it sounds like you made the right decision.

Hi Solomon,

I'm glad to hear that the surgery went smoothly. Wishing you a quick recovery, and a well-functioning stoma.

That's amazing. I am so happy for you. It will be good to get back to living life without the challenges the jpouch was presenting you. Hoping for a quick recovery & a cute stoma. I had a really nice one with my end. The nurse said "if you're going to have a stoma, that's the one you want". I hope you have that one too!!