Hi Pouch,
I can definitely relate to you, as I am enduring a similar situation. I wont reiterate is this thread what I have posted elsewhere.
my life has sucked since feb 5, when my supposed one step became a two step with a loop. I have been tired ever since. I went from a hypertensive individual to a hypotensive individual. I am self employed and I really want to get back to work but each surgery and/or hospitalization really set me back and reset the recovery clock.
I still cannot see how this pouch will work the way it was sold to me. To be honest, while I am not a suicidal person, there are some days I wish I would not wake up the next morning. I have no positive thoughts about any of this and given a chance to redo everything, I would choose a different path.
I know there are success stories out there, my mother in law being one of them, but I cannot see my future with this pouch, other than not dying from CRC.
I do know that I absolutely do not want any further surgeries in my life. I do not think I would survive it in any case.
Thank you for your posts. I find them to be very helpful as they validate my feelings on all of this. I now know than I am not the only one struggling with this thing they built into us.
I hope we achieve the new normal in the coming weeks and months.
best regards,
eric
You’re definitely not alone. My period of suck began December 10 with stage 2 ( J pouch formation and loop ileo). I never thought I would be as sick as I was a year earlier when I had my subtotal colectomy and was inpatient 5 weeks, transfusion dependent, on methylpred and cyclosporine, trying and failing to salvage my colon. I had to regain 30lbs and rebuild a lot of strength lost to steroids and immobility. And get used to the bag. But after 3 months I was back fully. And I was wrong. It could and would get a lot worse. I was forced into stage 2 by an ongoing flare in rectum that required steroids. Obviously, the option to have a permanent ileo was discussed but it was more of a side bar conversation, like sure you “could” opt for this but it is PERMANENT and the success rate of J pouch surgery is so high most people get the pouch. You never think that you’ll be the one with the abscesses, obstructions, leaks, etc. It is nearly impossible to fully appreciate and weigh these theoretical risks. I spent most of the last 7 months in the hospital and here I am, nearly 2 months post takedown much sicker than I was with a bag and a little rectal flare. Transitioning to long-term disability from STD was truly depressing. Like you, I just want to get back to work.
I remember you mentioning that a surgeon told you not to expect high satisfaction with the pouch as your UC was under reasonable control and I guess I’m in the same position. The expectation was improvement from an end ileostomy and rectal UC, and the pouch has not afforded this. Had I been where I was a year and a half ago, sick as a dog, maybe I would feel differently. It’s impossible not to have regrets. I hope time will improve this for both of us, but in the meanwhile, I’m trying to systematically address all factors that might be contributing to this suck.
In addition to addressing strictures and pouchitis, etc. I view the mood aspect as part of this as it can certainly contribute to/exacerbate pain, poor appetite and fatigue. Like you, I cannot imagine going through another surgery so my goal is to get to a place where if that is necessary, I don’t fall further into the abyss. Please don’t think I’ve found a solution to all this. Everyday is a struggle, including mentally, but I feel like I’m now hanging onto the wall with an ice pick, maybe a third of the way up the gaping pit, rather than lying on the bottom facedown, suffocating. It’s small solace but I guess progress. Feel free to PM me if you wish. I’m an open book and happy to share any little thing that may help. I’ll also try to update my own posts so others can see how things do or don’t resolve. I found updated posts most helpful in my own searches of this forum. You have my full empathy and best wishes.
