Laura,
There is a lot of good feedback and info here...I hope it helps you get closer to understanding what mIHG work best for you. As others have said, I will echo that this site is often more frequented by those of us with complications. However, I will also say that my experience was that my local GI docs and surgeons didn’t have accurate info on complication rates, didn’t take into consideration my personal health, and were overly optimistic. Once I ended up at Cleveland Clinic and began reading the medical studies myself I saw how much guesswork was still being used in the diagnosis and treatment of colon diseases. Thankfully, it’s been an area with more study in recent years.
I was diagnosed with UC initially while pregnant at 32. I was managed with medications for 8 years and while trying at times, had no idea how bad things could get. At 40 I experienced toxic megacolon and spent two months in the hospital while doctors tried to save my colon, failed, then saved my life by removing it in deteriorated pieces. I have had 6 surgeries in the last 8 years and countless ER admits and several additional ICU stays due to blockages, large surgical hernia repair and other complications. I have had an end ileostomy, loop ileostomy, j-pouch (technically an ileoanal reservoir or ileoanal pouch with anal anastomosis) and now k-pouch (technically an ileoanal reservoir with continent ileostomy.) And there are those who have experienced far worse than I. But keep in mind, I also know people who have had no problems whatsoever after elective j-pouch surgery and know that they are in the statistical majority.
I moved on from the first ileostomy given to me at the time of colon removal because my local doctors were so convincing that the j-pouch was the best long term solution. (Keep in mind some of us ”pouchers” can experience this process in 1, 2, or 3 surgeries.) Then, while bagging the “loop ileostomy” and waiting for my pouch to heal before “take-down” surgery (normally 2-3 months), I had what I now understand was my first “flare-up” post colon removal. I had new skin manifestations (pyoderma gangrenosum) that made it all but impossible to wear an ostomy appliance (stoma bag.) But neither my local doctors nor I understood the long term implications of possible on-going auto-immune disease and instead thought it best to rush into the final j-pouch surgery as planned.
I had a j-pouch for 5 years, all of which were a constant trial and it was during this time that I found j-pouch.org and learned what I’d been missing. I also began reading all the medical studies myself and learning a lot about things my doctors either didn’t know or didn’t talk about. God bless those who make this forum possible and continue to contribute and make it so valuable — this is where I heard about tips and tricks or treatments to cope with my on-going problems. This is also where I learned about Dr. Shen at Cleveland Clinic and about my last surgeon, Dr. Dietz, and the better option for me called the k-pouch (Kock Pouch.)
I respect everyone’s respectful opinions and understand we all speak from our own experiences. For everyone who trusts their surgeon implicitly there are also those that don’t for good reason. Sometimes a doctor or surgeon can be misinformed and make a poor recommendation through no fault of their own. And sometimes a good or bad outcome is just luck. A good outcome doesn’t always mean the path followed was correct — it may have just worked out. Likewise, a poor outcome doesn’t mean the path followed was incorrect — sh*t happens.
But if I were you, I’d want to know what is possible, not just probable. I’d want to know the actual numbers of what my chances were of experiencing what outcomes. I’d want to know a lot more about what experience my doctor, surgeon, and hospital have with my disease and who/where has more. Specifically, I’d ask what my chances are of experiencing disease (in your case polyps) in the parts that remain with a j-pouch (stump?.) Then I would make the best choice for me, with little regard for what a well-meaning doctor/nurse (with nothing but respect) who doesn’t live with me and my family or my disease might suggest. They usually mean well, they just can’t know what they don’t know — especially Y-O-U.
It turns out that having toxic megacolon was one of my early signs I might not be a good candidate for the j-pouch (sign of disease severity), as was having extra-intestinal manifestations (skin & joint inflammation signaled future pouch & stump inflammation.) Having had fourth-degree tears during multiple 10 lb childbirths didn’t help either (repaired pelvic muscles lead to rectal prolapse.)
Since you have FAP, I would focus on discussing with your doctors (2nd opinion?) the things that are specific to your general health and your experiences with the disease along with the process it has taken for you (& your family?) From what little I know, it is a totally different disease process than IBD (C&UC) and, though some of the surgical solutions are similar, likely has its own different set of implications. It’s not about stressing yourself out as that only makes things worse. You can’t know the unknowable either :-) PIck what matters to you, ask those questions or do the research and then move forward. I’m glad to know you will find more info and support on this forum!
Bless you on your journey & blessings for the best possible outcome!
Jennifer (Michigan, USA)
