I'm doing the three step j-pouch surgery. The journey has had it's hiccups (a partial blood clot in July) but I've never come close to feeling as badly as I did before surgery. The ostomy is manageable, but I do look forward to being able to use the bathroom without products!
I do feel amazing ... So many people have told me that I look like myself again. It has been shocking to realize how much of myself I had lost during the worst parts of my illness.
As for prednisone dosing, my highest dose was about 40mg (except for a short span when they put me on 60mg, right before I decided on surgery). Most of the first four years was spent trying to taper down, and every time I got to about 10mg, I'd start to have breakthrough symptoms. The last year, I was able to taper off entirely for about four weeks, and and then I had a relapse and went back to 40mg a day.
It's really hard to make up your mind when surgery still feels optional ... I don't know that I would have picked it without being told it was my only option. It was a lot easier to accept when I felt like the choice had been made for me. And when you add in the hope when every new med seems to work for you initially, it must be hard to struggle with the right answer.
Here's my take: I would take my situation now over even my best day with US. Why? Because I'm going to stay pretty much OK, but when I was dealing with UC, I knew the good days would eventually lead to bad days.
Good luck ... Lots of people are pulling for you to beat this!
Oh wow Kanva, I feel like I'm walking in your footsteps. Since I've been bouncing up-and-down on my pred dose for the last 8 months and ended up in the hospital the last time I got down to 20mg, had rescue IV steroids, then back up to 40mg, now down to 22.5mg but still bleeding/unformed/urgency/etc. I may as well just have the darn surgery because I doubt I can wean under 20mg and even if I could then I could totally see having to stay on 10mg indefinitely. It's not like I'm having formed BM's with just a little mucus or blood on the toilet paper. I'm having explosive liquid D with odd pieces of stool and the toilet bowl is red with blood...at 22.5mg prednisone and on Stelara...the only thing that really "isn't that bad" is my frequency is averaging 5x per day, which is not bad in my opinion.
You are SO right in that I do not want to make the decision about
surgery. It's like someone telling you to walk across hot coals. Your instinct tells you NO.
You know when you shop for a plastic surgeon, you can look at their portfolio and see examples of their boob jobs, nose jobs, etc. Well wouldn't it be great if we could see examples of a Colorectal Surgeon's stomas?! I mean, why not?? And it wouldn't it be great if you could read detailed patient reviews like you can on amazon.com "This surgeon was a dick but my stoma is perfect and no my scars look good so 4 stars". I wish we had more information to base such a HUGE decision on. I really do feel, a "gut feeling" (ha) that Dr. Kann (colorectal surgeon) will do a good job for me. At least 50% of his patients are IBD patients and he has published his work in Crohn's patients and trained in good hospitals--I'm 110t sure Dr. Kann has more experience than the "newbie" Cleveland Clinic tried to schedule me with--a surgeon named Dr. Fish (almost nothing pops up when you google him except that he was a chief resident somewhere in 2009). I'm pretty sure I am going with Dr. Kann unless something crazy happens. How was your surgery performed? Dr. Kann said he would do mine laproscopically with 4 incisions, the largest being in the bikini area. I have heard of surgeries with fewer incisions and I am kind of vain so I'm curious how Mayo did yours. To be honest I need to have my boobs done again (had implants in 2000) and had planned to get a "mommy makeover" after having kids--I wish they could just do all that while I'm under anesthesia for the colectomy! Would be great to get it all done at once. It's kind of ironic that I'm so gung-ho about
cosmetic surgery but scared about
Speaking of vanity, did you lose weight after surgery? I lost almost 30lbs at my worst and now I've gained it back. I'm not obese at all, very average. But I'd like to lose 15-20 lbs and get in shape again. It would be fine with me if some weight "fell off" after surgery and weaning off prednisone.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE