1) Am I really going to have 5-12 Bowl Movements per day? What was your experience with this.
After your recovery it's more like 6-8 in a 24 hour period. But it's in no way like having a bowel movement with a colon. It's as simple and quick as urinating. How many times do you urinate in a day? I bet you don't know and either do I but every time I have to pee I empty my pouch.
2) How often did you end up in the hospital with dehydration since your large bowl was out? I know there is a lifetime risk with this and I have to be attached to a water bottle with gatorade at all times.
In the 8 years with my jpouch I have never been hospitalized for dehydration. Some find they drink more post surgery but I don't. The only time I use electrolyte beverages is during extreme exercise, 100-200 mile hikes, or packing in and out of the Grand Canyon where temperatures are extreme. There are much better hydrating beverages than Gatorade and if you opt for a jpouch or an ostomy I would recommend you switch.
3) The doc said that UC can turn to Crohn's. Has this happened to anyone?
UC never turns into Crohn's. If you are later diagnosed with Crohn's it means your UC diagnosis was incorrect. There is not 100% definitive test to differentiate between the two.
4) Did you have nighttime soilage?
For a few weeks post surgery I had a bit of this but it resolved itself and I don't have it anymore.
5) Since the stool is never formed, do you have to live with urgency anyway and stilll need to know where a bathroom is or do you have more control than you did with the diarreah caused by your disese.
Stool with a jpouch is formed! I do not have diarrhea! This is a comon misconception and even my GI thought I would have permanent diarrhea!! WRONG! Some foods, like lots of sugar, can make things looser but most of the time my stool is formed. I eat tons of fresh fruit which helps with bulking. I NEVER have to know where the bathrooms are, what freedom that is! I never have urgency.
It seems that there are more cons with the pouch than the ostomy bag which I have as of 1/8/09 after cyclosporine failed to save my colon. I know you feel differently about this but I feel like I will be symptomatic like I was when I was sick with the frequency issue. I am so anxious and feel so frustrated with all this crap that goes along with this disease. I am glad to have someone to talk to that has gone through these issues. Thanks for your advice.
There are pros and cons with every surgery for UC. But 90-95% of those who opted for jpouches are happy. You need to write down the pros and cons and decide for yourself which is the best option. For me preserving my ability to backpack and hike were TOPS on my list. I couldn't do those things with an ostomy. Also the expense of an ostomy was considered. Supplies are expensive and take up lots of room when traveling for long periods of time which I do. Those are my reasons for opting for a jpouch. Again though, there is no PERFECT surgery but there is a surgical choice that best fits you!
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free