Looking for people with MILD UC only

I'll have to remember her name...I'll ask Sherry or search for her on the CD board this evening.

You've been through a lot already...I wouldn't say you're a coward...maybe being cautious and "calculating" at this point. I would think it's best to know all the probabilities regarding surgery than being backed against the wall in case of emergency.

Is it medication that helped your stricture?

q

Definitely very cautious :-/

I have spoken with a colorectal surgeon and a stoma nurse already. The surgeon took me a bit by surprise by seeming to assume that I was going to have an ileostomy! Not, I hasten to add, that she tried to pressure me into having surgery in any way. But the difference between GIs and surgeons makes me laugh a bit. I've never known a GI who wanted me to have surgery, whereas in the limited dealings I've had with surgeons, they really do just want to seem to cut out things. According to my GI, when I was in hospital and after they had found the stricture, there was a disagreement between the gastros and the surgeons. The surgeons wanted to operate; my GI argued in favour of carrying on with the Remicade. The GIs won, obviously, as I'm still surgery free.

The stoma nurse was lovely. If ever I do have a stoma, at least I will feel confident in having a caring nurse to help - unlike the IBD nurse, but we won't go there...

Yeah, it was steroids which helped the stricture - at least the first time. I had a colonoscopy shortly after leaving hospital and the stricture had apparently gone. But it was back two months later, as I ended up in hospital with another obstruction. I was given iv steroids again, but that time they didn't appear to work so well - as the week after leaving I had a couple more obstructions. But those ones I chose to ride out at home, as I felt more confident about knowing what I was dealing with, plus I couldn't face returning to hospital so soon after leaving. (Every time I went into hospital, they kept me in for several days. It seemed like they couldn't get enough of testing my stools...)

Oops. Sorry if I wrote too much. I get carried away sometimes... <_<

Surgery is not an option for me, it's far from my mind because I dont intend to get sicker. I also agree with a few on here when they say, we've had visitors of J-pouch'ers and their horror stories with the surgery's results, it doesnt sound like it cures a whole lot. Removing a large organ like that is dangerous and only bound to cause problems, its honestly just a money maker in my mind, but I would understand why people do throw in towel and decide to get surgery. I would never look down on them, its just a shame that doctors don't do a little bit bit more to help before suggestion this action -and there is always something more to do.

Well, what i'm saying is I wish my doctor had originally told me about how making dietary changes could potentially help me and maybe others. That information is of value, before suggesting surgery in my opinion, no?

No, there's not "always more to do." When your colon has perforated, or is close to perforating, it has to be taken out. Period.

I guess depending on how long you want to prolong the surgery and quality of life. But, I also would suspect that without a colon, one would have to adjust some foods anyway....since the process of its function has been eliminated.

I, however, would prefer to learn how to function without a diseased colon and have some control over bms, etc.

It's control either way....

q

This disease does not follow the same path for every person. I was in remission for the better part of the 14 years I was sick. One day the meds stopped working, and in the year and a half I "tinkered" with different treatment plans my colon became diseased with severe high grade dysplasia. Could I have tried Remicade? I could have, but at the expense of my life, more than likely. Those precancerous polyps and cells, that were already beginning to change, were going no where, and no doctor would touch my colon in the shape it had been for AT LEAST a year with a scope, regardless of whether or not the Remicade put me in remission. It took less than a year and a half for the dysplasia to form, so a year may have been too late for me. My GI told me I had an angel on my shoulder when I decided to have it out.

Those of you who are so very against surgery . . . why is that???? The colon is only needed by land animals for water absorption. It is not a NECESSARY organ. So, that being said, is it a psychological thing?? I just don't get it. For me, it just seemed like a rational decision to have it out and cure my disease. I have struggled through complications since having my surgery, but they absolutely pale to the problems I encountered and the angst I went through with the disease. I understand wanting to try treatment plans within reason, but if the disease is relentless past that 10-year mark, it is time to at least consider surgery.

I am editing this to add: the colorectal surgeon did NOT want to perform the surgery on me.  I am 36 years old with blonde hair, blue eyes, 100 lbs (95 now) and a muscular, long distance runner's body.  I have three small kids.  He felt I was too young and that my quality of life and body image could be changed for the worse.  My GI, who had seen me suffer over the years, was the one who pushed and had nothing to gain financially.  Generalizations about all surgeons pushing surgery are not accurate.

Post Edited (uc_free) : 5/25/2012 2:49:10 PM (GMT-6)

I had severe UC when diagnosed in 2007. Since getting on Asacol and Rowasa, I have been mostly symptom-free, with some mild rectal inflammation sticking around. I have never gone back to completely normal but my symptoms are usually not too bad the majority of the time. Most of the people who are feeling well are out living their lives, not posting on an internet forum.