If the UC is not responding to treatment it will get worse over time and sooner or later there is a possibility dysplasia or cancer will show up.  I had UC for 20 years, the inflammation eventually went from where yours is now to involving the whole colon.  I actually did respond somewhat to prednisone but over the course of time my normal was being sick and being in flares.  When my colon finally came out it had dysplasia. My surgeon told me it was dissolving in his hands from the inflammation.  I clearly would have had toxic megacolon if I had not had surgery.

 

From what you have told us it is probably only a matter of time before things get worse, and if you wait around until things do get worse, your chances for a good result from surgery will diminish.

 

I certainly do not regret my decision and even though I have had pouchitis for 20 years, it is far more treatable than UC.  I have never had the explosive bloody diarrhea I had prior to having the colectomy.  I "traded up" in diseases.

 

Good luck with your decision.

Boy, I really would question your diagnosis if your rectum is not really affected. That is very rare in UC and is usually associated with the use of topical rectal medications. Crohn's colitis is not uncommon at all however, and some surgeons will agree to doing a j-pouch with that dignosis, with the understanding that the failure rate is more like 40-50% instead of 5-20%.

 

Basically, if you really do need colectomy, then it is best to do it when you are fairly healthy. If you really are getting cold feet, it is OK to cancel and reevaluate. It is important to feel truly ready for this, because there is no going back once it is done. Also keep in mind that even with frequent scopes and many biopsies each time, cancer can be missed. Cancer lesions due to UC tend to be flat and less visible. But, the cancer risks don't really go up high until 8-10 years from diagnosis. The risk keeps rising after that. So, you have time to warm up to the idea of surgery, unless one of those biopsies comes back positive or you get into a refractory flare.

 

Jan

Go with the surgery now when you are well enough to withstand it.  My husband never went into remission and was on steroids, which made him feel even worse than the disease did.  He made that decision to go through the J-pouch because he 1.) didn't want to go through more steroids and 2.) the chance of getting cancer in 5 years (he already had it for 5 yucky years).

 

Go and do it.  My 2 cents...

I  never really thought about the cancer risk because I was in so much pain and never completely in remission for the 4 years before I very reluctantly had surgery. I waited till there was no quality of life and did it at my sickest point. 
That said, I knew a man of means who was being treated by the best doctors who he flew to every six months. He eventually got cancer,  even with the agressive screening. He passed, leaving a loving family who miss him so much and a community he helped in so many ways when he was alive. So I say listen to Jan and be sure you are up for it, but do it sooner than later. We don't need to die from this disease but we can if we choose to delay removing the disease organ and let it develop into cancer. That is not putting blame on the patient. It's just the way it happens sometimes for some people. Just consider it.

If it helps, I'm 22, and I've never had kids. I had the surgery done when I was 20 after I didn't respond to treatments. And it was the best decision I ever made. Even if it doesn't sound like it at first. I hope this helps. My whole colon was severely inflamed, but it didn't really hurt at the time. It had become normal for me to feel that way so I just didn't think about it anymore. But I was crazy thin because my body wasn't absorbing my food anymore and that's when I decided to have my surgery.

My doctor swore up and down everything would go smoothly and I'd still be able to have kids after having it done and that I'd heal up great because I was so young. Well, I did a two part surgery and  the first part of my surgery had unforeseen complications. A two hour surgery became five hours and when he talked to me after he let me know that he was sorry and that I should not attempt to carry a pregnancy to term. Something about my organs not being able to stretch enough and they had to cut extra and things like that.

Those two months in between surgeries were the worst of my life. I had constant infections around the site, my bag leaked whenever I left my house, I was so weak I could barely walk, I couldn't shower so I took constant bird baths, and honestly it was such a weird feeling that I still get ghost pains of it sometimes. The pain was unbearable some days when I went to change the bag because of the infections, it got so bad that I would just cry and mutter to myself that I could do it. I had to take breaks while changing it because I would feel so defeated by that stupid bag. I honestly thought about giving up some days.

But as soon as that second surgery was done, I felt better than I had in years. I was up and walking that day even though I couldn't leave the hospital for a week. I didn't take any of the pain pills they have me because I never needed them. My j pouch only really leaked for the first week or so before I got full control and now I lead a pretty normal life. Some days I still feel bad, but I'm able to make plans with my friends and have a stable relationship without worrying about how close the nearest bathroom is.

Ultimately, it's up to you, and it's certainly no cake walk to go through, but if you have a support net to help you through it, you won't regret it. There's nothing worse than your own body fighting you, the least you can do is fight back. I doubt you'd have the same complications as I did, so you'll probably still be able to have kids, but even if you couldn't, it's okay. There's plenty of other ways to have kids, it's more important to improve your quality of life.

Sorry it's a novel. D:

So sorry for your really difficult experience Sacco... It is good to know that you are doing so much better.

 

To the original poster, I was able to have a child after the surgeries plus two scar revisions. Many go on to have children if they choose to. That's just an FYI. Of course there are no guarantees. Best of luck and hope for a speedy recovery!

Thanks everyone for the responses. Jan, I think the rectal sparing is due to the use of topicals, which is something I don't want to continue using the rest of my life. I know some people do and are fine with it, but it's just not a lifestyle I want. That alone sometimes reminds me I'm making the best choice. 

 

It's probably best to not wait until I'm super sick again so I can hopefully heal faster, but it's something where I'm like...I wonder how long I'll feel ok. I stopped using Rowasa for the past week or so just to remind myself that feeling sort of good (the normal for those with UC) is only induced through medication, and my hope is to be off long term meds. 

 

Another question though: Did anyone else travel a distance to a surgeon? I'm about six hours away from Houston, and have a lot of questions I'd like answered, but I'm not sure how many is too many before I should be asked to make an appointment between now and then. 

Yes, I agree that your ongoing use of topical meds will improve the appearance of your rectum. But, that does not mean it is not affected. It just means that portion is responding to topical treatment. So, you are right that your decision to go forward seems right for you. 

 

One caution I must put forward at this point is in regard to your desire to go forward with surgery to avoid medications. Please do not place your idea of success on whether you are able to be drug free. It simply is not a reality for many of us, and there have been a number of members here who felt misled, because they assumed or were told that they would no longer need medications because their UC would be "cured." I do see that you wrote that you hoped to be off long term meds, so it seems you are being realistic.

 

While a great majority of those with a j-pouch are satisfied with their outcome, many of us require bowel slowers long term, treatment for intermittent or chronic pouchitis, or develop other related autoimmune diseases that require the same drugs we took for UC. If your happiness depends on no drugs, then you may be setting yourself up for disappointment. You could be lucky, but just know that the incidence of pouchitis and other complications increase with time. I am one of those with multiple complications, but I am very satisfied with my outcome, and accept that there are no perfect options.

 

Good luck with your choice. I am sure things will be fine as long as you are flexible.

 

Jan

I found out for sure I had UC at 40. I will be 59 in a few months but had my colon removed at 58. Elective.  I chose to.
Looking back I think I had it all my life.  Just no big enough flare till 40 and was sick as a dog.  But simple meds put it in remission  for 10 yrs.  From.  50 till 58 I was up and down with it.
I was like you.  OK most of the time.  But had flares.  I won't go into details.  We all know. 
After my surgery I had the worst time in my life.  Problems cropped up... Not the surgeons fault... Just my luck.  I eventually had three surgeries I  a short period of time.
I thought I was strong.  But this knocked me in the dirt.
Now that I have had some time pass I think I just traded one problem for another.  Sure.. I can hold it.  I don't take any drugs but one.  That's an antispasmatic.  I take nothing to slow it.. .. Bulkers or anything.  My pouch is so inconsistent.  I... Most times have to force it out unless it is liquid.  If I take something to bulk it up I get constipated.
I am not trying to scare you.  Just my experience.
I wouldn't do it again.  I am still 30 pounds short of when I started. It's been a year and a half since surgery.  I lost 50. I eat all the time.  Just can't get it back.  I don't have the strength or stamina I used to have. 
Like I said... I am not trying to scare you.  I guess I was not prepared for what happened to me.

I had my surgery 1600 miles from my home, which certainly counts as traveling. My brother lived in the area, though, so I was able to stay with him on discharge. Also, I had a single stage procedure, so I only had to go through it once.