Thanks for the Positive Stories

It's fairly common to have unexplained improvement in a flare after surgery is scheduled. Others can venture guesses as to why, but it's definitely been reported many times here and elsewhere.

If you're been in a flare continuously for 2.5 years, first of all you have my sympathies, and second of all, you are that much closer to dysplasia or cancer. A pathologist friend looked at my colon after my colectomy (~9 months of continuous flaring) and said he thought I would have had colon cancer before I turned 30. That's not WHY I had surgery, but I sure was extra glad I had when I heard that.

I think everyone will tell you it is better to do it while you are clear headed and relatively healthy. It is powerful to be able to CHOOSE surgery rather than go to the ER and wake up with an ileostomy. I'm not saying people without severe UC should have elective surgery for the fun of it, but short of a miraculous full remission, I wouldn't cancel.

Oh that colon will start behaving once it knows divorce is in the near future. Don't you believe it. If you cancel surgery it's back to life as before. They're naughty that way.

Pluot/Liz said it even better!

I wonder if the 'remission' comes from taking control of your life. Up until now, the UC has controlled you. Once you make a decision to have surgery, maybe a sort of calmness sets in. Because, you know, no one has ever accused us of having A-type personalities. Or maybe they have.

The best of everything next week!

kathy

Certainly active IBD can play a real mind**** on you, since unpredictable relapse and remission is the way it goes, and remission can be spontaneous regardless of what you are or are not doing. Just because you are doing less worse, it does not mean you are in remission. Maybe Remicade is helping some, maybe not. Just know that you can call off the surgery at any time up until you are under general anesthesia, so it is OK if you get cold feet and want to rethink it all. Of course, you are correct that postponing could wind up being a mistake. You just have to go with what feels right, since there are no crystal balls.

As far as cancer goes, try not to get too worried about that (at least not now), since cancer rates do not go up until 8-10 years after diagnosis. What is most important is for you to be 100% in favor of this surgery before you proceed, or you might be playing the "what-if" game with yourself if you have any complications. It is normal to be apprehensive, but if you really are overwhelmed by it all, it is OK to rethink things.

I feel "lucky" in that after 23+ years, when I went into my final flare, it just got worse and worse until my only other choices were death or ileostomy. I did not have any hint of remission. I had many complications, but I have since come out whole, happy, and at complete peace with my choices. I wish the same for you (sans complications)!

Jan

I went through the very same thing with a Kock Pouch decision. I have been living with a J-Pouch for 16 years and have had my ups and downs continuously. I have had some really bad days and I have had countless good days but my pouch does rule me. I worked a full time job (retired now), socialized a lot, went on vacations, etc but the crying baby of a pouch just does not let up. I made two appts for Kock Pouch surgery. One I canceled the last minute (13 years ago or so). I just could not pull the trigger and hated myself afterwards because all of the same problems continued. I controlled my bowel with Tincture of Opium and Lomotil and it got me by but I suffered a lot too. Come 2006 and I said I am sick and tired of this and made another appt for a KP. I was ready this time and lo and behold, I found a lump in my breast and guess what - breast cancer - so now I have to cancel that appt and go through a lumpectomy and radiation. I thought maybe this is a sign not to do it(stupid me) but nothing has changed. I have been to every good J-Pouch dr in CA and even went to see Dr. Fazio and Dr. Shen in Cleveland. I was put on different meds in hoping for improvement but nothing worked. I still agonize over the KP surgery but I ask myself what if my outcome is worse than my current issues. I am lucky I have a very supportive husband because anyone else would have left me with my indecisiveness. My J P surgery was an easy decision since my UC did turn into cancer so that was a no brainer for me. I am in no position to recommend anything to you since I am stuck in my situation but the advice given to you so far has been good. I know the roller coaster feeling and the closer to a surgery date, the more apprehensive you can get. I do have to say I regret not going through with the KP surgery the first time because I may have had a very successful outcome and to this day would not be ruled by a disfunctional pouch. I really feel stupid that I have put up with this for so long. I wish you the best in making your decision. And you are right, most people posting are ones with problems and the success rate for JP's are very high.

Hi Lisa,

i had a similar experience with regards to my condition getting better after i scheduled surgery. i had colitis for 24 years, but most of that time i was in remission. the last year and a half my condition started to become unresponsive to my maintenance meds. had to go on 60mg of prednisone to get it back into remission. got off the prednisone and started to show signs of a minor flare a month later. because of that and also having dysplasia, i decided to have the surgery (took me a year to actually make the decision).

once i made the decision, my flare started to go away. asked the same questions you did. only you know when you are ready.

i had my 1st surgery last may and then takedown was in august.

i will say that i am very happy i went through the 2 surgeries in good health. i am sure my recuperation was that much better because of it. it was still no walk in the park, but i am sure it would have been MUCH worse had i waited until i needed to because my health deteriated. i am 8 months post takedown and things are going well. i am on a low dose of ciproflaxcin (500mg once a day) because it seems like i have been dealing with pouchitis over the last month and a half. i will have a scope done next month to see how my pouch looks and we will make a decision about the cipro then. i hope to not have to be antibiotic dependant, but i will cross that bridge when i get to it. other than that, life has been great. fully active with my 2, 4 and 20 year olds (and another baby on the way in august!), not living in the bathroom (average 5 times a day since i have been on cipro), can eat and drink anything i want and just enjoying life in general.

it is certainly a scary decision and one not easily made. i wish you the best of luck in whatever you choose, and know that the odds of a successful j-pouch are in your favor.

peace,
mark

Thank you so much for all of your words of wisdom. As you know, it really helps hearing other people's stories and as well as being able to talk things through with others who are/have been in the same boat. I think that deep down, I really have made my decision, but somehow needed approval that it is the right one. My colon decided to reaffirm it for me at my last bathroom trip.

@Donna, I do hope things turn around for you and that pouch. As I am new to this, is it possible for you to say, "see you later" pouch and go to a bag? I know part of that is personal preference.

quote:

Or is it just UC being the unpredictable, roller coaster ride that it is?

Because of this, I am struggling. Do I go ahead with the surgery while I am on the healthier side versus having to do it later when things get really bad? If I cancel it, are things going to get much worse soon after?

Nobody can know the answer in your specific case.

I had UC for 20 years and I had a similar pattern until the last year, when things mostly went downhill for me. On my last scope in 1991, I was determined to be exhibiting low grade dysplasia and the UC had progressed throughout the entire colon. At that point I did not feel appreciably more terrible than I had previously. My GI recommended a colectomy and told me to do it then, while I was still young (28 at the time) and relatively healthy.

Over the next few months I flip flopped several times until I finally went to see a surgeon for an opinion. He at the time was if not the best colorectal surgeon in the USA, one of the top 5 for sure (he did the first K Pouch in the USA). He told me he would not cut me until I lost 10 pounds. Due to Prednisone I was overweight, but not fat or obese, at the time.

I lost the weight and surgery finally happened in April 1992. By that time I was on 60 mg of Prednisone and that pretty much got me through the surgery alive. My surgeon told me that my colon was dissolving in his hands as he took it out. Clearly, had I not had surgery, toxic megacolon and death would have been in my future long before colon cancer would have developed.

In hindsight, I waited about 5 years too long to have the J Pouch surgery, although it was not really being recommended aggressively until after about 1990 or so. And at that time I was in law school. I started law school in 1988 and graduated in 1991. I was found to have dysplasia shortly after passing the CT and NY bar examinations. I realize that the surgery had to happen then and after that I could have my career. In looking back however, things really started going downhill for me in 1988 (1st year of law school) and then recovered somewhat until the dysplasia finding in 1991. I think the rollercoaster nature of UC lulls a lot of people into delaying surgery. The risks of not having surgery are toxic megacolon or cancer, both of which could be fatal. I believe colon cancer is the #3 leading cause of death in the USA at this time. But there are risks of having surgery as well. Like I said I have never second guessed my decision in having surgery, only in not having it done sooner. Circumstances largely got in the way of that, but it all worked out for the best in my case.