Just wondering who has elected to have surgery. I am having surgery because I decided against immunosuppresents. Are you happy you did it or am I making the wrong choice?
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Essentially, only you can choose which options are right for you. If you feel that you do not wish to try immunosuppressants and biologics, then colectomy with or without a j-pouch is the only choice if you cannot achieve remission.
I elected to have surgery after 6 months of high dose prednisone was ineffective and I was losing blood continuously. At that time Imuran and biologics were considered experimental. Otherwise I would have tried them (if I had time). I certainly do not regret having had a colectomy, as I probably would have eventually died.
Me. J Pouch.
Ended up with an ileo.
Should have just got the ileo.
Not saying you shouldn't try it. I would have regretted not trying. It may have worked.
I did it because I had UC for most of my life and it was only getting worse. I tried all the drugs.
Remicade worked and put it in remission for 10 years but when it quit working UC came back with a vengeance.
For three years I tried a variety of medications in attempts to control my ulcerative colitis. My final try was with 6MP. I got pancreatitis and that was it for me! No luck no matter what! Enough! After my Step 1 surgery of two steps I experienced a year of healthy living with an ileostomy. I've had my J-pouch since 2003. It is my best friend! Best wishes!
My two cents, since I had to have mine because of dysplasia. Remember that you still have the genes and over run immune system even if you have no large intestine. I had no extra intestinal symptoms prior to TPC. I was taken off all of my meds. 9 months later began having joint pain, and other more bizarre things (that likely wouldn't happen to you) --- and have now failed the medicine that used to work for me perfectly. Now - I am starting Humira. So biologics, which when I still had a large intestine, was my "worst case scenario". Now after living through a colectomy and all the 'adjustment' to a j pouch -- heavy duty immunosuppressant seems like nothing.
My point is simply, you do what is best for yourself but if there was anyway that I could not have required this surgery -- I would have jumped at it. Whatever parts that you can keep that are naturally doing what they are supposed to be doing well(even with drugs) is better than any surgical alternative. My opinion, but I was for appearances healthy beforehand.
Do I regret the surgery? I had dysplasia (DALM)It was a bomb waiting to give me cancer in there (50 polyps they didn't even see before), so I don't. I am alive and plan to be for a long time.
What is the fear of the biologics? (I get it since I was scared before too, but I am just asking).
Mine was Elective. I was on all the basic stuff, Asacol, Lialda, Prednisone, Imuran, steroid enemas, there were a few more pill names i forget. none worked except prednisone but we all know you cant stay on that stuff. I moved on to Remicade, was good for a few months, then i started have an allergy to it, alot of itching for days at a time after infusion, came off that, went to humira, that worked for almost a year but then it gradually started to work less and less. next stop was either methotextrate that was not approved yet so i would wait or talk about surgery, so we talked and i researched a few doctors, found one, did a consult, he made it exceptionally clear he doesnt recommend the J-pouch and that an Ostomy is best but that he would do J-pouch if i wanted to try it, so with the feeling that he would do it half-ass with that kind of attitude i looked for another and found a wonderful doctor, Dr Kerry Hammond at MUSC to this day shes my go to for gastroenterology, weve become good friends, she was at my wedding a few months ago. only thing i wish i would have tried first before surgery was VSL3-DS, it may not have done much or anything but something just says i wish i would have tried that first.
Mine was elective due to dysplasia. My UC was basically symptom free for 14 years so it was a huge bummer to say the least. It was a hard decision going into it, but once they removed my colon and told me it was mostly high-grade dysplasia at that point, I was so relieved to have that inevitable cancer threat removed from my body.
Mine was also elective due to dyplasia. However my surgeon wanted me to lose weight before he would cut me (only 10 pounds, but since I was taking 50-60 mg of Prednisone at the time, it was a struggle).
By the time the surgery date finally came, I had deteriorated badly, although I did not feel substantially worse and didn't know how bad things had gotten until I spoke to my surgeon for the first time after surgery. He told me that my colon was dissolving in his hands from the inflammation as he took it out. It's fairly clear that I was maybe weeks away from having toxic megacolon, and if that had occurred it would have been a choice of emergency surgery or death, or perhaps both.
Needless to say I am glad I had surgery when I did. I do not know how often this type of rapid deterioration occurs, but it was about 9 months between the last colonoscopy I had and the surgery. In between, I waffled on the decision because my dysplasia was low grade, and then it took time to get an appointment with my very busy and at that time well known surgeon, then more delays when he told me I had to lose weight, then before you know 9 months had gone by and I am in bad shape but didn't feel any worse than I had during the prior 9 months. I was having a lot of pain and bloody diarrhea all along during that time.
Mine was elective but I was also mostly out of options. I gave Remicade a try but it didn't work. In hindsight, I wish I skipped that and had surgery sooner. I wasted another year on meds that didn't work. There's no right or wrong decision.......just your decision. Good luck!
Sort of, kind of elective...no other choice other than an outside bag and I was 18 and that was not a choice at all for me at the time.
I had to force my surgeon to accept me at the time because k pouches were brand new and still on the 'human experiment' list...I was 13th for my surgeon.
My husband was sicker with the steroids etc. Also, the thought of getting cancer loomed in his decision of having his colon removed and getting the j-pouch. 21 years later he is happy with his decision..
I still have not come to reconciliation with this procedure done 8 years ago it changed my life I deal with bad depression
Mine was entirely elective - no dysplasia, just a lousy quality of life. It was the best decision I have ever made. I got my life back, and was able to start activities that would have seemed impossible when I was sick: martial arts and scuba diving.