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9 replies

To have surgery or not?

KW Kim WMember
I am reaching out to all of you as I try to decide if I would like to proceed with JPouch surgery. I am scheduled for surgery March 4th.
I was diagnosed with UC in 2006. I have tried many meds including Lialda, Rowasa enemaa, hydrocort enemas, Azothiaprine, Humira, and now I am on Remicade. Intermittent use of Prednisone for flares- recently tapered off prednisone about 2 weeks ago- never really in full remission. As well as many alternative treatments including Acupuncture early on, homeopathic treatments, diet modifications- gluten free about 4 years now, recently underwent food allergy testing and have modified my diet again.
I had fairly good response to Azothyoprine however my white count got too low therefore I was unable to tolerate a therapeutic dose.
The few people I know who have had the surgery did so in distress - really faced with no other choice. I am wondering if I am truly sick enough to justify such a drastic surgery.
I go the bathroom about 5-7x/day. some times diarrhea sometimes not. Biggest issue is urgency which is inconsistent and distressing at times. Minimal bleeding. And of course the ongoing worry of potential flare and need for chronic steroid use with all of its downfalls.
Any input is appreciated.. anyone out there with a similar experience??
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mgmt10mgmt10Member
You should sit down and make a list of pros and cons of having surgery. Really ask yourself how your quality of life is. How does UC effect your daily life? Ask yourself how it effects your work and relationships. Also ask yourself if you are willing to keep on the drug roller coaster. I was totally fed up with those crappy drugs.

I struggled with the decision to have surgery for about two years prior to having it done. Then, I got really bad and couldn't get stable. I had no options left and scheduled the surgery. This procedure gave me my life back. Looking back now I wish I didn't drag my feet for those two years and had the surgery sooner. I think my recovery would have been easier if I wasn't so ill going in.

It's a scary, tough decision to make. Just realize it's easier to bounce back from surgery if you're not really sick like I was.
Jan DollarJan DollarModerator, RN, retired
Like Marianne said, weigh your options. If you are on prednisone often, that is a clear indication that surgery is your best option. But, you do need to be 100% on board for it. If you are having doubts, don't go forward with surgery, at least not yet. If you are not really ready for it, you will be second guessing yourself and kicking yourself every time you have a bad day. And you will have bad days post op, guaranteed.

But, you need to divorce yourself of the "am I sick enough for surgery" idea. That is because you keep yourself bumping along with prednisone or whatever. There may be some medical management options you have not tried yet. Not a perfect solution, but there really is no perfect solution.

While waiting until you have no other choice is not the greatest idea, I do understand it. At least you feel that you left no stone unturned.

But, again, I fall back on the "surgery only if you are 100% in favor of it" notion. Do not let your surgeon talk you into it, or even us. You have to believe it is your best shot at a good outcome. Plus, you have to be willing to accept some trade-offs.

That said, I am happy with my j-pouch, warts and all. It saved me from certain death, and I am able to live a full life, even if it is imperfect!

Jan Big Grin
suebearsuebearMember
I never even thought of 'quality of life' when I was researching surgery. It was only when my surgeon said that was the #1 reason to have surgery that it clicked. I was working fulltime, I was keeping my UC at a simmering level with prednisone. I was exhausted; too exhausted for a social life. I had to cancel a trip to Europe and I could never keep a commitment. I thought all of this was 'normal'. I was wrong. My quality of life had slowly been taken from me to the point that I didn't realize I had much of a life. I had done all the drugs and was out of options and believed my surgeon when he said he could give me my pre-UC life back. He did.

Sue Big Grin
KW Kim WMember
Thank you ladies so much for sharing your views and personal stories. It is very helpful. I will make a list of pros and cons.... Most of the time I'm certain surgery is the right choice for me, then a good day comes along and I have my doubts. Probably partially due to the fear of the unknown. I think my family is more affected by this then I like to acknowledge. They are very supportive of me when I'm down and throughout my treatments. I think they feel surgery will solve all the problems? I don't know if they grasp the extent or seriousness of the surgery? I often wonder what new problems it may bring me? I've gotten use to dealing with UC... Although it is no fun at least I know what to expect. Your stories of positive results are very encouragingSmiler
Thanks again!
C concertboyMember
Hello Kim:

Having shared most of the medical history you have outlined, I understand what you are going through. I had my jpouch takedown in May of last year. I tried to weigh the options as best I could as well. Researching things ahead of time really helped. It sounds like you still have the option to try and keep your colon. One thing that had a big impact for me proceeding was I was afraid of what all the drugs would do to me years down the road. For me the jpouch has been great - not perfect but pretty darn good. No more drugs and I am back to living life. I wish you great health moving forward whichever way you decide to go. Be well.
ElmerFuddElmerFuddMember
A lot of good feedback here. My experience was also kind of forced - it was surgery or bleed out. Totally unexpected too after 24 years of minimal issues.

Anyway, I will tell you that even with my prolonged, year-long "adjustment" period to my j-pouch, I am very happy with things now. Enough so that when my daughter was diagnosed with UC at age 6, it wasn't much of a decision for us when prednisone was the only thing maintaining anything close to remission (not Humira, not Remicade, never did start Imuran with her). We consulted with a surgeon and scheduled her for j-pouch surgery. She is doing very well with it.

That said, there are always trade-offs and you really can't predict the outcome / issues you may or may not face. It is good to know that a positive outcome with a j-pouch is more common than a negative one.

Steve
H HarleanMember
Please investigate the colon cancer rate among long term sufferers of UC. Do you want to feel sick for the next ten years on and off and then deal with colon cancer or anal cancer? My decision was to be done with my colon, though by the time the docs agreed, I had no choice. Ask your doctor and surgeon separately. Do you really want to feel horrible for ten years to save your colon only to lose it to cancer? ASK YOUR DOCTOR And SURGEON. Insist on a straight answer and good luck

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