Dr. Suggested Surgery

I hate taking medication. I hate it. Given my aversion to medication and my general personality, my Doctor suggested that I just take the plunge and have the surgery. My father had UC and had the surgery because he had no other choice, so I kind of know what its like.

Over the last year, under the guidance of a very poor Doctor, I've flared every 3 months, each flare lasting about a month. I was then hospitalized this last flare diagnosed with C. Diff, scoped, and was told that my colon was in very poor shape. The Doc prescribed prednisone starting at 40mg, taping 10 per week. I started 6mp week three of the prednisone taper. I'm also on pentasa 4000mg dialy, multivitamin, and vit d, vsl 3. I'm finally in remission - I say that lightly because its the very early stage of remission where I can finally eat some normal food and bowel function is at about 80%. I've been sick for nearly three months. This has been the worst flare to date simply because I didn't have a Doctor, couldn't eat, and let it get way too far out of control.

I don't want to have the surgery. I hate everything medical, especially anything that is going to leave me minus an organ and might have complications that I'm not ready to live with. I've read many of the threads about the surgery and how people are very satisfied, etc. I just don't know if i want to do it. A little out of fear, and a little out of I don't want to be bothered with something like that.

I am having a hard time making the decision. I'm almost healthy right now and may be able to have the surgery in one step, which is a plus. I've also never had a Doctor who as capable, and prescribed anything other than Asacol and ridiculous dietary changes. I've also never tried to watch my diet closely while in remission. I had planned on seeing how this remission goes with the 6mp and Pentasa, get my body as healthy as I can, and if I flare in the next 3 months (my typical remission length), get well again and have the surgery. I just want to see how long I can stay in remission with a good Doctor, new medication, and watching diet more strictly than before.

I'm really not sure what to do. Suggestions and advice would be greatly appreciated.

IMO, you should read some of the posts on the ostomies forum where post surgical life is not all rosy.
I don't know your age but I'm assuming you're young.
It is also my opinion that you should try dietary restrictions and LDN that has no dangerous side effects before taking an irreversible step (surgery).
Why don't you try watching your diet while in remission? Maybe that's the reason the remission doesn't last.
Many would advise eliminating lactose, gluten and other foods that cause YOU issues at least until your colon has a chance to heal.

I suggest you read InSoFla's post about her regimen, the 11th post under the UC Resources tab.
https://www.healingwell.com/community/default.aspx?f=38&m=1666318
I adopted some of her suggestions and continued taking generic Colazal and supplements you will see in my signature. Have also used transdermal LDN.
My GI suggested surgery 13 months ago. I refused and am now very much improved.
My doctor is no longer pushing for surgery.
He mentioned that one of his patients who had a colectomy was in the hospital for 25 days (first surgery).

IMO, surgery is the last resort.

Sorry you are faced with the surgery dilemma but I will say this: if you are going to do it it's a million times easier to recoup from if you are in a healthy state instead of being on death's door.

I had j pouch surgery 2.5 years ago and my life has been restored to the way it was pre-UC. The surgeries are tough and it sucks big time when you are in the thick of it but its so worth it in the end. I would do it over again in a heartbeat.

I felt the same way you do....I just did NOT want to do it. But I got so bad that I didn't have any options left. I wish I had done it sooner before I got so sick. I would have had an easier recovery.

Good luck with your decsion....I know all too well how hard it is.

"I had j pouch surgery 2.5 years ago and my life has been restored to the way it was pre-UC"


not trying to be a dick - but your life before you got sick is exactly like your life now ? so food, bowel movements, energy level, overall health ? all the same ?

Susan451 said...
I'm curious why you are on Pentasa and not Asacol. Did the Asacol not work? I thought that the Pentasa is typically used for small and large intestinal inflammation. Just wondering.

That's what they put me on while in the hospital and that's what I've been taking. I've also read that too about the pentasa and was curious. Something is working. I went from lost 55 lbs, unable to eat, hospitalized, to well in three weeks time. My new Doctor is very awesome, and it's what she prescribed. I don't know. I will certainly ask next visit, since I've been wondering about the same thing.

I can't say for sure if the Asacol worked or not, but while taking the Asacol I was flaring every three months. While not on anything, I was flaring once a year. So either, I was having a bad reaction to the Asacol, or my disease was getting worse. Who knows. I blamed the Asacol, but I'm no Doctor.

Post Edited (tommy tutone) : 12/21/2012 7:06:20 PM (GMT-7)

tommy tutone

My assumption that you are young is no reflection on grammar, etc. You are, in fact, younger than my son who is 49.
From my perspective, nearly everyone who posts on this forum is "young" which is why I'm sad to see them ingest drugs with possible horrible side effects.

Just meant that you have many years to possibly regret a bad decision to have surgery before it's really necessary.

I, too, love food (pasta, pizza, ice cream, etc.) but when it came down to possible surgery, I sucked it up and went lactose and gluten-free. The fear of a bad surgical outcome (and possibly spending my remaining years battling complications) won over my love of food.

Whatever your decision, I wish you and your dad the best. ;-)