How sick were you at the time of surgery?

I was.. I was on every medicine and they didn't work. My last resort was a trial drug and that didn't work. I was losing a lot of weight and it was hard to work having to go to the bathroom all the time with a job that you have no access to bathrooms. The last few days before surgery I was pretty dehydrated from going to the bathroom so much but it worked out in the end.

I was going to the loo 20+ times a day (so much so I wasn't allowed to take any bowel prep before my surgery as I was just about spending my life on the loo anyway). I had dysplasia, had had several blood transfusions and none of the meds were doing any good. I'd also missed a heap of primary school due to illness and hospitalisations.

My quality of life sucked big time (and had for the past 5 years)! My ileostomy gave me my life back!

oh my... lets see MASSIVE flare for about 6weeks. GI doctor's office refused to get me an appointment with him or any of the other six doctors in his practice for three months, despite my husband and I both calling many times a day. All they did was prescribe proctofoam over the phone. Like that would do anything for a massive left sided colitis flare. Flare kept getting worse. I put myself on prednisone from my stockpile of UC drugs. Didn't help.

Was going 40-50times a day, bleeding horrendously, severely dehydrated, missed work for two weeks, hadn't ate for over five days when I finally went to the ER room. They admitted me with IV fluids, all sorts of IV other stuff, AND best of all IV steroids. After 5 days nothing improved. Well except I was only going 30x a day while on IV steroids and complete bowel rest!!! They said the flare had gotten so bad UC had spread to the entire colon and they were in fear of toxic megacolon. They did "emergency" surgery. I had lost about 25% of my body weight and I'm a petite person to begin with.

But with all of that. I came out of the first surgery feeling so much better. Did have to get readmitted within one day after coming home for a complete bowel obstruction, but that happens to lots of people.

this is an interesting topic for me right now- my quality of life is fine, I go to the bathroom about 4-7x per day, sleep thru the night fine, average 1-3 accidents per month. No pred in years, my weight is low but stable, my labs are decent. Yet, my GI wants me to have surgery- despite my meds (Asacol, Imuran Humira), I still have active inflammation- no dysplasia though. Soo... while I know going into surgery healthy is obviously the best choice, it's somewhat hard for me to do it while I feel ok. At this point I'm still undecided.... I'd love to hear from someone who had surgery while feeling good, but that doesn't appear to be the case...   UCWhat, I think the biggest worry for you right now is that your weight is low- I'd imagine you'd lose some weight during the whole sugery experience, & if you don't have much to spare, that's not good! But, being drained & tired shouldn't affect healing time too much.

UCwhat?, I had been flaring for almost a year when I had my surgery. I was just barely holding on with 15-20 totally unformed bloody BMs per day while on 35 mg pred, cipro, flagyl, 10 mg/kg remicade, hydrocort enemas, and methotrexate (5ASAs never helped me). For the two months before my surgery the only foods I was able to eat were boiled chicken, white bread/pasta/crackers, eggs, and broth. I went from 150 lb at the beginning of my flare to 110 lb the morning of surgery. I work a desk job but had been on disability for several months prior because there was simply no way I could get to work and even sit at a desk for a few hours. Most of my BMs were at night so I got maybe three hours of sleep per night, always broken up into 30-60 minute intervals.

Anyway, the point is... YES, people have had surgery when very sick. Remember, you won't jump out of bed and run a marathon or anything, but just getting your colon out will immediately improve your situation. There is such a thing as too ill for surgery but you are nowhere near it.

UCwhat? said...
Am I crazy to just want the surgery instead of the uncertainty of living with Ulcerative Colitis another day??

No you are not crazy at all. Do what I did when I came to realize I needed surgery. Make a list of the positive things that will come out of it. For example: You won't be sick anymore, no more accidents (if you are like I was I had one everyday), NO MORE DRUGS!, no more colonscopies (Yay!), no worry of colon cancer. And another great one is no more worrying when the next flare will rear its ugly head. I am so grateful for my j pouch. What a life saver this procedure has been.

I went about 6 years from diagnosis until surgery I had lost about 55 pounds, down to 150, I am 6'4". people who knew me were stopping me to ask if I had a serious illness. I was on a handful,Azulfidine, & prednisone, worked as night shift supervisor with a well trained crew and was able to be next to the commode and spent much of my time during the day in bathtub with handheld shower head with push button turn off. Moved TV in bathroom and learned to read without getting book wet. was on gallbladder diet Surgery was a great relief, especially enjoying eating again. Stool was firmer in pouch after surgery than before. I thank the Lord for an understanding and supporting wife. So yes I was sick with UC, but never had any other problems from flu, colds etc.

Wow, Steve! Finally, a kindred spirit-I'm not going to hijack this thread, but it's GOOD to find out I'm not alone in this. I feel fine... does anyone, EVER, get a colon removed as a preventive measure?? I've been told NO, by more than one doctor (including a surgeon)... So I run to the bathroom every AM, numerous times, & barely make it sometimes... then I'm good to go for the day! Is that enough for me to make such a major change in my life & body? Ugh...

And I forgot to say that you are going to feel so much better immediately after surgery. You are doing the best thing you can for yourself and you can look forward to putting the weight back on with time.

I was having remicade infusions all was well but I had polyps growing like crazy inside ...felt ok but wasn't really ...the uc had spread to my liver area ...

@B'dereh~ I hope that is the case, but am not so sure. Now that the C Diff has been discovered, both the GI and Surgeon have said to hold off on thinking about surgery until I see how I feel after this is cleared up. I don't think they will be willing to do it if they think I am "better" or more on my way to getting there. And with my insurance I can't go find another surgeon without referral from my GI. Just have to wait at this point...

@B'Dereh~ Yes, I understand what you are saying. And even if I get into remission for a while, when I do flare again I know it will be awful and I know pred doesn't help me. I'm due for my 3rd Remicade infusion in about 2 weeks, and it had been helping a bit before I got the C Diff. My GI is at the top at a teaching hospital, and I really like the surgeon there that he recommended me to. As of now I would like to stay working with them. I have considered getting a second opinion, but picking another doc is really just a crap shoot and it would take a month or more just to get in to see them. It's a lot to think about and hopefully I make all the right choices.