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Surgery for UC
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Carol8850 posted:
I am looking at surgery for my UC. can anyone tell me how you managed the three surgerys and any complications that may have come up?
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hannahleigh89 responded:
Are you referring to total colectomy with ileostomy placement and then ileostomy reversal?
 
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Carol8850 replied to hannahleigh89's response:
They are taking out the colon, placing a bag, then reconstructing the rectum and the final surgery will be to attach everything to the small intestine. That is what i know at the moment.
 
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hannahleigh89 replied to Carol8850's response:
Carol, how long until your surgery?
 
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mrsbeans responded:
I have another colonoscopy in July and at that time will make my decision as to how I want to proceed. For many years I was treated for Crohn's and then when they decided I should have surgery they did some sort of special blood test and it came back that I actually have UC. That changed everything. Now my doctor said it is all or nothing. The thing that makes this decision so hard for me is that I have never had to have surgery for this and have only had 3 pretty bad flare-ups in the last 22 years. Right now I am doing great. But they are telling me (both my doctor and Mayo) that because of the amount of psuedo polyps that I have, my chances of getting colon cancer are very high. This is why I am being encouraged to have the surgery. Somehow I think this decision would be easier if I was suffering with alot of pain.
 
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miserable_sob replied to mrsbeans's response:
By all means stay away from surgery. I made the mistake of choosing it 25 years ago, now all I can do is regret it, because there's no turning back. If you're really worried about cancer, just get regular colonoscopies and other checkups to keep an eye on things. Believe me, after the 25 years of hell I've been through, I'd take my chances on living with your diseased colon.
 
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arbob5 replied to mrsbeans's response:
Great strides have been made in this type of surgery. I would listen to your physician and get all of the information you can. And do not be afraid to ask questions. I am sure all will work out well for you. I've had two hip replacement and one knee replacement in the last 9 years and I heard horror stories from some people who had them. It scared the bejeebers out of me, but I went ahead anyway and it was nothing like what some of them described. And the latest hip surgery last July took 45 minutes,and the advancements they made really surprised me.

So, again, listen to your doctor and don't be afraid to ask questions. I'm sure all will go well. God bless, and keep us up-to-date on how you're doing. We do care.
 
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Carol8850 replied to hannahleigh89's response:
sorry I did not answer sooner, I am just getting used to this web site. I have not scheduled my surgery yet. I see my surgeon the end of July or mid Aug to make my final decision. I would like to know if this will get me back to some kind of normal living. I have always been very active. I play golf and travel a lot. Right now it is hard to leave the house sometimes and I always go to stores I know where the restrooms are. any advice would be helpful
 
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hannahleigh89 replied to Carol8850's response:
It depends on your body. I know that's a cliche answer, but it's so true. And it depends on your determination. The longest I've gone without having a bowel movement since I had my surgery to reconnect my J-pouch to my anus and get rid of my ostomy was 17 hours. And that is a rare occurrence. It took trial and error of combining a bunch of different diarrhea medicine with some nerve medication and gas pills and spasm pills and it's just a nice little handful of pills that I take every 6 hours. But I can do things. When I was sick, prior to the surgery, I could not do things. I missed my last two years of high school, I was taking college classes exclusively online because there were some days that I was in too much pain to get out of bed, except for crawling to the bathroom. I had to stay so doped up on pain medicine that I didn't even feel safe driving. Those days are much fewer and far between now. And if you truly just have UC, you shouldn't have a lot of pain or issues after you heal from surgery, if you're willing to try. If you never get used to holding it and you never get your pouch used to that, you'll have to run to the bathroom a lot more frequently. I had my first surgery (removal of colon) in July of 2010, J-pouch constructed in October, and take-down/reversal/whatever you want to call it the following January. Since then. I've completed nursing school, including multiple 12 hour (or longer) shifts at a hospital on my feet. That's not saying that some nights, I had to take a couple bathroom breaks, but I made it through multiple shifts without even having to think about a bathroom.

It also takes controlling your eating though. I would eat very little on those days, and tried not to drink a lot either, which isn't really healthy but sometimes you just don't have time for a bathroom break.

So with the right medications and effort on your part, I would say there is no reason that you could not still be active and travel. I was afraid that I would never be able to enjoy eating at a restaurant again after my surgeries. My mom and I eat Red Lobster (usually) every 28 days when I have my IV treatments for Crohn's, and it's a 2 and a half hour drive home, and we don't usually have to stop for bathroom breaks. And that's even with eating a salad.

I'm just speaking from my experience, but my doctors remind me every time that I'm a strange one and my experience is not the usual one. I had UC and Crohn's, and I still have moderate to severe Crohn's in my small bowel. So my symptoms and my issues are probably not ones that you will have.

As far as complications from surgery goes- they perforated my bowel and I almost died of infection. But they got that all taken care of, and other than pain at my stoma site, I didn't really have any complications. My first stoma was amazing, but my second one (when they constructed the J-pouch, they take the end of your small intestine to construct it, so the second stoma comes out the middle and has extra holes and it's shaped funny sometimes) was very painful. I think the surgeon just got sloppy with mine though, and I don't think that's very common. You also have to watch for blood clots and respiratory issues with any abdominal surgery, but your hospital will be aware of that and should take precautions.

I hope this helps to answer your questions, and if you have any more, feel free to ask.
 
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Carol8850 replied to hannahleigh89's response:
Thank you for the information, it is very helpful. I don't have a lot of pain per say only when i have to have a bowel movement. so I guess I am not as bad as some people, thank God. I am not responding to any of the medications they have given me except the prednison and my doctor does not want me to stay on that one for a long time. It is hard sometimes to figure out if it will be better with the surgery or just suffer with it. But at my age 62 I don't want to suffer through my supposidly retirement years if I can avoid it. I want to be active as long as I can be for as long as I can. Again thanks for the information it will help me.
 
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miserable_sob replied to Carol8850's response:
Personally since the medications you're using now haven't changed much since I had ulcerative colitis, I have no faith at all in them. Why not experiment with alternative meds such as these http://www.mayoclinic.com/health/ulcerative-colitis/DS00598/DSECTION=alternative-medicine
 
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hannahleigh89 replied to Carol8850's response:
I think I might be getting some users confused with each other because there has been a lot of discussion on this topic lately. Can you clarify for me what your situation is? From reading your previous posts in this thread, I gather that you are having diarrhea with urgency and pain with bowel movements. Is this correct?

How long has it been since you were diagnosed with UC, and how many years did you have symptoms before your diagnosis?
Are the above mentioned symptoms the only reason you've sought treatment, and the reason your doctor is recommending this procedure?
What are some specific examples of how UC is affecting your life currently?
I'm just trying to get a better understanding of what's going on, which I should have done before offering my two cents.

Also, if you have any other questions, feel free to ask. My desktop computer has been acting squirrelly lately but I will be around as frequently as I can.
 
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Carol8850 replied to hannahleigh89's response:
I have been diagnosed with UC for about 5 years but the first 4 years it was only the lower part so I only had flare ups about once a year then it progressed into the upper part of my colon and I was running to the bathroom every hour on the hour it was hard to do anything. The docotor started me on Asacol and that didn't help a lot, so he tried several other drugs to get it under control or remission. One drug nearly did me in I had serious reactions to it. I am on prednizone and Humira and Dorsical now and the prednizone seems to be the only thing that helps. At least I can make it through the day and then I am up all night every 3 hrs in t he bathroom, hard to get any decent sleep. So I was refered to a surgeon because I can't seem to get any relief from medications.
 
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miserable_sob replied to Carol8850's response:
You're responding better to medication then than I was. I say that because when I used Prednisone, it was a complete failure. My doctor switched me to Cortisone injections after that. That drug was a complete nightmare. All it was good for was the worst side effects I've ever seen in my life.It did nothing at all to settle down my Colitis, and the most notable side effect was how puffy I became while on it. Below is a pic of how I felt.
 
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Carol8850 replied to arbob5's response:
Thank you for your response. I have also had two hip replacements my last was in Oct. 2012 so I am not afraid of surgery just want to get an idea of what I will have to deal with after each surgery. like pain, taking care of the bag, etc. just trying to get an idea of how to handle each step. I think that after 25 years the doctors must have made many changes to the way they handle the surgerys. I am sorry "Miserable_SOB" had had a bad time with the surgery. I am hoping it is not as bad today. Thanks for your input.


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