Ulcerative Colitis - Surgery?

I am sorry if this has been covered before, I am not used to non VBbulletin forums so I don't know if I used the search correctly.

My girlfriend is in a really bad flare. She has had a few treatments of Remicade so far, but nothing that is working. She is thinking of having her colon removed and I am, to say the least, nervous that this would cause her to have more problems than she already has. I am going to stand by her no matter what she chooses to do, but I am starting to get upset about it myself and so I came to the internet in search of answers.

In all honesty, I think it would be great for her to have the surgery if it really is going to help. She is in a constant pain and when we go away from home / school, its can hold her back at times. Sometimes just being away from her comfort zone will also prevent a spasm for a few hours (concert, movies, etc), but when she is in her comfort zone (home, dorm, my house, etc) its complete hell for her, constant pain, spasms and runs to the bathroom.

Has anybody on these forums had experience with the surgery to cure UC. Do you have a bag or did they put an internal pouch inside of you? How does that work / feel?


Please help me support her, its so painful to watch the one I love go through this.

i had surgery about 2 and half years ago, best thing i ever did!!! If i had it to do over again i would have had that stupid colon out the day i first saw blood. I suffered for 8 years before saying, thats it i am beating this disease and literally, throwing this colon out!
I have a perm ileo (a bag) and it doesnt keep me from doing anything or going anywhere or eating anything.
Its really rather convenient, lol.
I am prosurgery,big time. WHen my son was about a year old, he started having blood and mucus in his poop. And i told my husband, if he has UC that colon is coming OUT we arent pumping him full of meds for years and years. And my husband agreed.

To me the bottom line is, she shouldnt have to suffer when there is a cure.
Good luck to her and to you! and good for you being such a caring and good person to take time to look around for help liek this.

summerstorm said...
i had surgery about 2 and half years ago, best thing i ever did!!! If i had it to do over again i would have had that stupid colon out the day i first saw blood. I suffered for 8 years before saying, thats it i am beating this disease and literally, throwing this colon out!
I have a perm ileo (a bag) and it doesnt keep me from doing anything or going anywhere or eating anything.
Its really rather convenient, lol.
I am prosurgery,big time. WHen my son was about a year old, he started having blood and mucus in his poop. And i told my husband, if he has UC that colon is coming OUT we arent pumping him full of meds for years and years. And my husband agreed.

To me the bottom line is, she shouldnt have to suffer when there is a cure.
Good luck to her and to you! and good for you being such a caring and good person to take time to look around for help liek this.

I agree. Surgery is better than being pumped of meds for years and years.

I would have voted, but I've been able to achieve remission using alternative, healthy means.

Pennyione-I am sorry i didnt make that very clear. My son didnt end up having UC, he was just having some problems due to his sinuses and too many dairy products upsetting his stomach and making him have a lot of loose stool, which aggravated it and caused the blood and mucus. That lasted for about 6 weeks though. And as a parent,i of course thought the worse,lol.
BUT if he had had UC, i would have had his colon removed, i probably would have had his done as the first step of a jpouch though, to let him make that decision when he was older.
I have put alot of thought into that, how very odd of me, lol.

suebear said...
I opted for jpouch (internal) surgery 8 years ago. The best decision I ever made. My life is predictable and I can do what I please without the worry of knowing where bathrooms are or taking medication. I recommend your girlfriend get a surgical consult and get educated. Although surgery is a cure from UC it doesn't come without sacrifices. All types of UC surgeries have pros and cons and it's best she know what the options are in and pick the one she can live with. You can read more about the various choices (jpouch, kpouch, and perm ostomy) at www.j-pouch.org

Sue

Was the recovery painful? How was the second surgery?

If you had to speak directly to her, what would you say about it if she was nervous about life afterwards?

pennyisone-i just posted this in another thread, and thought it may help you also.
Before surgery i made a pro and con list, i had 3 cons, and 2 pages of pros. I kept that list with me and looked at it all the time right up until the day before surgery. And it helped me remember why i was having surgery and that i was makign the right decision.
So yall might try that.

hey if you like biology you may enjoy Elaine Gotschalls book "Breaking the Viscious Cyle"
(manipulating food so the body goes into remission) She was a Biochemist I think and it just makes sense. i am doing the diet - almost 2 weeks into it - 2 weeks ago i almost begged to have it removed. Today i can not tell you what 2 weeks of changing my diet has done. Good luck. She is so lucky to have support.

PennyIsOne said...
Thank you so much!

We're not jumping right to surgery just yet. I just wanted to learn everything there is to know about it before so that if that has to happen I could be the most supportive that I can be.

I have another concern, I am a very biology minded person (always do well in my bio classes, it just comes naturally to me) so this concern makes no sense to me but I have heard it and I want some advice. I have heard that colon removal can impact your fertility, and her and I have been discussing how many children we want to have after we get married. Has anybody here had the surgery and then got pregnant afterward.

I am scared of that, too. I have one child, so I feel like I can go ahead with the surgery and be at least ok if that ended up happening to me, but I do want another child

I am trying to think about everything because I know how much it would hurt her to find out she couldn't get pregnant.

Kelsie said...
In response to your fertility question. I asked at a CCFA conference, and the dr. said that a j-pouch can decrease a woman's fertility by 80%, but just having the colon removed and doing an ostomy, it didn't appear to affect fertility. An option to try to prevent infertility would be to do a temporary ostomy until after having children and then doing the j-pouch. The reason for the infertility was due to scar tissue/trauma preventing the eggs getting to the uterus, so I guess there would also be in vitro as an option.

Good thing to think about!

Oh, I did not know that. Thank you for sharing. That may be what I do then...

Sorry I lost this thread - I'm the one doing SCD, I've tried it before and went into remission but I found a few Tricks that help. The first week or so I also ommited all fruit and honey and the yogurt but did the probiotics (lacto acidipholus only) I think it stopped the D really fast. I wish you lived by me i would totally help and cook. I've helped two neighbors achieve remission - one with Crohns and one with celiac. Good luck! (The difference is they had the willpower and i didn't but I do now!)