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I have some questions about surgery. I am VERY interested in having surgery. I have had UC for 12 years and this same flare-up for 2 1/2 years. We've tried immunosupressors, the maxium dosage of 5 ASA drugs, steriods, suppositories, enemas..... everything and nothing has helped. Right now my husband and I are stationed in Europe and the doctor here won't even entertain the thought of it, but the docs on base and back in the states think that I qualify for it, but I have to wait until I get back to the states. What should I do and how will the surgery effect my life as a mom of 2 small boys?

 Reply posted for Laur.

I did the 6MP thing last summer. OMG, I don't think I ever felt that bad before. I could barely manage to take care of myself. It was the worst, then to top that off, I was beyond moody. They want me to try methotrexate if my new rounds of medicine doesn't work. I'm now on Colazal, cort enemas, canasa and vitamins. Since I stopped dairy products, I don't have as many BM's  but I'm still trying to get this flare under control. I'm glad that the 6MP is working for you!!!

 Reply posted for kevin.

Kevin,

Thank you for your posting about your surgery.

I have had UC since 1990 and am well maintained on 6MP right now but I think each flare-up is The BIG one! so I try to talk to people about surgery.

You make it sound almost easy but can you tell me about any of the drawbacks? 

And of course, the cost of it, even though I do have health insurance. 

I like in CT and would want the best person available to do it, and not on an emergency basis, if possible.  I do try to broach the subject with my doctor but he has invested so much time in me, I feel like I am worrying too much.  I want to make the most rational decision possible.

Thank you for your reply.  And I am glad you're doing well. 

 Reply posted for tarheelmama.

Hello tarheem...

Have you asked your doctor about 6MP?  I was using the Rowasa and then was put on 6-MP and it has worked well, or at least has bought me some time.  Hope you can discuss with your doctor.

Let me know, ok?

thanks.  Laur 

 Reply posted for kevin.

Kevin, I was diagnosed with Ulcerative Colitis in March of 2000. I have had Colonoscopy exams every year or two since. I was put on Sulfasalizine and it worked fairly well for about 3-4 year, then my medication was changed to Colozal, then Imuran was added. I have tried Steroid and Rowasa enemas with little improvement. I am presently taking Colozal, Imuran and Remicade every 8 weeks. I still cannot get into remission. I have Heartburn about 12-16 hours/day and my GI doctor is recommending removal of my Colon and retaining the Rectom with a pouch. I will be consulting with a Surgeon soon and I would like to know what questions I should ask. I am not looking forward to surgery, but the side effects of my present medication are killing me, (respritory infection, heartburn and urinary infection). Any information will be appreciated.

Thanks, Roy

 Reply posted for whytwolf.

wow!  I'm glad that everything turned out ok for you. I had an emergency appointment with my doc last night and he told me that my UC is spreading. He said that he is going to change my medicines and if that doesn't work he wants to try Imuran or Methotrexate. If that doesn't work then he wants me to have surgery. I almost fell over when he said that because earlier he said that he wouldn't think about it. Now I've just got to get used to these new meds so... here's to prayers and crossing fingers!!!

 Reply posted for tarheelmama.

I found that there is a reluctance in the medical community to do surgery under all but the most extreme circumstances.  I had my first surgery in 2000 and only after getting a second opinion because my doc wouldn't even consider it.  Had I waited I would be dead because of an abcese that had developed along with a stricture. The surgeon told me the abcese could have ruptured at anytime.

My second surgery was 8/22/08 and the rest of my colon (10in) was removed because 6 inches of it was strictured.  I have an temporary illeostomy which we are planning to reverse after the first of the year.

To me the surgery was worth it because there were no other signs detected elsewhere in my system and am looking forward to feeling better.

I also agree that you should only have it done by a colon-rectal specialist and not a general surgeon becuase there are so many variables to be considered with Crohn's or UC.

If your doctor won't consider surgery and you feel it is the only option left, be your own advocate and seek a second opinion and make your feelings known.

Brian

 Reply posted for kevin.

I've been going to the bathroom at least 15 times a day and half the time it is just blood. I'm anemic, tired, can't concentrate, get dizzy and it is just insane that no one will listen to that... which is why I'm glad I finally got on here. They keep doing blood tests and I've been anemic for 3 years straight... as in at no time in 3 years has my blood been "normal". Is it just me or should I at least get to talk about surgery to my doc? I'm just glad that I am on here now and have other people to talk to who know what I am going through.

 Reply posted for tarheelmama.

I am on the sight fairly regularly and would be happy to answer any questions.  Good luck

Kevin

 Reply posted for kevin.

Thank you!!!! Now I have to see if the doctor will consider it at my next visit which is next week. Wish me lots of luck because I will surely need it!

 Reply posted for tarheelmama.

Degree of flares vary for each individual. I was toxic going to the restroom 30 times a day with pain and anemia. There was no choice. If your symptoms are intolerable the choice is made easily. I can tell you I am so much happier with after colectomy, resection of rectum, j pouch formation and loop ileostomy with reversal in 4 months. I am a busy surgeon and life is good. This radical surgery is not for everyone such as mild cases tolerating routine meds(not steroids). Long term steroids are tough on anyone with significant risk factors. The recovery for my firt surgery was about 4 weeks and for the second about 2 weeks. Please find a good colorectal surgeon who performs these procedures routinely.  I still have about 4-6 daily bowel movements and 3-5 nightly movements. There is no pain, urgency or incontinence to deal with.  Life is so much better for my wife and 2 young girls. I have never looked back after suffering for 2 years. Hope this is helpful, keep smiling,

Kevin