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I am 18 years old and was diagnosed with mod/severe UC about a year ago.  My dad also had UC but had to have an emergency J-Pouch surgery as he was very ill.  He had a strong history of medication not working.  Due to the fact that my disease was so severe at diagnosis, I was immediately placed on Imuran because my GI doctor did not think that any other medications would help.  I have been on Prednisone 5 separate times since I was diagnosed.  I was able to achieve remission for a few weeks, but spiraled into a bad flare and was hospitalized for 8 days.  Since I was discharged, I have not been able to achieve any form of remission.  My body is no longer responding to Prednisone and it doesn't seem that my Remicade infusions have done anything for me. I have tried enemas, different diets, nothing seems to work.  I am only 5'1 and have gone from 113 lbs to 90 lbs.  Bland diets are not helping and I feel as though I've run out of options.  My GI set up a surgical consultation because she believes that may be my only option.  Currently I am going to the bathroom 11-15 times a day, with blood, mucus and unbearable nausea/pain.  I know there are many other people that are suffering worse than I am which is why I am reserved about getting surgery.  With a family history of failed UC treatment and no sign of remission, I feel this may be my only option though.  Any suggestions or advice?

 Reply posted for lifeofpassion.

I was 19 when I was diagnosed with UC moderate too severe! & so was my father he was actually diagnosed the SAME exact year and month ! crazy right! Maintainence pills, infusions, & Steroids no longer worked for me. I decided surgery was my best option / ONLY option my body was in the worst shape I must say it changed my life it saved me in every way possible!!!!! I'm so happy I did the surgery it was the best thing I could've done for myself and my health . I eat anything I want I no longer use th restroom 16x a day. My body is healing inside :) I do normal activities, school and work. I will be getting a reversal next month from the bag I know it'll be just that much better!!!! 😊 Best wishes & good health

Hello! I wanted to pass on a couple of thoughts that could be helpful when making this decision. My doctor knew early on that I would be one of the 20%+ UC patients that would need a surgical solution. They have seen this many times and they have a pretty good idea where you are heading. But you shouldn't go into surgery until YOU are convinced it is time. It would be difficult sitting around thinking about the things you didn't try. That said, I tried everything. The doctor told me I would know when it was time. Nothing worked and I was living on prednisone. I had the 3 step surgery and now I have a J pouch. I am a 61 year old active male and I'm 2-1/2 years post surgery. My life is great. Different but every bit as good as it was. I go to the bathroom about six times a day. I was doing four before I got sick. If you are otherwise healthy, don't fear the change.  I won't say it was a breeze but if you have any fortitude, it's not that tall of a mountain to climb. (PS - I was on 5-10 mg/day prednisone for 3 years. It did more damage than the disease.)

Not sure if you are still trying to decide. Everyone's situation is individual, but I thought I would chime in with a story of the long term view. I had IPAA surgery when I was 20. That was 15 years ago. Yes, the surgeries are difficult. I tool a semester off of college to deal with mine. In the end (or at least at this point) I am glad I did the surgery and knowing what I do now, I would have opted for it sooner. As I look back over the course of the disease I remember the times that I was taking medication, dealing with the side effects as well as incomplete symptom relief of UC.These stick out in my mind as much more painful and dignity robbing than the totality of the surgeries and their side effects. If it happens to be applicable, I also have had a normal pregnancy resulting in a healthy child. I am now realizing that UC can have extraintestinal manifestations that remain a possibility after colectomy, but I assume these would have developed weather of not I had had the surgery. Best of luck.

 Reply posted for lifeofpassion.

Surgery literally saved my life. It was the best decision I ever made.

 Reply posted for cerasmile.

I am 27. I was diagnosed in 2006. I recently had surgery and have a blog covering the day to day of recovery. It may help you. Check it out. mattee66.wordpress.com

 Reply posted for lifeofpassion.

I just had the colon removed, hard recovery but I had some complications. I'm having the J-Pouch when it's all said and done. I did all the same things you did but I began to throw up constantly. I could keep nothing down. My options were limited as my organs were beginning to shut down. I lost 50 pounds in 6 weeks, 65 by the time I had the surgery. Truthfully, the bag is no fun, I despise it and I'm having a hard time coming to terms with it. But, I'll have it for about a year, once the J-Pouch is completed, the bag is gone. No one will ever know you have no colon, your system will work as normal. It's called an Ileostomy Anal Pull Through or J-Pouch. I hope this helps and I wish you the best.

I posted a similar message as this a couple of months ago:

Four GI specialists strongly recommended that I have surgery to remove my entire colon due to moderate to severe UC with some low grade dysplasia that my GI doctor was unable to cut out during colonoscopy. I was leaning toward having surgery when I came across a small study found in PubMed that showed that the Chinese herb Qing Dai was a very successful treatment for UC. I bought one pound from 1st Chinese Herbs online for about $30 (1 pound lasts a year). I also bought from this company empty "00" capsules and a cheap capsule filling device. I take 1 capsule twice a day (about 2 gm/day). After taking the Qing Dai for a month or two my symptoms improved dramatically. I had another colonoscopy a few months later that showed little to no inflammation and the doctor was able to excise the area of dysplasia. The doctor is no longer talking about surgery and I haven't seen him in over six months. I've also stopped taking Lialda and daily steroid enemas. I do take Low Dose Naltrexone that I get from a doctor in San Francisco that I had a phone consultation with. However, the Naltrexone is only marginally helpful (I've tried stopping it four times, but my symptoms have increased slightly each time). The Qing Dai has been life changing for me. I still have 2-4 BMs a day, but I think that's probably due to scar tissue after eight years of UC symptoms. I'm basically very healthy again and no longer have severe inflammation or blood and mucus in my stool. And I avoided two or three major surgeries.