Community Forum

Hello,

I have had UC for over 15 years and I am now considering surgery.  I have been experiencing frequent moderate to severe flare ups for the last several years and have not experienced remission in almost two years.  I am on several medications that help me get through the day so that I can still do some of the things I enjoy and work part time but even with all of the medications I am still experiencing painful symptoms every day and the disease is definitely interfering with my life and my ability to do things that I would like to do.  My doctor is recommending surgery to remove my colon and if I have the surgery I would probably have to live with an ostomy bag for a while if not forever depending on how everything goes.  I would like to hear from people who have had the surgery and I would like to hear about your experiences, the positives and negatives, and your experiences with either a j-pouch or an ostomy bag and I would like to know how your lives have been impacted for better or worse.  Thank you so much to anyone who is willing to share, it is very scary to be thinking about all of this and it really helps to know that other people have been through it and can relate to what I am going through.  I look forward to hearing from you.  :-)

Thank you!

 Reply posted for sj885.

I am 5 weeks post op for a permanent ileostomy.  I could not do the j-pouch procedure due to several comorbidities with my health.  So far I have had far more better days than bad.  I won't sugar coat anything - the first week after surgery is really rough.  Yes, the ostomy bag is a life changer and very tough to get used to at first.  It is a little gross but depending on how bad your diarrhea is - no worse than cleaning an accident if you have them.  You dump the bag alot more than changing the whole thing - that's about every 3-4 days.  Dumping isn't too bad and there are things you can do to keep the odor down or gone.  There's lots of information out there and the hospitals should give you alot to help also.

 Reply posted for blorentz.

I am 31 years old and have had UC since I was 19.  In the beginning my flares were bad and I struggled with the decision to have surgery.  But then I started Remicade and everything got better.  Up until 8 months ago my UC was fairly well controlled on Remicade and I had a full life.  I'm a full time veterinarian, I'm planning my wedding for next May, and my favorite thing in the world is ride my horse, Limerick.  But 8 months ago I started a flare that beat Remicade, Humira, and just about every other drug on the market.  I was at work one day gasping for breath from anemia, exhaustion, dehydration, and everything else that goes along with horrible UC when I realized I was at my breaking point.  I couldn't work, I couldn't ride my horse... I couldn't live my life and I couldn't feel awful anymore.  I decided to have surgery.  Two weeks ago I traveled to the Cleveland Clinic in Ohio and had my first of the 3 surgeries.  I now have an ostomy bag which I will have for about 8 months and I won't lie- it's gross and it sucks (though keep in mind I'm not an expert with it yet).  I also may or may not have to postpone my wedding based on the timing of the final surgery.  But you know what?  I FINALLY FEEL BETTER!  I'm only 2 weeks post surgery, still weak and sore, and I can tell you beyond a shadow of a doubt that I already feel so much better than I have at any point in the last 8 months, and I improve with each passing day.  I'm even planning on getting back on my horse next week.  I don't know if this helps you make your decision, but I thought this story might be informative for you, especially being that I have good results so soon after my surgery.
Good luck, and feel free to contact me with any questions!

My son was diagnosed with UC in June of 2012.  His disease moved quite rapidly.  He tried steroids and later Remicade, but neither worked. He got progressively worse and worse instead of better.  He had the first surgery in November of 2012. At that point we had no choice though.  He had several blood transfusions, had lost almost 30 pounds, and had been in the hospital for almost a month.  Because he was so unhealthy, he had to have the surgery in three parts.  Part 1 was to remove the colon and give him an illeostomy.  Part 2 was to construct the J pouch.  Part 3 was to reverse the illeostomy.  He had the illeostomy for about 6 months.  The entire process was very difficult especially for a young person (he was 20).  He felt a great deal of relief from those horrible UC symptoms even after the first surgery though. They had been so bad it was truly such a relief for him.  

Now it has been a little over a year since the last surgery for the reversal of the illeostomy.  He has had some setbacks.  He has an abscess that they have opened up several times and won't go away.  He's also been in the hospital several times with blockages.  He has to go for testing to see why they are occurring later this week.  

So things are not perfect after surgery, but as I said before, he had no choice.  We did regret trying the Remicade because of the side effects and dangers we read about.  If we had known it wouldn't work for him at all, we would have skipped that step.  We do have a friend with Crohns that Remicade is working for.  We also have another friend who had the surgery about 12 years ago.  He had some problems with obstructions too, but is good now.  

I hope this helps.  I came here looking for people who might be having similar problems after the surgery and saw your post.  Good luck.  

 Reply posted for sj885.

I've had an ostomy bag for the past 3 years. I was diagnosed with colitis since I was 9 years old. I dealt with it for most of my life. However at the age of 24, I was diagnosed with a liver condition associated with colitis (Primary Sclerosing Cholangitis). I had a liver transplant and then required an ileostomy. It's actually really comfortable to have an ostomy. You don't have to worry about that horrid abdominal pain or an urgency to use the restroom. I'm still always on the lookout for the nearest bathroom and I have an emergency kit with me at all times in case it leaks, but I'm not that anxious and worried as I was with colitis. My main issue with the ostomy is gas! Unlike the colon, the small intestine doesn't hold back and can't be controlled. The noises it makes are extremely embarrassing. I'm currently studying to be an eye care professional and I'm constantly worried that it will let out gas. The smell is never an issue since the bag holds it in, but the sound is what worries me. Also, it's kind-of annoying to do the bag every other day or so. I still have my rectum left, so I am greatly considering the J-Pouch surgery after I graduate. 

Before doing an ileostomy, ask your doctor if you qualify for a fecal transplant. It sounds disgusting, but I've read 90-100% success rates in completely curing colitis. Think about that first :)

 Reply posted for sj885.

Hi there,
I don't have anything to share, because I am in the same boat. I was hoping to see that someone had responded with some experiences to share. It's such a HUGE step....but in my opinion, if it's diseased, it outta go. But I too would love to hear stories of how the surgery is working for others. 

Thank you for starting the post! Hopefully we'll hear from some people soon. Take care!

Bridget