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My daughter has had ulceraltive colitis for 6 years now. She has been on all the meds,6mp,steroids,remicade,humira,asicol. Now the Dr's are putting her on intercort and she is taking a steriod called colocort. So total she is going to be on 4 medications. The Dr told me at her last visit that maybe i should think about surgery. I am so scared for her.She was ready for surgery about 3 years ago. She had been on steroids for so long that she quit growing. so she has been bad before. But that is when they came out with remicade. It worked for about 2 years and now she has built up antibodies to it. She is currently taking humira, and it is not working fully. She has never been in remission. I am so scared when they said surgery. I need to talk to someone that has been there, and around her age. I am so worried about the future for her and her risk for cancer at the age of 15. Is it good to wait or go ahead and have surgery. How will she be after surgery. Will she have complations? If anyone can help me i would be so grateful.

 Reply posted for Sallymona.

Thank you so much for telling me your story of your daughter. I hope she feels better enough to go to college. I just do not know if my daughter is at the point for surgery. She has been so bad before in her flair ups. Is it really time for her to have the surgery. There has to be more meds out there. I just wish i was not so scared for her. Is it worth it in the long run?

 Reply posted for Mindy CS.

My daughter was a freshman in high school when we found out she was having problems.They could not decipher at first if it was crohns or UC. She had been thru several different medicines to no avail. In her junior year of HS we all decided it was time for surgery.(At surgery time the culture was sent  out to determine  if it was Crohn's or Colitis. She has UC). She had missed so much of school. She had her surgery the week of Thanksgiving and then had her take down the last week of January. Her main symptom of the urgency to vacate was gone and she could then attend school and  catch up  to graduate with her class. Thus we are all glad she did the surgery.

Not to say, There have been some ups and downs. She has had recurrent bouts with pouchitis and other cramping/tummy problems.  We cannot seem to find the right medicines to help with these symptoms. She also has leaking at night which  has not been controlled either. She has struggled with these issues enough to deter her college studies on & off. Stressful issues are a contributing factor, certainly. She does see a counselor which has helped a lot.
I am so glad to hear the other young lady's story and how well she is doing. For the most part ,  I believe surgery patients benefit greatly from having the surgery. You should not bne afraid. We had the best care at the facility she was at in the pediatrics ward. It is a whole different story when the have to have the surgery in the general hospital vs. the pediatrics. so I would recommend it now!

 Reply posted for Mindy CS.

I plan on having my take down surgery the second surgery in 2 months if all goes as planned. I remember telling my ostomy nurse in the hospital that I was not sure if it was the meds talking or what but I told her I felt 100% better normal. I too hated having colitis. I have been wearing the bag for one month and it really is not a big deal as long as you prepare yourself for it. I am not going to lie there are days I get frustrated with it but I am so thankful I am cured I have never felt better in my life as far as the colitis goes. I have been having issuse with not wanting to eat the last week or so not sure why but other then that I am doing well. I would say getting this surgery was the best thing that has ever happened to me I feel normal again like I once did before any symptoms occured. I think even if I were stuck with the bag my quality of life would be better then before surgery. I was so suprised how quickly all the symptoms of colitis just vanished!!!! It was a total relief my miracle!! I would recomend the surgery for your daughter it really is worth it...

 Reply posted for trackstar7.

Thank you so much for writting to me. I started crying after i read that you felt 100% better. Do you have any other complations from surgery? Will you get the bag removed? Merinda would only have the bag just long enough for her surgery to heal. Then she would go through another surgery.   She tells me that she hates having colitis. I am justed so scared for her to have the surgery. I worry about the increase chances of her having cancer too.I know i need to do what is best for her. But what if this does not work, and she still has problems.  How are you feeling today?

 Reply posted for Mindy CS.

I can completely understand what your daughter is going through although I am 10 years older then she is. I have had ulcerative colitis for about 5 years now. I was put on just about every medication until they just stopped working. So my last resort was surgery I had prepared myself for it for about 8 months before I had the actually surgery. I had my colon and rectum removed on August 19th 2009 one month ago and I will tell you I feel 100 times better symptom wise. I no longer have arthritis which has been the best relief for me. I haven't had any problems with my bowel movements or blood or any of the syptoms for that matter. I am 25 years old I have had so many problems finishing school I have had to drop class after class just because of all the bowel problems I have had. I would really recomend the surgery for your daughter if the meds are not working she is suffering more then you know but, I would recomend doing research on the surgery before going threw with it so your daughter is prepared for what to expect after surgery. I feel that talking to people I know that had the surgery really helped prepare me for the surgery so when I woke up from surgery I knew that there was a bag on my abdoman and I took it really well. I was mentally prepared for it and I believe it really helped me through the transittion.