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sad ):

Sun, December 11, 2011 9:42 AM

My UC battle has been a roller coaster. I got diagnosed when i was 13 and got a colonoscopy and the doctor said it was definatley UC. I was relieved because that was curable. So I opted for medicine before getting the surgery to have a temporary ileostomy. I tried the steriods , the TAC , and even the remicade and nothing worked. Throughout that time I was coming in and out of the hospital , going to the bathroom about 7/10 times a day and slowly getting weaker. I finally got the 3 step surgery , and felt great. I had the first surgery in feb. the second in july and the third in Nov. Finally free of UC ... But soon after, about the beginning of the new year I started to form fistulas , tracks inside of your pouch that leaked almost constantly. I got C-tons in April and they somewhat helped but i gradually started losing weight & blood. I was exahausted all the time and could barely walk. I got a blood test on day and they called saying my blood count was at 13 , a healthy number would be around 30. The doctors even thought it was a mistake but I knew it wasnt. I got admitted into the hospital for 3 months treating my horrendous rash , due to the fistulas , and the fistulas themselves. The rash and fistulas somewhat healed but the doctors wanted me to revert back to the ileostomy AGAIN. I was devastated but knew it would be the right desicion. I got the ilestomy yet again but the fistulas were still there. I tried different surgerys and went to different doctors to get some opinions but nothing helped. I just got the news about a month ago that I have to have the ilestomy bag forever. I am getting the surgery in early january. ):

juliiiaann
Joined Dec 10, 2011

Wed, January 11, 2012 3:46 PM

I read your post and just wanted to say how sorry i am for you,my daughter now 12 has UC first of all we were told there is no cure(i know there isnt but didnt at the time) and was so sad, i thought we could take some meds and be fine but its been a battle she is now on remicade and it seems to be working but she has been developing some side affects so not sure how long we can keep her on the remicade I really dont want her to have surgery expecially after hearing your story. once again im so sorry you have to go threw this! thanks for sharing

lisaw
Joined Jul 6, 2010

Sat, December 24, 2011 10:56 PM

Hey there,

I had read your post and wanted to just say hi. First and foremost you seem to have a outstanding attitude through all of the UC issues you have tackled. I have had Crohn's for about 24 years. I was first diagnosed when I was 21 in 1987. After a year of knife stabbing stomach pain, they found it was Crohns and had a big operation. I was fine until 2003, I started getting fistulas like crazy also. This time it was all near the rectal area, I had the 3 c-tons in at one time so get the fistulas to drain, yuk!. I was on Remicade for about 3 years and Imuran. By 2007, I had about 7 operations by then and all the medications stopped working. I was a police officer at the time to and needed to go on retirement/disability. In 2009, I got a partial coloectomy with a permanent ostomy, my rectum and anus were removed. I am playing in a ice hockey league now and I don't even notice the bag at all! You seem to be very motivated about getting the UC under control. I was a am the same way, I have always kept a good sense of humor about everything, and I was really motivated and ramped up to get the ostomy. Keep that drive and motivation you have. For me, I look back now on those last 8 years and am beyond happy I got the ostomy. That's great you have made a decision you are comfortable with, I know how tough that must have been for you. Let me know how things are going for you when you can.

Go get 'em! and think about all the great things that are ahead for you!,

Andrew

hockey rocks
Joined Aug 5, 2009

Tue, December 13, 2011 4:21 PM

Reply posted for IndeaSkye35.

Thank you so much. I really appriciate it.

I have asked and made sure I went through everything and they really think this is the best for me. The fistulas are just so bad right now I cant even go to school , I have a tutor. Everyday life is just so hard. Right now I think this isnt the worse thing that could happen there are so many people worse off then me. So im just greatful that this can be fixed.

juliiiaann
Joined Dec 10, 2011

Sun, December 11, 2011 11:54 PM

Reply posted for juliiiaann.

Sorry to hear about that. Ive had Crohns for 14 years now.

Ive had to have the bag 3 times now. Once, for the colon rupture. The second time, I had 3 fistulas. The third, I had 6 inches of preferated small intestines that needed to be removed post haste. Its temporary and Im completely symptom free but now Im waiting for a decent GI to go to that I can trust and that is hard.

I had a new experimental surgery for my fistulas by a doctor. Nothing else worked for me either. It took several different doctors to perform this surgery from the GI, the plastic surgeon and gyno. They had to cut me from top to bottom, literally, and then take a large section of inner thigh muscle and graph it into where the fistulas were. I had to stay on the bag and then go in for a colonoscopy 3 months later and it worked! No more fistulas. So make extra sure that the doctors have tried EVERYthing before going permanent. You never know. Ask them about this procedure. If it works like it did with mine, you wont have to have a permanent. Youll just have to endure 3 more months of the bag, possibly more depending on the severity of your fitulas and where they are. Mine were the embarrassing colovaginal fistulas.

I hope this info helps.

God Bless.