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Living with crohns as a teen

Hey everyone, my name is Sumayya and I'm 15 years old, I was diagnosed with Crohn's disease a year with symptoms of dirreah, pains in abdomen, weight loss and loss of appetite. I was hospitalised as soon as I was unable to take the pain and the doctors did a colonoscopy and confirmed crohns in the large bowel, however a mri scan said that there wasn't Crohn's in the small bowel. After the diagnosis I went on a 6 week liquid diet- I managed it quite well and it did help with the pain and I put on weight! After the diet ended I began taking the immunosuppressant medicine; azathioprine. After that I was ok and managing the disease well with regular appointments at the hospital till July 2015. This is when I began getting the same symptoms from time to time therefore another colonoscopy was performed and again the Crohn's was very active. This time the doctors decided to try another immunosuppressant; inflixamap. Things went downhill after this. In September I began having worse pain and was in and out of hospital for 1 week, I had 3 Ultra sound scans which told me that the bowel was very inflamed and infected. I was then sent home with strong pain killers and a strict diet however just a week later I was in hospital again, this time a CT scan was does which made it clear that I needed an operation. The next day I had an illiostemy and a stoma taken out. After the operation I was put into Intesive Care Unit for 3 days. Once I moved to the ward I was ok but still in pain but it was different to the Crohn's pain I used to get so we assumed it was the pain of the operation. When I saw my stoma for the first time I was absolutely terrified but after all the support from friends, family and stoma care nurse I got used to it and hoped to have a reverse operation on the future. A few days after the operation it was decided to begin feeds by drinking modulen however it didn't go well and I began vomiting out bile so I was sent for a x-Ray that said my bowel contained many dialated loops and my tummy was very swollen. So my bowel was left to rest for 5 days. Then I started feeling hungry so the doctors agreed to begin feeding me with light foods I was ok but was getting really bad stomach cramps and unfortunately after a week I bagan vomiting bile again. Another x-Ray was taken showing more dialated loops so my abdomen was made to rest for about a week however the pain got worse so I was sent for a special x-Ray called a contrast that showed an obstruction and next thing I know 4 weeks after my first operation I'm having another one to clear the obstruction. During the second operation I lost a lot of blood so was again in intensive care unit for 3 days. After I was moved on to a normal ward I was given another blood transfusion. After the second operation the pain had totally disappeared and I felt so much better however feeding wasn't a good option as the Crohn's in my small bowel had flared up and was seen as active during the second operation. Luckily the same scar was used the second time so I only have one scar. It was decided I would be on TPN- a feeding system through a line or catheter- for about 6 months. At this moment I'm very well and In no pain however im not allowed to eat anything just sips of water. I'm getting my energy back and putting on weight so I'm in a good condition. xxx
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Staff member
Hello Sumayya and welcome to the forum! :D

I'm so sorry to hear that you have had to go through so much. I'm glad that things seem to be moving in the right direction for you now though. :)

We have a section for teens if you're interested in getting to know other teens on the forum. We also have a section for people who have a stoma and a section for TPN as well if you're interested in checking them out.


I'm glad you found the forum and look forward to talking to you more. :)