- Joined
- Nov 15, 2010
- Messages
- 9
I was 13 and had been experiencing loose stool for 2 months then on a vacation and after eating some bad chicken was throwing up all day for the remaining week of the vacation. I could not keep down anything I ate and I could barely move except to go from the bathroom to the couch . My mom took me to see a doctor and they sent me straight to the hospital to get IV fluids in me. I was fine for maybe half a day then the vommitting started again until about the time we were heading home.
When I got back home we went straight to my doctor's office. My doctor said to go back the next day if things hadn't improved but if i got a fever to go straight to emergency. Later that night I got a fever and went to the emergency room. They gave me more IV fluids and the doctor looked me over and saw I had what appeared to be large mosquito bites on my lower legs. I found out these are called erythema nodosum. The doctor said they were a huge indicator of IBD, matched with my other symptoms. She called the Children's hospital 3 hours away and got me sent there the next day.
I spent the next week as an inpatient getting all the tests to diagnose which IBD I had. My brother has Colitis so I was hoping for the same but I had Crohn's. They put me on Salofalk and prednisone then sent me home.
The Salofalk worked for about a year (on and off with prednisone) but then suddenly stopped working. I started to get nauseous but mostly lots of loose stool. The doctor suggested a stomach rest so I went to the hospital for a week for IV fluids.
The doctors decided to try Imuran because the Salofalk wasn't working. Less than a week after I had gotten home I got the rare side affect from Imuran, pancreatitis. I had to stop taking it immediately. I was then put on prednisone for the second time in a year and a half.
After long discussions about my options now I went on Methotrexate with prednisone. It worked really well for about half a year and then I started to be nauseous every day all day. I was eating very little and losing weight so I had a colonoscopy and endoscopy, a special enema, an MRI, and even an ultrasound to confirm without a doubt my bowel was becoming blocked by built up scar tissue.
I went in for surgery after having Crohn's for 3.5 years. They took out the affected areas of my large intestine (10 inches). Afterwards I fealt great. I fealt normal and was only taking Salofalk again and had just weaned off another dose of prednisone. Remission is usually supposed to last at least about a year after the surgery sometimes for the rest of your life. I had 3 months of remission before the next flare up. There was no more nausea so the surgery had worked in that aspect but I wasn't hungry, I was always tired, and I was loosing weight. I went back on prednisone and discussed with my family and doctors what options I had left.
I went with Humira which is what I am currently on. It hasn't stopped the symptoms and I have tried to go from once every two weeks to once every week with no real benefit and painful side affects. It is the best medication I have been on and I feel better than I have in a long time.
If anyone has any advice on options that worked for them in severe cases of Crohn's I would love to know what else is out there.
And if anyone wants to know about any of the procedures I have been through (the ultrasound is another option for a colonoscopy in some cases) or any of my experiences with medications feel free to ask.
I understand Crohn's is confusing and sometimes very depressing no matter where you are in the disease so if I can do anything to help anyone feel more at ease about medications or procedures or even just living with the disease I would be honoured. I am currently 19 years old and have had Crohn's for 5.5 years.
When I got back home we went straight to my doctor's office. My doctor said to go back the next day if things hadn't improved but if i got a fever to go straight to emergency. Later that night I got a fever and went to the emergency room. They gave me more IV fluids and the doctor looked me over and saw I had what appeared to be large mosquito bites on my lower legs. I found out these are called erythema nodosum. The doctor said they were a huge indicator of IBD, matched with my other symptoms. She called the Children's hospital 3 hours away and got me sent there the next day.
I spent the next week as an inpatient getting all the tests to diagnose which IBD I had. My brother has Colitis so I was hoping for the same but I had Crohn's. They put me on Salofalk and prednisone then sent me home.
The Salofalk worked for about a year (on and off with prednisone) but then suddenly stopped working. I started to get nauseous but mostly lots of loose stool. The doctor suggested a stomach rest so I went to the hospital for a week for IV fluids.
The doctors decided to try Imuran because the Salofalk wasn't working. Less than a week after I had gotten home I got the rare side affect from Imuran, pancreatitis. I had to stop taking it immediately. I was then put on prednisone for the second time in a year and a half.
After long discussions about my options now I went on Methotrexate with prednisone. It worked really well for about half a year and then I started to be nauseous every day all day. I was eating very little and losing weight so I had a colonoscopy and endoscopy, a special enema, an MRI, and even an ultrasound to confirm without a doubt my bowel was becoming blocked by built up scar tissue.
I went in for surgery after having Crohn's for 3.5 years. They took out the affected areas of my large intestine (10 inches). Afterwards I fealt great. I fealt normal and was only taking Salofalk again and had just weaned off another dose of prednisone. Remission is usually supposed to last at least about a year after the surgery sometimes for the rest of your life. I had 3 months of remission before the next flare up. There was no more nausea so the surgery had worked in that aspect but I wasn't hungry, I was always tired, and I was loosing weight. I went back on prednisone and discussed with my family and doctors what options I had left.
I went with Humira which is what I am currently on. It hasn't stopped the symptoms and I have tried to go from once every two weeks to once every week with no real benefit and painful side affects. It is the best medication I have been on and I feel better than I have in a long time.
If anyone has any advice on options that worked for them in severe cases of Crohn's I would love to know what else is out there.
And if anyone wants to know about any of the procedures I have been through (the ultrasound is another option for a colonoscopy in some cases) or any of my experiences with medications feel free to ask.
I understand Crohn's is confusing and sometimes very depressing no matter where you are in the disease so if I can do anything to help anyone feel more at ease about medications or procedures or even just living with the disease I would be honoured. I am currently 19 years old and have had Crohn's for 5.5 years.
Theres loads of members around your age here so please stick around and browse the forums and if you have any questions please don't hesitate to ask, nothing is TMI!!! 
