• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

So I finally decided to join a support group for Crohns: My Story

Hi everybody. My name is David. I'm 26 years old living in NY. I guess since this is where we tell our stories, I'll tell mine (Heads up. It's a bit of a read).

I've had Crohn's Disease for about 15 years now. I was diagnosed around the summer of 98 while I was in third grade. Before I was diagnosed, I remember my parents talking to me about how my teacher had contacted them telling them that I had been leaving class a lot to go to the bathroom. She said I didn't seem like the type of student that would try and skip class and thought it might be a more serious issue. My parents took her observations seriously and started taking me to doctors. Being a 9 year old boy, all this becomes sort of scary. Only sick people go to doctors.

First I was tested with barium and x rays. I remember the barium tasting like chalk and not wanting to drink it. On top of that, having to sit in the hospital all day waiting for it to go through your system is not exactly anybody's idea of fun, 9 or not. Unfortunately that test proved to be inconclusive and I was later scheduled to have a colonoscopy/endoscopy. I didn't even know what those words meant at the time and it freaked me out. I had never had surgery before nor been put under anesthesia and was frightened by this whole proposal. My parents coaxed me into it and after the procedure I was rewarded with a NY Mets Mike Piazza jersey, since he was my favorite player at the time. Oh, and I was also diagnosed with Crohns too.

After that began the long trek of being prescribed medicine. The list is long and my memory is hazy, but I have been on pretty much every medicine for Crohn's there is. 6mp, Asacol, Pentasa, Lialda, Remicade, and that devil of a drug, Prednisone. Jump ahead to today and I am on Humira, but more on that in a bit. Each medicine was only so effective. Since I was still young, the main concern was my appetite and growth, both of which were lacking. After about a year or so after the diagnosis, I was dangerously malnourished and underweight. I just could not eat. It got to the point where in 4th-5th grade, I had to use a feeding tube at night to give myself the nutrients I was neglecting during the day. I was a 10 year old kid, inserting a feeding tube down my nose every night because I couldn't eat. My bedroom looked more like a hospital room with that pump and IV stand in there.

After a while the feeding tube did work and I was gaining weight. Around the same time I also started to take Prednisone. It was a wonderful drug in that it got me to eat again and have an appetite, but other than that, it was horrible. My face swelled up and I had horrible mood swings. That was only briefly and was used more as needed as a last ditch effort type of drug.

For a while my condition stabilized and I eventually started using Remicade. Around the same time, I also started developing fistulas as well. They were painful monsters that eventually need draining and antibiotics to cure. Eventually I was pulled off Remicade due to possible side effects related to the drug. Time frame wise, this is sometime around 2003-04.

During that time too, my family moved from Long Island in NY to South FL due to family issues at that time (not my Crohn's). I was 15 and for the most part my condition was stable once again. I was eating for the most part and at a healthy weight. Everything seemed fine. Until Hurricane Katrina....

Ok, so I wasn't in Hurricane Katrina (technically I was cause it passed over South Florida, but it was only at Category 1 hurricane at the time), but I remember being in the hospital at the time and CNN was on the TV's and this was all they were talking about. That late summer of 2005, I was starting to experience intense back pain. Like really tight muscle stiffness. It was uncomfortable to sit or stand or lie down. I thought it was just a pulled muscle. I was in marching band at the time and played trombone and that does put some stress on your back standing at attention and holding a large instrument like that.

One morning I woke up and was screaming in pain. Horrible, agonizing pain. My parents ran into my room seeing me all contorted on my bed. They immediately got me in the car and drove me to the hospital. I was immediately given pain killers which soothed me. I was put in a CT scan machine and the results indicated that I had two abscesses on my intestines. One was almost 13 cm. I spent two weeks in the hospital having them drained. After that I was on antibiotics for another two weeks, which were administered intravenously through a picc line in my arm. Once again that damn IV pole was back in my bedroom.

Shortly after I recovered, my GI started talking about an experimental drug for Crohn's called Humira. He said he hasn't really prescribed it to anyone yet, but all the clinical tests were showing that it could be effective and safer to use than remicade. So my parents and I decided to give it a go. After a brief test to make sure I was clear of infections (turned out I had another, much much smaller abscess growing that had to be treated before starting Humira), I was prescribed the drug. The first few times were done at the hospital under observation then eventually I was allowed to self inject at home. This all occurred around late 2006 early 2007. I have been on Humira ever since. It is the only prescription drug I take for my Crohn's. I only take it once a week and haven't felt better. The only medical anomaly I've had since then was kidney stones around the time I started Humira. The Humira wasn't to blame; my diet was, along with the Crohn's assisting somewhat.

Anyways, ever since 2007 I've been in a very stable condition. I live a normal life for the most part. I'm a very picky eater, preferring to eat foods that I know how I'll respond to. I have a regular routine that minimizes how detrimental my Crohn's is, for example I'm usually really active in the morning running to the bathroom, so I try my best to either wake up early enough to get it out of my system or keep my morning clear altogether. On top of the Humira and my kidney stone prevention medicine, I take a load of supplements to fight anemia and fatigue, and work out fairly regularly. Currently I'm living back up in NY and doing what I've wanted to do ever since I was a little kid and that is be an airline pilot.

I've been through a lot as you can see. Hopefully you've read it all. If you did, thank you. I decided to join this group because I have felt lately that I want to connect with others that have/had similar problems as myself and try and help if I can and vice versa. I'm no expert and I'm not a doctor by any means, but I have lived with this disease for about 3/5ths of my life and do have a decent understanding of Crohn's. If there is anything I can do to help, please let me know. I'm new now, but my goal is to keep an active presence on this forum. Thank you.
Thanks for your story. Sounds like you've been through a lot and handled it well. What kind of diet do you find works best for you? Have you had any surgeries?
Thanks for the welcome. I have not had any surgeries. My Crohns was never that severe that it warranted that. The closest I've had to a surgery was when I had a drain installed for an abscess.

As far as my diet goes, I generally eat a little of everything. Staying away from really spicy and greasy foods. What I usually do is stick more with foods that I know how Ill react to, good or bad. I'm not the most adventurous eater because of this. But even sometimes that can backfire. A hamburger at one restaurant can bother me, but one at another place doesn't. On the surface my diet seems normal to people. Its when they are around me often and always see me eating the same things that they make a comment.

I have been trying to eat healthier, more organic foods too. I try and stay away from most processed foods. Not necessarily due to the Crohns but just to have better health overall. The kicker is that some veggies and fruits are either too fibrous or acidic and sometimes bother me, usually with multiple runs to the bathroom after eating them.
That's tough at that age. I've had a lot of success with Humira. It has really helped me a lot and makes feel "normal."
Same here with regard to not tolerating fiber in fruits and veggies. I'm now in the habit of eating the ones that are easiest to digest and then juicing the others. I juice every morning so I start day of with a serving of veggies and fruit.
I've found that fruits like oranges don't usually bother me but apples do. Lettuce usually bothers me whether it is dry or with dressing. It sucks cause I've recently been trying to eat healthier but its all the unhealthy foods I tolerate the best (most of the time).


If apple bother you, could it be the high fructose content?

Does the apple bother you in all forms eg raw, cooked and juiced?
Welcome David u have had a time of it those abscesses r just nasty I was suspected of having Crohn's in July when they found an abscess in the small bowel that was 6 monthes ago since then I've been in hospital twice with abscesses the last time it was so severe they had to operate they took out part of my small iliem bowel took the end off my colan and took a bit off my bladder cose the bowel was stuck to it al that was done on the 27th of nov my Crohn's is very severe and it stil active I'm coming right now but yeah Crohn's sux but I try not t let it get me down :)
That's good attitude to have. I'm sorry for what you've been for. Hopefully this will be a turning point for you. One of the biggest things I've learned about Crohn's is that a lot of it is mental. Actually, not just for Crohns, but a lot of things in life. Having the right attitude can make all the difference.
Thank u David the biggest worry I have is having to have time of work and the hard time I have finanicuialy the benifit people have been really good but it's a lot of going back and forth just to get medicals and documents when u feeling like excuse the pun shit lol but I'm feeling good atm going to the doc on mon to get clearance for work in excited about that but I worry a lot and I worry about the next time h go down hill but this year resolution is to nut worry just go with the flow :)
Depending on how you look at it, I was kind of fortunate that all this happened to me when I was still in school. School was my main responsibility. I was able to catch up on my work and classes eventually. It'd be much more difficult now with a job and trying to pay bills along with all the other Crohn's related issues. You have my admiration.

Try your best not to stress too much. I know this is easier said than done, but stressing usually makes things worse, especially when you're ill. Hopefully you have family and friends that can help as well to ease the burden.