Hello all

I was diagnosed with Crohn's when I was in 6th grade (about 12 years old.) I was off and on a bunch of different medications but the most were Flagyl (Metronidazole) which is an intestinal antibiotic, and Azathioprine which is an immunosuppressant.

Since I was diagnosed at a young age my mother was bringing me to my doctors appointments and reminding me to take my pills, I think when it first started I was taking 10-11 pills a day, which for a kid who couldn't swallow pills initially was a pretty hefty amount. Anywhosal. I went through middle school and high school never really taking this disease seriously. I never denied that I had it I just kind of shook it off. Occasionally I would have a flare up but only rarely was it one that actually doubled me over in pain, so I figured, why swallow 70 pills a week when it only hurt really bad a few times a year. Unfortunately I am still in that mind set, I am now (almost) 24 I haven't been to my GI doctor in close to three years and haven't taken medication at all since then (and rarely before then either)

Some symptoms I have always delt with and have actually gotten used to.
Varying bowel movements. Depending on what I eat I will either go 2-3 days without having to go (and not even constipated) or have to go 3-4 times in one day. Obviously to consistency of those movements vary as well.
I would assume this is due to the scarring in my intestines but when ever I eat I can feel the pressure build up in the area where the crohn's is (terminal illeum) and I can feel it get really hard for a few seconds or minutes. This is pretty the only time it hurts.
Lastly,and probably the most annoying, ANYTIME I eat food my stomach gurgles. Never when I am hungry only when I have recently consumed something. Which normally wouldn't be a problem, it is actually entertaining 50% of the time but there are instances where I am in meetings and work or at a class in college where people are taking a test and everything is supposed to be quite and my stomach just goes off. It is embarrassing to say the least.

Having dealt with this disease for almost 12 years now I can say that I have gotten used to the pain involved and the aforementioned side-effects but I long to be normal again.

Before I stopped going to my doctor he was mentioning Remicade (spelling) and I am honestly a little afraid about it. First off because I have an older friend who has crohns and he is going through that treatment and not only do you have to do it every month but it is also $10k-$12k per session which is outrageous, but my doctor also told me that it can cause TB in younger males? So I feel like that isn't even an option. Take a treatment that could possibly give me a condition that will kill me or suffer through Crohns which will make my life hell until it also likely shortens my life expectancy. Horray for options? I know that this was years ago and treatment may have changed, but I don't know yet.

I finally set up an appointment to meet with him (2 months out) to discuss scheduling a colonoscopy to check in. Though I know this is nothing to ask for, I am kind of hoping that my crohns is bad enough to require a resection. I feel that that along with a healthy diet and a maintained medication ( hopefully with help from my fiancee) will help me deal with this problem. I know that a lot of people who get crohns eventually have to have a resection anyway and one of the last times I talked with my doctor he mentioned the surgery but also said that he would rather not do it because I was so young, and if I did it that young (17ish?) that I would likely have to do again, or maybe even a few more times in my lifetime.

I know this is a lot but I am really just trying to start actually understanding this condition and everything that comes with it because for the last 11 years I have just pushed it aside. Better late than never I guess. I look forward to any information or insights anyone can share and I will do my best to do the same when I experience what the medical field has to offer me. Thanks for reading all!

Welcome to HW :p

I'm kinda tired now, but I'll try to answer a few key points...

Firstly, don't feel guilty for not taking the disease seriously enough when younger. A teenager is not really going to grasp the long-term implications of Crohn's, because teenagers don't have the same sense of mortality and frailty as much older people do. Personally, I was 25 when I was diagnosed and I still made the same mistake of not taking Crohn's seriously for a few years. To be fair to me, I had very mild symptoms for this disease and absolutely no doctor attempted to explain it to me. But even so...

Secondly, Remicade doesn't cause TB. The situation is complicated and I don't have any handy references to hand, but Remicade - in combination with another immunesupressant med such as 6MP - has been known to cause a few cases of lymphoma in young males. The risk of a young male on Remicade + 6MP/Imuran getting lymphoma is still extremely low overall, but obviously if I was a parent of a teenage child I still wouldn't want to run it, even if it was just 1 in 1000, or whatever. (Not sure what the actual statistic is.)

Remicade is currently the most effective med for Crohn's, along with Humira. Taking it long-term is something of a trade-off: you are not likely to get TB or lymphoma, but the long-term side-effects are still a bit of a mystery. However, trade that against untreated Crohn's and it's almost a no-brainer. Not to scare you, but Crohn's can land you in hospital needing emergency surgery: that's the sort of damage it can wreak to your insides, unseen. On top of that, having Crohn's can also cause anaemia, vitamin deficiencies, arthritis, and other systemic complications besides the usual lovely gut issues.

By all means talk about a resection with your GI doc. It's certainly a possibility. But I would talk about Remicade as well and keep an open mind about it. It does keep many people in remission for years. Good luck!

Adam_C,
Humira, Cimzia, Remicade Three common Biologic s.

Knowledge is power, as was suggested, Read!

Every one is different so are the reactions to all the drugs for individuals. Remicade was great while it worked for me. But, all good things must come to and end. Cimzia, So so at best. Many like Humira.

The others gave you good advice.
T