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Soon to learn if I have Crohn's...

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Crohn's Disease
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Posted 10/9/2010 9:57 PM (GMT 0)

Hello Everyone! 

This is my first time on the site and I REALLY appreciate that there is a forum out there like this.  I am likely looking at a diagnosis of Crohn's in my near future and if that comes to fruition, I will have a ton of questions and aside from my doctor, nobody to ask! 

I am a 26 yo male and have been dealing with a whole host of intestinal issues for over a year.  The doctor I started with told me that he thought the problem was a "gluten intolerance" combined with anxiety, despite the fact that my colonoscopy showed an ulcer and inflammation in my ileum (the biopsy was negative for Crohn's and the endoscopy was negative for celiac).  When that doc wasn't really willing to discuss things further, I went to a new one.  He did a bunch of bloodwork and I guess one of my IBD panel tests was positive for the Crohn's antigen.  The new doc is great and is willing to help me figure this out, so he is sending me for a barium x-ray of the small bowel this week.  I am also now on Pentasa, which has helped considerably (but not completely).  

If my symptoms have subsided a great deal because of the Pentasa, does that mean that the x-rays won't show that I have Crohn's?  I am just so ready to have a diagnosis, because the uncertainty of the past year has been aweful!  I know that the camera pill will be the next step if the x-rays are negative. 

Thanks to all of you who are willing to share your experiences and what you have found to be helpful on this site.  If my diagnosis is Crohn's, I will certainly contribute as I learn more.  If not, I would recommended this site to anyone who has it. 

Thanks! 

Posted 10/10/2010 1:34 AM (GMT 0)
Welcome! I'm sorry you have to be here. :p

Just a heads up- sometimes there can be active disease that x-rays never pick up on. It doesn't mean it isn't there. I've had CT-scans, Small Bowel Follow Throughs (which you're having, it sounds like), MR-Entographies, and normal x-rays all come back normal and still have moderately active disease all through my small intestine. Pill cams are excellent to diagnose disease in the small intestine where scopes can't reach.

I'm very happy for you that the Pentasa is helping. I'm on it at the moment too. It doesn't seem to being doing much for me, unfortunately.

Have they done Celiac blood work for you? Crohn's and Celiac disease often go hand-in-hand. I have both, as well as soy and lactose intolerance.
Posted 10/10/2010 2:20 AM (GMT 0)
IMO, while Pentasa may help with your symptoms, I find it very hard to believe that it would heal your intestinal mucousa. It's not very strong, kind of the first drug you're given when dx'd with Crohn's. I was on Asacol and Salofalk and they're the same thing; they just dissolve in a different part of your intestine depending on where you're the most diseased.

I think that if there is active inflammation, there's a good chance your gastro will find it during your GI series or colonoscopy.
Posted 10/10/2010 11:14 PM (GMT 0)
Thanks so much for your comments! Both are very helpful.

As for the Celiac tests, in general my various doctors have said that they have been negative. They were in the "normal" range, but were on the higher end of normal if that makes any sense. They said because of this I may be "intolerant" but not allergic. The genetic test they ran showed that I am at an increased risk of developing the disease because I do carry one of the genetic markers, but the endoscopy was completely clean (except for a mess of acid reflux). I really hope it doesn't turn out that I have BOTH! ARGH! I have gone back to eating gluten since my new doc is "betting his dime" (as he put it) on Crohn's. I haven't felt any better/worse for it.

As for the Pentasa, as long as I take every pill as prescribed, things are pretty decent. My first doc is the one who put me on the Pentasa (not with Crohn's in mind, but to heal the inflammation and ulcers). He had told me that it should heal everything up to the point where I could stop taking it after a couple of months. Since I didn't realize it could be Crohn's, I tried to wean myself off of it a couple of times (I don't love taking three horse pills a day, but maybe I should get used to that). Both times I got myself into BIG trouble (and once it hit the morning of a business trip).
Posted 10/11/2010 1:47 AM (GMT 0)
I'm 26 years old, and I was diagnosed with Crohn's disease just 2 years ago. To be honest, every day has been a struggle since I've been diagnosed- being frustrated trying to find reliable information, managing spending a majority of my life in the washroom, struggling with chronic pain issues, finding a balance between school, my personal life, and my disease, and, most importantly, learning to let go of things I cannot control and I've been able to take for granted in the past. I've had to learn to live my life all over again. My best tips are to do research about medication options and side effects and to take your health seriously. I didn't think Crohn's was going to be as life-changing as it is until I suffered from re-occurring C. diff infections for an entire year and recently came down with a Crohn's flare so bad that I almost required surgery. I hope you don't have Crohn's disease. It's not all bad though. I feel I have a higher awareness and appreciation for life, family, and friends. I am the personality type to never give myself a break, and now I have an excuse to take it easy and a responsibility to do so.
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