New to the forum, diagnosed 8 months ago and so far nothing is working...help!

Howdy all,

I'm not quite sure how to go about this so I suppose I'll just wing it. I have had IBD symptoms for about 4 years and just ignored them. I was in the military, going to school and had quite a few familial problems for several years and just kinda figured "hell everyone must feel this way if they're as busy as me". Finally an army doc noticed I always was using the bathroom and had arthritis in all of my load bearing joints. I figured it was just from the rigorous physical training and stress of life, turns out I was wrong. I received my discharge summer 2010 and got my referral to see a GI.
So far I've done 2 colonoscopies, 1 upper scope, 2 rounds with the pill camera (which is neat) and was given the diagnosis of Crohn's Disease of the small bowel. After all of that business I still am not on a functional treatment plan. I've been on prednisone, flagyl, pentasa (for 8 months at increasing doses), colestid and prilosec. I've done a liquid diet for 6 weeks to no avail and keep an active food journal. My insurance won't approve Entocort which from what I hear might actually help me out!
I have a 'double-balloon enteroscopy' on this coming monday. They're going to take several biopsies from around the ol' intestinal tract and hopefully do a little maintenance while they're in there. Those biopsies should allow them a clearer picture of what's going on and how to best attack it (more meds, surgery, etc). In the last 2 months that I've been waiting for this test, my condition has been getting worse. I was already skinny and have lost roughly 15 pounds I doubt I can spare. I work out 5 days a week for at least 1 hour and although I'm looking a lot better I feel like absolute death most of the time. The worst for me is the constant, horrible joint pain and the 6-15x daily painful bowel movements.
Honestly I'm just worried this will never go away. I've been hospitalized once so far with an obstruction which was the worst pain I have felt so far and really got me down in the dumps. I've been missing more and more work and that's something I also can't afford, but how can I work if I have to use the bathroom every 20 minutes for 20 minutes? Doesn't seem very efficient for whoever I work for. I've always been an optimist and I know that God, Buddha or Allah put this in me for a reason, it's just REALLY hard to see that right now. Glad I have people out there like me because it's just impossible for my friends/family to really get what I'm going through. Sorry if this is a disjointed mess of a post, my college english prof would be appalled haha.
Thanks for reading this if you made it this far, and everyone who does keep your chin up and your pants down!


Jordan Mach

Sick and tired of being sick and tired

Hi Jordan and welcome!

First off, when they take those biopsies, if it's not going to cost you more, might I suggest you ask your doctor to have the lab check for mast cells?

Second, I'm sorry that you're having so much trouble and that your stupid insurance won't approve Entocort. Is there a way you can fight that? Or will they approve any of the biologicals such as Remicade?

I know it's hard bud. But it CAN and very likely WILL get better. Check our new "success stories" forum to see exactly that.

See you around bud

*hugs*

Jordan, having been in the service the first thing you need to do ASAP, if you haven't already, is get signed up for the VA hospital. The reasons for that are two-fold. One, if you can prove that you developed the condition AFTER you enlisted you might be entitled to a disability status. The second reason is because almost everything associated with your VA healthcare is free. You do have a minimum co-pay with medications, like $8 per month per RX, but it's essentially free.

Regarding everything you said, doctors will usually give you a course of prednisone to get the symptoms under control in short term. Once that's been achieved they will try various long-term medications until they find one that works, these include pentasa, imuran, remicade, humira and a bunch of others I have no experience with. That seems to generally be the process they follow and they will just keep giving you different meds at varying doses until something works. That's a very simplistic way to put it but I hope it was effective in giving you a big picture idea of what to expect.

Good luck to you and be sure to keep us informed of your progress!

Hi Jordan and welcome! I am sorry you have not gotten any better. However, your treatment plan is quite mild and you may need to step it up to some stronger medication. I suggest doing some homework in the Treatment section to see your other options.

And as far as Entocort, this will not help you as your Crohn's is in the small bowel. Entocort is made to release at the end of the small intestine to help those who have inflammation in their terminal ileum and ascending colon; therefore, it wouldn't treat your small bowel.

I sure hope you come up with a new and successful treatment plan soon! Hang in there!

Just finished my DBE yesterday. Whew the amount of gas in me afterwards was absolutely ridiculous. I've never farted so much haha and it was so painful! Today I'm just a bit sore from where they snipped the biopsies out. The doc said he did see the inflammation that was on the pill cam and grabbed a chunk of that and several other "healthy" areas to be tested. He is going to recommend I do the same procedure but the other way around, which means the awesome fun prep solution!...Anyway thank you all for your kind words, advice, and thoughts. As to the VA hospital SDN when I was discharged they gave me an IEPTS which means Injury Existing Prior to Service. Because of that I get absolutely no benefits and can't go to any VA hospital. I was actually threatened with jail time because I 'lied' about having a bad back when I originally joined. Fortunately for me my parents have pretty decent insurance and I can stay on it until my company's kicks in in about a year. This has definitely been a Godsend and I can't imagine how much money this would have cost me already had I not been covered. Anyway I'll keep ya'll updated as soon as the results get back to me. Thanks again!

Jordan Mach