confused...

I'm new to this site as I was diagnosed this week with Crohn's.

I have been living out of the US for the past 2 and a half years, and came home in june for the first time in over a year. In the last 10 months I have experienced what I guess would be Crohn's symptoms on a few occasions (and lasting no more than a day or so) and somehow assumed I had IBS (my mother's side of the family has IBS but I have no family history of IBD/ Crohn's).

A few weeks ago I was very stressed and my mom encouraged me (ok, begged me) to go see her doc because I was having abdominal pain and going to the bathroom more often. Her doctor referred me to a GI and I was encouraged to do a colonoscopy. This was all very surprising to me, as I am 26, have no insurance, and was therefore very hesitant to do any further doctor's visits/ exams.

Well, I agreed to do the Colonoscopy and the GI informed me after the procedure that things appeared to be ok, with the exception of some very mild inflammation on the right side of my large intesting. He said that it was possible UC but very mild and might not even require medication. He also explained that he had taken other biopsies and would let me know of these results.

A week later, his office called me requesting that I undergo 2 MRI's (abdominal and pelvic), explaining that the biopsies confirmed IBD. Unfortunately, I couldn't afford to do the MRI's without insurance so they went ahead and scheduled me for a follow up with the doc to discuss my options. At the appointment I was literally blown away. He told me that the biopsy results indicated that it was Crohn's, and although my large intestine appeared normal, the pathology results showed that it was affecting my entire colon. From what I understand this is not typical crohn's, which tends to be in the small intestine.

I've now been told that not taking medication is not an option. My doctor prescribed me APRISO, which I am unable to take because without insurance it costs nearly $600/ month. I am leaving on wednesday to go back to Europe and explained to the doctor that I don't understand why I have to take it if I feel fine, and he explained the even if I feel fine, the inflammation is there, and that if I don't do anything about it, things could get much worse. He told me that the equivalent drug where I am living is called CLAVERSAL, and urged me to find a GI who can prescribe it to me when I return.

How often do people with Crohn's need to undergo colonoscopys? My doc said that it depends, but this is stressful for me as I am now unable to find health insurance in the US.

Can anyone give me any insight/ suggestions? I am really confused... not to mention scared about the idea of it getting worse while living abroad...

Most importantly: Should I take the medication if I feel fine and have never had a major "flare up?"

Thank you to anyone who could help...

I agree, do not leave this untreated! When you feel 'bad' it could be too late to control it:(

Well unfortunately I am going to tell you the samething as the above. When left untreated, even if you think you feel fine, Crohns is still in there doing its damage on a microscopic level without you even knowing it until BAM one day you are in a world of hurt and possibly having to have surgery. There are some who will tell you if you do this diet or take this supplement you will be okay. But that is NOT true. In order to adequately treat your Crohns you must use diet and meds to keep it under control. I learned that lesson the hard way, and I ended up having to have emergency surgery to remove nearly a foot of intestine. And I will be honest, life has not been the same since. I no longer digest things as well, and the things I can no longer eat, has grown. So please do find some way to get treatment, or things could get really ugly for you. Good luck!

Thank you all SO much for your replies. I started Apriso this morning (my doc gave me a 10 day trial) and will find a GI to prescribe me Claversal (the mesalamine drug used in Italy).

One more thing... Since I wan't able to do the MRI, we don't know if my small intestine is affected. The doc told me that during the colonoscopy you can only see a small part of the small intestine.

So although I was diagnosed with Crohn's, it sounds like the medicine I'm using is most commonly used for UC. Does this mean that I could be at risk if my small intestine IS in fact affected, since I wasn't prescribed a different medicine for Crohn's?

Maybe you could ask your doctor, or one you find in Italy, about lower cost meds. Unfortunately, a lot of meds are expensive, but perhaps they could find something to try that costs you less.

Aside from that, I do agree that you should be on medicine, even if you feel "fine" now. You might find that after being on medicine, you feel better than now, and look back and see that you weren't doing as well as you thought you were.

I wish you the best! Glad you found HW, but always sad to have another member join the crohn's family.

When you're back in Italy, are you able to hook up with a GI there and do the rest of the tests to confirm whether or not Crohn's is in your small intestine or not? (the MRI, etc.).

Since you don't have insurance, it sounds like it may actually be better for you to be abroad becuase from what I understand about other countries' medical systems, they aren't nearly as difficult as the US's, and drugs are much more affordable.