How long for diagnosis???

[Olproblems]

Hi all,
I'm working abroad in Eastern Europe and I've become VERY sick with what seems to fit Crohn's symptoms like a glove. (Many of my family members have it)
I've spent 3 weeks in and out of ER and I'm about 20lbs smaller. I'm having the worst luck with anything resembling a diagnosis as doctors here seem incompetent and continually send me home saying "You're fine, continue your diet as normal." But I can't eat anything!!! I'm living off of nutrient drinks.
I finally got an appointment for a CT scan this morning but as i was laying on the table, hooked up to the machine the doctor (covered by my insurance) REFUSED to continue with the test and told me to go to a hospital that isn't covered by my insurance.
I'm trying to fly back home to Canada for better care but, in my fragile state i don't think my intestines can handle two LONG flights and the altitude pressure change. It already feels like they're about to rupture.

I'm just wondering if anyone can shed some light on your diagnosis process.
What tests have some of you veterans done that pinpointed your problem?
How long did you go through the diagnosis process???
Has anyone ever flown with a flare-up? Any advice?
What's a good anti-inflammatory drug to ask for? (the doc here recommended ibuprofen)

 

[KazT17]

Hi Olproblems, I am no expert but ibuprofen is definitely not advisable if you do have crohns. When I was first diagnosed, steroids induced remission for a time. Prednisone. I was diagnosed via an endoscopy, not sure how accurate a CT is for diagnosis unless you have a stricture. Other drugs will depend on your diagnosis and location of the crohns. Some specifically target the colon etc.

If noone else replies here, post in the 'my story' section.

Good luck, I hope you can get safely to Canada and get the treatment you need.

Kaz xxx

 

[UnXmas]

Hi all,
I'm just wondering if anyone can shed some light on your diagnosis process.
What tests have some of you veterans done that pinpointed your problem?
How long did you go through the diagnosis process???
Has anyone ever flown with a flare-up? Any advice?
What's a good anti-inflammatory drug to ask for? (the doc here recommended ibuprofen)

Diagnosis comes via endoscopy (and/or colonoscopy, depending on where your disease is), usually confirmed by biopsy. There are other tests that can help suggest it too, I think.
It took years for me to get diagnosed, but only because I didn't get tests for so long because my doctors assumed I had Irritable Bowel Syndrome. Once it was ordered, I waited a few months to have an endoscopy (I'm in the UK on the NHS).
I've not had problems flying other than finding airplane toilets really gross and having to spend ages in airport toilets getting anxious I'll miss my flight! It sounds like you're in a worse place with your health than I was though, so it might not be wise to travel if you're having doubts.
As has already been said, Ibuprofen is hard on the stomach, and it's mainly a pain killer, I don't think its anti-inflammatory effects work well for Crohn's.

 

[SarahBear]

Hi, Olproblems!

Any update on your condition?

Diagnosis is usually by colonoscopy (where biopsies are taken) - that's at least the first step. If nothing is found, an endoscopy and/or capsule endoscopy (pill cam) are usually done. They're not always done in that order. Sometimes disease is seen with a CT scan or MRI, and then the more invasive tests are done to confirm. There are also blood tests that can help point you in that direction, but a blood test alone doesn't diagnose.

Unfortunately, it can take quite a while to be diagnosed. A lot of people have been in situations similar to yours. Many of us are just told, "It's IBS," or, "It's your nerves," for years before any tests are actually done. It can be a very frustrating process. There are others who have a solid diagnosis within a few months or less of feeling symptoms. It seems to depend a lot on your doctor.

Like has already been said, ibuprofen is something you should avoid if you're having Crohn's symptoms (or any stomach problems, really). Tylenol is okay, but as it's not an anti-inflammatory, all it does is help with pain or fevers.

I don't have any experience flying while in a flare, but I think Laura Dawn just went on a trip while in a flare. She might be able to offer some advice.

 

[Johnnysmom]

My son had a CT scan when we brought him to the ER for stomach pain and they just sent us home. It showed bowel loops which I guess is normal in crohn's but ER Dr.'s just don't have the expertise to diagnose crohn's. You need a G.I. Dr. and you need a colonoscopy and upper endoscopy. If you are feeling very poorly I would go to my general Dr. and get him to get you admitted and scoped or into a G.I. as soon as possible.

Also, I was treating my son's pain with ibuprofen. It took away the pain but his stomach was full of ulcers when they scoped. I know the ibuprofen made things worse so avoid it if you can.

 

[Ihurt]

I dont get why they would stop your CT scan right in the middle of it??? That is crazy. I totally get your anxiety over this. I have seen many doctors and cannot say that they have been very useful. That is what you get with western medicine. They are not very good when it comes to diagnosing or treating chronic illness it seems..... I am sorry you are going through this.