Like most people, I went through a couple of years where all I could get were, "It's all in your head," or "It's just IBS. Eat more fiber." Nobody really suspected Crohn's, because my symptoms were not typical: vomiting, nausea, mouth sores, and terrible abdominal pain. Almost all of the tests for various possible diagnoses were negative, save for a few that did point to Crohn's: an EGD and a small bowel enteroclysis that showed thickening and ulcers, but the doctor who ordered these tests did not think they were worth looking into, stating that I probably took too much ibuprofen and had some kind of "infection".
I finally went to see my father's internist, who is very good with diagnostics. Based on the results of the tests the gastroenterologist didn't feel were worth looking into, he suspected Crohn's, and sent me for a Prometheus test (positive for Crohn's) and a pill cam study (ulcers suggesting early Crohn's).
The gastroenterologist who read the pill cam skipped town. Claimed he was going back to his home country, but he's since
opened a new clinic about
20 miles away. He sent me out the door with a free trial of Pentasa, basically said adios, and that was it. No referral to anybody else, either, so my internist managed me for over a year. He put me on azathioprine (I didn't have prescript
ion coverage at the time, and Pentasa was WAY out of my budget), and I responded really well to it.
My dad wanted me to get a second opinion on the Crohn's opinion, so I went to the University of Utah. Had a colonoscopy that came back with active inflammation. Nothing major. I had been on azathioprine for about
2 months before then, so who really knows? That particular gastroenterologist also agreed with "mild early Crohn's," and that was pretty much it.
Azathioprine worked great for almost a year. Symptoms were still there, but at least became tolerable. I had so many good days. Then my father died in July, symptoms went through the roof (don't know if it was stress-related or what), and eventually ended up with a bowel obstruction in August. It righted itself on its own, thank God, but ever since, nothing has worked.
I'm throwing up almost every single day, pain is unbearable, and I'm just going out of my mind.
My internist admitted it was out of his depth after two short-courses of Prednisone (that did absolutely nothing but make me break out) and sent me to a local gastroenterology group that I haven't had much luck with before. The "see ya later, sucka" doctor was part of it, as well as the first GI I ever saw, who told me I was overreacting and that it was all in my head.
They couldn't get me into the GI who came best recommended (3 month waiting list), so I agreed to see the nurse practitioner. She put me on Pentasa again (4/day, then 6/day, and now 8/day) with no results. I had an EGD shortly after starting the Pentasa, which showed nothing conclusive, only inflammation. Some kind of blood test (no clue what the name is) for inflammation was also very high. The vomiting has gotten considerably worse since then -- some days, all I can do is kneel in front of the toilet.
The NP finally told me that I was getting to the end of the conservative options and needed to try Remicade. I was kind of reluctant (obviously, since it's only "mild"), but she said my only other options were hospitalization, steroids, or Remicade. I'd rather get hit by a bus than go back on steroids, so I decided to do the Remicade. I had my first infusion two weeks ago, with no obvious effect. Only that my bowel movements have been more normal, but who knows if it's the Remicade or if it's just coincidence?
I saw the "it's all in your head, you're overreacting" gastroenterologist today. The NP recommended I see him to check on how I'm reacting to the Remicade, blah blah blah.
He read quickly over my records, said there was barely anything in there to indicate I had Crohn's, test-wise and symptom-wise, and that using Remicade was like killing a fly with a hammer (which I partially agree with). My symptoms are apparently "do not sound like Crohn's" -- well, DUH! They never did! He told me to cancel my Remicade infusion on Monday -- he wants to do a colonoscopy, EGD, and pill cam study on Monday instead, all in the same day or two.
I'm wondering if this will throw off the whole induction schedule. This was supposed to be my second one, so if these tests do indicate that the vomiting is Crohn's-related (it definitely was before!), will I have to start all over? Week 0, Week 2, Week 6? Or what?
Frankly, I'm furious that when I'm throwing up almost every day and am completely miserable, all he can say is that all I've got is mild Crohn's (if even that, he's not wholly convinced I even have Crohn's), and it's probably nothing, blah blah blah. I don't care if on a microscopic level, it's only mild -- symptom-wise, I feel like trash. I thought that finally having a diagnosis would mean not getting dismissed like a whining kid, but apparently, you've got to have more impressive test results for that.
Has anyone else had a colonoscopy, EGD, and pill cam study all on the same day, or on two consecutive days? Is it tolerable?
Diagnosed with Crohn's in 2008 at the age of 22.
Currently on: Remicade, Imuran, Pentasa, Zofran, Tramadol, Welchol, Phenergan, Ambien, Metoclopramide, Omeprazole, Hyoscyamine
Post Edited (onedaymore) : 2/4/2010 7:13:51 PM (GMT-7)