I have been sick off and on for the past 7 years. The very first doctor I went to did a scope and told me I had CD and sent me home. He didn't tell me anything about it and I had no idea what it was. I did a lot of research on my own and learned about the disease. Needless to say, I found another doc because I didn't like his bedside manner. To make a long story a little shorter I have been to about 6-7 GI docs over the years and they all do the same tests and tell me it is IBS, even though they all found ulcers in my colon. They tried to tell me it was stress and I should just live a stress free life and things would get better. I gave up on doctors for about a year until I had had enough again. I was searching for a doctor who would help me. I must say, I found him at the Mayo Clinic. He really listened to me and what I had to say about all my problems. Then he did many tests and found the problem.
My symptoms are D most days (anytime I eat), weight loss, Vitamin B12 deficiency, and I have a stabbing pain in my lower right side that comes and goes (mostly stays). I have had so many tests done that it isn't even funny. One doctor told me I've had a multi-million$ workup. Let's see if I can remember them all: 5 colonoscopies, blood work multiple times, 2 capsule endoscopies, 2 small bowel follow throughs, many CT scans, 2 MRIs, multiple fecal tests, and lots of xrays. I know I am leaving some things out but I remember all the colonoscopies, or at least the preps.
I finally have a doc at the Mayo who says he has no doubt that I have atypical CD. I know he did many tests and consulted with several other docs, including CD specialists, at the Mayo Clinic. He found edema, inflammation, ulcers, and erosion in my small intestines. I also have inflammation throughout my colon. I have many vitamin deficiencies as well, but that is because I can't eat w/out being sick.
I have only been back from the Mayo for a couple weeks, so I'm still waiting for them to decide which meds they want to try for me. I have taken so many and they didn't work for me. So my doc is waiting for another CD specialist to get back from vacation so he can get his input before he starts me on something. He said he didn't want to start me on something for a week or so and this other doc say he wants to try something else. I am on pins and needles waiting to hear from him, but I trust him and will do what he says.
I suppose you learn from others experiences but I might suggest you concentrate on determining the hashimoto from the colitis. Are you on an antibiotic to rid your body of the causative bacteria of hasimoto? Couldn’t the rash be from hashimoto as much from colitis.
The colonoscopy will determine the extent of colitis inflammation and a biopsy can be taken so the sample of the bowel wall tissue can be examined under a microscope. The GI doc can distinguish between stool and bowel wall during the colonoscopy so don’t worry about the prep so much…crohns is more patchy inflammed spots,, colitis the inflamed area in entire colon and the more frequent blood leans towards colitis. You mention the waiting and the lengthy diagnosis in posts here, but its not unusual for a GI to distinguish colitis from colonoscopy or crohns after a examining a biopsy from a sample taken during colonoscopy.
Once again during all this waitng you certainly have time to go gluten free diet for example.
I am sorry they are putting you through this; the first few months are the hardest as you try to get it all figured out.
Post Edited (yogaprof) : 7/12/2008 7:44:05 AM (GMT-6)
My symptoms, although I did not know Crohn's even existed at the time, started a little over a year ago, with eye inflammation. I went to the eye doctor for about 6 months until finally we came to the decision that I needed to see an Internist. My Internist immediately thought it was Crohn's, and during that 6 month time frame, I did have a lot of "D" but I thought it was either my nerves or something I ate. Anyhow, I had the upper and lower scopes done, and although I had ulcers in the TI, inflammation in my cecum, inflammation somewhere else I cannot recall, cryptitis on my pathology, she refused to diagnose me.
Meanwhile, my Internist put me on Metronidizole and that helped. Then my eye got worse so my eye doctor and Internist sent me to a Rheumatologist. He found nothing so my Internist referred me to a second GI.
Before I could do the pill cam, I had to have the SBFT which showed nothing. I should also mention that all of my blood work has come back as normal, even the Prometheus Blood Test, which my new GI said can be negative and you can still have Crohn's.
I am waiting to hear the results on my pill cam, as of yet.
Anyhow, the second GI (I met with him before I did the pill cam) said that he believes I do have Crohn's, even though the biopsy and blood work did not "confirm" it. He showed me the areas in my large colon where the inflammation showed up and he said the pill cam will let him know how to treat it, if there is any disease in my small colon as well. Honestly, with all I have gone through with doctors, I am afraid that if nothing showed up on my pill cam, that he may change his mind. I hope not--I hope I am just paranoid.
Best of luck with getting answers. It is frustrating when you know something is wrong but they cannot find out what.
The SBFT (small bowel follow through) is where you drink the barium and they x-ray you every 20 minutes or so, depending on how quickly it moves through your tract. The idea is to see, I believe, if any abnormalites or strictures show up. I had this test done because my insurance would not allow me to have the pill cam until I had this one. I believe it only took about 1-2 hours until the barium had completely passed my small bowel.
Let us know how things go for sure!