Time to demand medication?

you usually have to have a diagnosis of Crohn's in order to get Remicade, not sure about the other drugs like prednisone and 6mp though. Remicade has to be approved by your insurance and it can take weeks- they'll send you a big packet and call for information about your disease.

Don't waste your shot at Remicade, once used and stopped you may not be able to go back on it. You may build up antibodies. For some the steroids help What about Nexium for the ulcers. I'm off it and cannot use it again.

"You had a capsule endoscopy that showed ulcers in the small bowel and your GI says you have irritable bowel syndrome? Get a copy of the endoscopy film and go to another GI."

Agree 100%. I guess the only thing I would add is , run don't walk to the new GI

Thank you all for the quick responses and all the help. To give a clear picture of what my GI is going off of, my procedure report findings read as follows;

"limited evaluation of the stomach shows a few gastric erosions. Bile was also noted in the stomach which may suggest some degree of bile reflux. Overall visualization of the small bowel mucosa is fair, although there were some areas covered with liquid fecal material. The vill were normal appearing with no evidence of atrophy. There were a few scattered erosions noted throughout the small bowel. No ulcers, or strictures were seen. There was some nodularity noted in the terminal ileum which may be secondary to lymphoid hyperplasia."

I use the term ulcer instead of erosion because everyone I have talked to (friends of the family who are doctors and nurses) have used them interchangeably. The GI wants to do a "push endoscopy" to try to take a biopsy of my small bowel to "confirm or disprove Crohn's". He said if the biopsy comes back negative then he will no longer discuss any chance of Crohn's. However, from what I understand, there is still quite a bit of the small bowel they can't reach and knowing my luck what they can reach will all come back normal.
I am getting somewhat frantic because while overall my pain and bowel movements have been managed by diet (fatigue still a major factor and I don't exactly like being on a diet that the Dr. says I don't need to be on because I'm "fine"), last night I had a pain flare that left me considering going to the ER (I held the diet through Thanksgiving and didn't stray from a single part of it). I fear that there is no hope to have any relief before the holidays. That thought alone has brought some depression with it. I know this is the normal course of a diagnosis for those with small bowel Crohn's, but I'm starting to lose my mind.

I had one, but they didn't see or take any notice of the nodularity when I had the Colonoscopy which was about a year prior to the capsule.

NiceCupOfTea said...

You haven't been on NSAIDs recently, have you? Bit of an obvious question, but they can cause ulcers in the small bowel.

I haven't taken a long term dose of them ever. At most I've taken a single dose once a week.

NiceCupOfTea said...
If the villi were normal, I'm guessing that rules out possible Coeliac Disease...

yea, they've cleared that 9 ways to Sunday. Biopsy, blood work (2x), Pill camera, all clear.


With any luck I can find a new GI Dr. soon.

No worries, it's down to persistence now I think. It'll just take a bit of work to get the doctors to figure things out.

kazbern said...
have you tried a gluten free diet to see if that relieves some of your issues?

Yep, to no avail. I was gluten free for about a month and it didn't seem to change anything.

kazbern said...
And you might consider a HIDA scan to check gall bladder function.

Had a HIDA on Friday, we're waiting for results. If I'm lucky that will be it and they can just take out the gallbladder.

Good luck!!!!