Sad and Frustrated

[mccindy]

Well I just had a visit with the doctor. The mass they saw on CT looks like a water-filled ovarian cyst, nothing to worry about. It doesn't explain the bowel symptoms though. He didn't see any inflammation anywhere and all blood tests were negative. SO back to square one. :ybatty: I'm so frustrated! He says he feels definitively it's not Crohn's because he doesn't see any inflammation on MRI and nothing on the blood tests. But then he also doesn't know why I have pain from trigger foods, and night sweats. :yrolleyes: He said it could be bowel endometriosis but he doen'st think an invasive lap is a good idea, and that's the only way to diagnose that. He also didn't think I would need a colonoscopy since he didn't see anything on the MRI. Now he wants me to go see a gastro group up in the Cities (that's Minneapolis-St. Paul). So I guess it's a good thing that now I'll be seeing an actual gastro to figure out what's going on. But I am so FRUSTRATED right now because I thought I'd have some answers and I don't know any more than I did when this all started up. :ymad: I know that what I'm going through is not nearly what so many of you are going through but I still feel horrible today with pain and nausea and wish I had some answers.

 

[araceli]

Sorry you don't have answers yet. I know it is very frustrating. Good you are seeing a Gastro, maybe he will think it is worth to do colonoscopy and endoscopy, to take some biopsies. You are in pain, so if Dr don't find something in one test they should do others until they find the cause of your pain. I hope you have more support from Gastro.

 

[mccindy]

Thanks araceli, that really does mean a lot. I am hopeful that at least seeing a gastro he will have more ideas or something. Hopefully a good one! I am not looking forward to the idea of a colonoscopy, and my doc here didn't think I should have one, but I know gastros are usually more proactive and probably will want to do one. The internal doc I saw here said that since he didn't see any inflammation on the CT and MRI, and all blood tests were negative, he is sure it isn't Crohn's. Which is a good thought, but I know there are plenty of people right here in this forum who had negative blood tests and no inflammation that do have Crohn's. So I'm not getting my hopes up yet! I plan to keep on nagging docs until I get an answer though. In the meantime trying to stick tight to the elimination diet because it does seem to be helping (mostly). I know I usually do fine with one piece of bacon but I had one this morning and now my belly is hurting so I'm guessing I will have to stop eating that too. <sigh>

 

[Cat-a-Tonic]

Aw, I'm so sorry to hear it. I've been undiagnosed myself for about 3.5 years now so I totally understand your frustration! (They think I have IBD, I respond well to IBD meds, but it's been really elusive and hasn't shown up on any tests - so it sounds like we're fairly similar cases.) How was your Crohn's diagnosed the first time around?

I wish you lots of luck in MPLS/St. Paul. Hopefully they can figure things out, although you're probably right, they will probably want to do scopes. If that ends up being a dead end, have you thought about going to the Mayo Clinic? I know it's in MN but not sure exactly where, so it may not be feasible depending on how far away you are from it. I know Mayo has a good reputation, although I've never been myself.

And hey, feel free to join us in the Undiagnosed Club if you'd like. There's a great group of people in there who can all relate to the frustrations you're going through.

 

[mccindy]

Thanks Cat - I will join up. I know Mayo is in Rochester, so not TOO far away if I had to go there. My original diagnosis was by colonoscopy, but I don't know if the doc took biopsies or not.