Feel like I'm getting the runaround...

[AgB621]

So my gastroenterologist keeps insisting I have Crohn's even though my colonoscopy was negative, but he wanted to have me get a second opinion from another doctor in the office.

This new doctor wants to do a pill cam, but she says Crohn's is "unlikely" given my negative biopsies. So what the hell, do I have this or not? She says I would need another colonoscopy done while I was sick in order to know for sure.

Of course, just IBS doesn't explain my high white count, but she had nothing to say about that.

I'm just so frustrated with all of this. If I don't have Crohn's, that's awesome, but not knowing is making me :ymad:

One thing I did learn for sure: I have Hashimoto's Thyroiditis. An endocrinologist diagnosed it this morning, she said it was "classic Hashimoto's". But she also doesn't think that the fatigue is related but I'm getting my thyroid hormone levels checked anyway. I have roughly half the symptoms of the hypothyroidism associated with Hashimoto's, but I've had them for 11 years so I have a feeling more would have shown up by now if they were related. She also wants to do a cortisol test but it's unlikely that will yield anything.

I've had 10 vials of blood drawn today, which amounted to 5 needle sticks. My veins are so tiny and finicky. I guess I'll just wait and see what the bloodwork says. Not much else I can do at this point.

 

[Kittee]

Don't feel bad! I went through the same thing. Until about 10 visits, 50 blood tests, and endoscopy it wasn't until the camera pill test until they told me with-out a doubt I had Crohns.

It's a process. Good luck and patience to you.

 

[mrs. vr]

I'm going through the same thing right now. I'll have some more test results on Monday, but it's been a long hard road so far. I have the ASCA antibody, but my colonoscopy, etc were negative. My rheum and new GI doc said they are CONVINCED I have crohn's, they just have to prove it. Ugh.

 

[AgB621]

I have the antibody too, but I understand that isn't definitive. They're also doing the blood test for Celiac antibodies (which my father recently tested positive for, though he's not in a position right now with his job that he can take the time to do a biopsy, so we're both just going gluten-free to see what happens...and I haven't been gluten-free long enough for the antibodies not to show up, if I have them).

It's just frustrating cuz right now I have one doctor saying, "Yes, Crohn's (almost) definitely!" and another saying, "Probably just IBS!" Just tell me which it is already!

 

[teeny5]

My case is the opposite. My colonoscopy showed what looks like Crohn's but I don't have the antibody. Frustrating isn't it?

 

[AgB621]

Why is it so hard to get one stupid diagnosis?!

 

[AgB621]

An ultrasound is one thing they haven't done for me, maybe I will suggest it to my GI next time I see him. I am pretty thin at this point, I've definitely lost a fair amount of weight. When I put my hands on my hips, I'm surprised at how different my waist feels. I guess IBS could do that just as well as Crohn's, but...I'm never hungry anymore. Sometimes I feel like my body is hungry but my stomach isn't, I'll feel really shaky like I have low blood sugar, but the thought of food is just like, ugh.