New doctor, new tests...

So I finally switched doctors. After mine did the IBD serology and called me 3 weeks later to announce that I actually don't have Crohn's because they say I don't, I promptly called the IBD center that is treating me and asked to see a new doctor specifically at the center instead of at the GI faculty practice of the hospital. When I told Old Doc the entocort was working and my symptoms were essentially gone, he seemed shocked...then told me to call him in December! Didn't answer my questions

Anyway, new doc. Did his own blood work and ordered a stool sample test which I still have to go to a lab to pick up so I can do, and an MR Enterography.

The new bloodwork was also to evaluate me for Systemic Mastocytosis based on some other symptoms I have. Those were negative I believe, but no one has called to explain my test results to me, they just show in my online chart thing. My ESR was lower this time but still elevated. My WBC was 15k this time instead of 12. New doc also mentioned my C Reactive Protein was elevated on the IBD serology and said that the IBD specific ones were still not good enough to be a definitive answer. Also elevated on that was VEGF and SAA - I have no idea what either are.

When I called to schedule the MR they just told me I'd show up 1.5hr in advance, drink some stuff, then have the MRI. Wrong. Apparently I got a shot AND an IV for more contrast. I had that this morning. The barium oral contrast gave me diarrhea and I went about 5 times between the second bottle of contrast and when they called me back. They didn't force me to finish the third bottle but I had a little over half of it. That stuff was nasty - not as nasty as the MoviPrep for my colonoscopy but at least I got to drink that at home and with any fluid I wanted. Not being able to have water for 6 hours before or during made it miserable :( I had such a headache and felt so tired.

They gave my the glycogen injection after I changed and agreed to do my IV once I was lying down since I am prone to vasovagels.

All was fine until about 10 minutes into it, I needed the bathroom. But this time I mostly had to pee so bad it hurt. It was so painful, I started crying and had to get their attention. They let me out to pee but the tech was kind of rude, scolding me because it would surely compromise my exam.

How do they expect you to drink all that which causes diarrhea and is so much fluid, then NOT need a bathroom? Well, back in I went and 10 min later they started the IV contrast. A bit after that, I had to pee again horribly. I got their attention and they sent a tech in to keep me company because it was only 5 min left. I was in so much pain again because I had to pee SO badly.

This time I couldn't hold it but thankfully they let me out before I completely peed all over myself. Good thing too, since the diarrhea was back. The second tech was much nicer but I felt so horrible after the first one scolded me for having to pee, it was a terrible experience.

Plus, they make you drink that stuff in the waiting room which is full of 30 other people waiting for all sorts of exams!

I honestly don't think they'll find anything from this, sadly.

When I saw New Doc, he said he can't give a definitive answer yet and that he wanted to run more tests (which we're doing) and go from there. He said it could still be Crohn's or it could be something else. Hope we know soon since my insurance runs out Dec 31 and his office doesn't really take any of the ones I'm allowed to buy through the marketplace :/

Entocort is still working but he told me to go to 2x/day if the insomnia doesn't get better, etc. So I am going to start going to 2x/day - I need sleep.

I hope it gives an answer, I just have a feeling it's going to be "There's nothing wrong wit you" and that traumatic experience will have been for nothing and we'll be back at square 1.

We already have a plan for going off the Entocort - just need to get answers so we know what the next step will be. Old Doc was ready to write it off after IBD blood test came back negative and just have me go off Entocort in a week and see what happens. New Doc wanted more tests.

Hoping it shows what the colonoscopy didn't because I would rather have ten more colonoscopies then ever have an MRE again I'm just so overwhelmed and frustrated by having no answers and worried the symptoms will return when I stop the Entocort. Obviously no one here can give me answers either but the not knowing is wearing on me :(

At least now I'm advocating for myself more and at everyone's advice trying to get as many answers as possible and be as aggressive now as possible because of what this could become.

Here's hoping I get results soon.