Not sure of next step. Pancreatitis?

I've had UC for about 12 years now. I've been on Asacol, Apriso, Canasa, humira, and now am on Imuran and Entyvio.
I had foot surgery in May and that doctor requested that I temporarily discontinue all immunosuppressant meds, so I was off the imuran (not a big deal since we can't get the levels right) and had my Entyvio infusion two weeks late. I've been back on everything since June 12th, but right now I'm doing worse than I was when I was off of everything.
I saw my GI doc last Monday because of nausea and upper left side pain (two very out of the ordinary symptoms for me). He ordered amylase and lipase tests to check for pancreatitis. He also set me up for a colonoscopy at the end of this coming week, and said no steroids because it might mask the problem during the scope.
I called Thursday to check if labs were back and let them know my pain and nausea were worse--no call back.
Yesterday I noticed bleeding, which I haven't had trouble with since before the Entyvio. I'm constantly nauseated and getting up to go every half hour or so. I don't think it's pancreatitis, the pain isn't quite debilitating. Is this just... Do I just deal with this until my doc does the scope? It's been a while since things were this bad, and I'm upset and don't know what to do.

I'm so frustrated. Thanks for your help, though!

Have you discussed symptoms with your primary doc? In case it's not UC related. Kidney stones? Ovarian related? Appendicitis (nausea a symptom) can be upper abdomen but pain usually on right. Have you had colon infection tests?

Let us know how it goes!

Can you get a second opinion? Schedule an appointment with another gasteroenteroligist to review your case and test results? I ask as UC is a lifelong illness, and you need to have a doctor you trust, who listens, and you work well with. Our doctors are supposed to be partners in our treatment, describe our treatment options, be sounding boards to bounce treatment pros and cons off of, etc. They're here to help and guide what's needed to have the best quality of life we can with chronic illness.

Perhaps this doctor's office is too busy to give you adequate care, your personalities clash and do not work well together, or he/she is just a garden variety idiot without the knowledge you need to help you out lol!

Post Edited (iPoop) : 7/9/2018 9:01:31 AM (GMT-6)

I think the stool tests are a good idea considering, and probably the pred, but it's true that you could have the results of your scope change drastically by the addition of the prednisone. I guess at this point, it doesn't matter, you just need to be able to get through the days until the scope without being miserable. The 2nd opinion is never a bad idea. Hopefully you find someone you like and trust so you can get faster results, and you don't have to answer the same questions repeatedly. Best of luck this week. Did you fill your order for the pred and the stool test?

Going to do the test and Prednisone when I get home from work. Family and I have agreed that if I keep throwing up, the ER is an option but other than that I think we're going to do the stuff my doc suggested.

Wild story about imuran: it was SUPER BAD in March. Like 6mmpn was something like 16000? (But he told me my labs were fine and took two weeks to tell me to reduce the dose-another thing I was uncomfortable with) I've been on imuran since I was diagnosed and NEVER had issues with it. We took the dose all the way back down to 50 mg (it was at 200mg) and have been doing the thiopurine checks. I had a liver function test shortly thereafter and my liver was fine. the thiopurine checks have also been fine. I'm up to 75mg again.

[I have a feeling the cymbalta I was taking for joint pain had a hand in those levels, because it was the only difference. I hated that anyway though so I stopped taking it.]

Is it ever a sharp pain? The gnawing sounds about right though. My disease has been active this whole time, which is another issue entirely, sigh. He's worried the Entyvio isn't doing it's job, but it was a clear improvement so we're still doing it.

Did the stool thing sending it off today. Can now pick up pred script but am now throwing up even just water. Thought it was getting better because I managed some food last night but apparently not

Doc cancelled scope because of pred nonsense. At pharmacy now. Went to ER this morning because I couldn't keep anything down. That doc gave me zofran and antibiotics but DIDNT explain what "fatty replacement of the pancreas" means (I didn't see it til after I left or I would have asked.)

I feel like all the weird crap I've encountered this year (weird imuran levels, nausea, the band of pain, apparent mild steatosis around the liver) is connected but I don't have a primary care doctor so nobody but me is connecting the dots and I'm not a doctor.

They did vitals and blood work at the hospital, most of which are okay. The scan showed just mild inflammation with fatty stuff around the colon itself. That's where the "fatty replacement of the pancreas" thing came from. (Though he didn't tell me that, I just have the patient app and access to all my tests/bloodwork.
I'm managing to eat with the help of the zofran, I kind of... I thought if something was really really wrong they'd admit me then. I plan on calling the primary care doctor I signed up with tomorrow to see if there is any way I can get in this week.

I have same pain in the left upper quadrant on and off for a few years now, done 3 CTs, upper endoscopy, hips of blood tests but noone can tell me what's wrong, apart from slightly elevated amylase everything checks out- it's super frustrating, the pain hangs around all day for days and the only thing that helps is fasting for a day or two. hopefully you'll have better luck at finding someone who can identify the problem and would know haw to fix it