Sunday, February 24, 2013

Tummy Troubles

So... the last few weeks have been kind of tough. We've had to increase my methotrexate, steroids, pain meds, and mineral supplements... and occasionally, I think the combination has helped a little bit. ;)

My tummy is disequilibrated... seems the little arthritis flare was just big enough to tip the delicate balance of my health off the scales. Since it's been over three weeks now of nausea, abdominal pain and issues, I went in to see Dr. New Jersey (the new GI doc) again last Monday. He didn't even remember that I have an ostomy (his first question was about my bowel movements. My good sir, my bowel moved out three and a half years ago!), which raised a bit of a red flag to me. He was a bit stumped on what to do, as all my infection tests run by my PCP last week came back negative (which is good - although something treatable would admittedly be nice and simple).

He asked me what the pain felt like. Honestly, it's kind of freaking me out, because I haven't had this type of pain since BEFORE my colectomy in 2009. He responded, "All GI pain feels the same." Having experienced varied GI pains resulting from UC, pancreatitis, pouchitis, abscesses, and bowel obstructions, I'm here to tell you that that is simply not true, but I'm sure he was just trying to make me feel better? He made an appointment to see me again in 3 months, and assured me that he felt this was a little bug that would run its course, but said I should call on Monday if I wasn't better by then.

I hope he's right... but 3 weeks of subsisting on a primarily liquid diet, interspersed with an occasional bite of my own gluten-free version of rice krispie treats seemed a bit extreme and lengthy for a little bug, and asked him at what point we need to do something so that I don't end up in the hospital from dehydration. So he put me on a three day course of anti-protozoa medicine and suggested a month of antacids. Honestly, I doubt I have either a protozoal infection or an acid problem. I think he just wanted to buy us a little more time to see if my tummy could straighten itself out.

Hi there, Giardia!
I took the three day course of the anti-amoeba med...but I am really quite sure that the symptoms I am experiencing are NOT due to acid reflux, so I filed the antacid samples under the bathroom sink. To be fair, I decided to do a bit of further research on this med... and I'm glad I did. This pill can impact my already low bone density, interact with my blood levels of anticoagulant (which are already mercurial, to put it mildly), AND, here's the real clincher: they are delayed-release pills, which means that I do not possess sufficient intestine to actually absorb the pills! Patients (especially ostomates): READ THE LABELS and do your research before taking new medications - be your own advocate. In this case, Dr. New Jersey was 0/2 on "remembering that Hannah has an ostomy," which does NOT translate into feelings of safety or confidence that he has my best interests (or even medical condition) in mind when making decisions regarding my care.

Late last week, I wound up in the ER after 15 hours of being very lightheaded and shaky (following several days of a popsicle, rice cake and gatorade diet). I was trying to get some IV fluids outpatient, but things were deteriorating, and the outpatient center expressed some concern with being able to coordinate what I might need, so the ER won out. But hey, it was a good 3 months of being hospital free - not too shabby!! The ER nurse was rather astonished that I'd put up with being this sick for 3 mom and I just looked at each other. My "normal" is just rather different than most peoples'. The doctor asked me if I thought I needed to stay in the hospital, but I didn't think I was there yet. My labs were pretty decent, I got tanked up with fluids and some IV medicine for nausea and pain, and came home. The ER people were all very, very kind and very good, and balanced - took me seriously without overreacting, weren't so overwhelmed by my history that I had to tell them what to do, but they still asked for my opinion. The IV went in on the first stick, and although it almost immediately blew and I had to get another IV, they got that one in on the first try, as well - that was awesome! So although I had to go to the ER, I'm thankful that it was a good experience - although not one I'd like to repeat, of course!

I hope that we can figure out what's causing my tummy to hurt and act weird... otherwise, I am pretty sure it's just a matter of time before I end up in the hospital for realses. It's strange because I'm not really getting any better, but I'm not significantly worse, either. Whatever it is, it's slow to "declare itself," as doctors like to say.

I had a bit of a bloodwork scare last week and this week... some liver tests turned out abnormally high, causing my Rheumatologist some alarm. Thankfully, on recheck, the liver enzymes were actually LOWER than normal, so we're guessing the first result was a fluke. Also, my blood thinner levels went off the charts, which had the doctor begging me to go home and go to bed for a few days, because if someone so much as gave me the evil eye or a high five, I could hemorrhage. They rechecked my levels in the ER on Friday, and thankfully, the levels are now back on their way to being too low again.  ;) In the 6 months since I've been on anticoagulants, I believe my blood levels have been in the appropriate range... once? These meds are hard to manage in ideal situations, but add in my variable absorption, and it's a bit of a nightmare for the good doctor to manage. Some people with clots can go off the med in about 6 months, but since my blood has been in the therapeutic range for probably all of about 2 weeks, if we're being generous, I'm sure to be on them for several months longer. ;)

I'm continuing to be troubled by dizziness, shakes, increased muscle pain, a lot of fatigue... I don't think it's "just" dehydration... I don't know if POTS actually "flares," but that's kinda how I'm feeling... I increased my steroids per JP Dr's suggestion, but it hasn't actually made much difference, which is weird and frustrating.

This post is already way too long, but in the near future, I hope to update about a new treatment I've been trying for pain and some trials, tribulations and victories of living with Squirt v 3.0...

Hannah ;)

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