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Monday, February 25, 2013

More Troubles!

So... I wrote up that last lovely post, only to have to pop into the ER dark and early this morning. My heart was going crazy - heart rate was increasing by 40 beats per minute when I stood up! Needless to say, I was very lightheaded and dizzy. I have been drinking a fair amount, and although my tummy is not feeling well, I am not losing a terrible amount of fluid due to output, so I am not really sure why I am getting so orthostatic and feeling this way. It may be my POTS acting up, or my body starting to crack around the edges after several weeks now of not eating well. Anyways, for whatever reason, I was in dire need of some IV fluids.

Remember what a great experience I had last week at the ER? Everyone was nice, everything went smoothly... This time, not so much. It was a rough visit on a lot of levels, and that's all I'm going to say because if I say anything else I will end up saying something that I will later regret and I don't want to do that so let's just say it was a rough morning and leave it at that shall we? ;) Thankfully, I got the fluids I needed, and they made me feel a lot better, and that's the main thing, right?

The ER doctor talked to Dr. New Jersey on the phone. I have an appointment with Dr. New Jersey tomorrow, but based on the relay of his conversation with the ER doc, I am not expecting it to be a very profitable appointment, but a necessary one nonetheless.

What Hannah Semi Colon felt like this morning
Please pray for my pain... it has flared up quite a bit and I need wisdom for how to best manage it...despite many interventions, I am losing significant sleep most nights due to pain and I am rather non-functional and miserable. None of the options (take more meds and continue to increase my already-sky-high tolerance, or don't take meds and be absolutely miserable and set off my autonomic nervous system issues) are great, and the alternative stuff I'm doing (an acupuncture/stim-type combo, gluten-free diet, Pilates, daily walks) just plain isn't helping.

Please also pray for me and my family: we are in serious need of wisdom as we try to make good decisions about my care. Please pray for Dr. New Jersey to truly listen to me tomorrow as I go in to hopefully get some answers about what we can do to fix my tummy and keep me outta the hospital!

Hannah ;)

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.

yummy
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 weeks...my 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 ;)

Wednesday, February 13, 2013

Catching Up...

There is much catching up to do... Here's a little glimpse into fun scenarios that played out this fall during my blog silence! ;)

I had an intestinal obstruction in November that resulted in a 10 day hospitalization (including an ambulance transfer to a larger facility since things weren't improving after several days at the first hospital, and surgery was imminent if the blockage didn't get a move on soon). I've had these blockages off and on since a few months following my first surgery back in 2009, but had never had to seek treatment for one (and I never had a blockage that lasted more than 6-8 hours). This was not a fun ten days. I was so dehydrated and my veins are so bad that it would take three or four different people poking around just to get a vial of blood for lab work. Getting a peripheral IV in me is super hard, and once they got one in, it didn't last very long before the vein would blow. Finally, they put in a PICC line, which we had wanted to avoid due to my blood clot issues, but life was much easier for me and all the nurses and lab techs after that. ;) The NG tubes - which (sometimes) helped the nausea and vomiting - seemed to constantly clog and therefore not work and therefore need to be messed with, usually in the middle of the night. Then, in addition to just being plain sick, I had three adrenal crises from the dehydration and stress on my body. Thankfully, after I got transferred to the bigger hospital, the blockage passed on its own without surgery, which was an ENORMOUS answer to prayer!! Once it passed, I was plagued with several weeks of severe dumping (go figure - from one extreme to the other!). Dr. Saturday prescribed a very strong medicine for the dumping. Most doctors have not even heard of it, but adding a drop or two of it to some juice slows me down when the pills fail me.

From late November through the end of the year, I continued to run a constant fever, have a very elevated white count, and feel simply terrible. I slept upwards of 16 hours a day, and spent my "waking" hours trying NOT to fall back asleep.
My PCP was very concerned, but couldn't find anything that might be causing this, so she instructed me to follow up with my specialists, especially with a GI doctor.
The Rheumatologist said it wasn't an autoimmune problem, and made me go off my immunosuppressants in case it was an infection.
A visit to Dr. Saturday and a scan revealed that it was not an abscess (thankfully!!). He referred me to the Gynecologist and a new GI doctor.
A trip to the GYN resulted in him insisting, after exam, bloodwork, and cultures, that the ball was not in his court.
So, I started seeing Dr. New Jersey, the GI doctor, who ran some tests, which were normal. Thankfully, I didn't have any active Crohn's inflammation in my intestines, and they couldn't see the narrow areas of bowel that they believe are the cause of my obstruction issues. So he sent me back to the internist and Infectious Disease doctor... but I've already had the tests that he wanted them to run, and they were normal, so I really didn't know where to go from there. This Doctor Ping Pong was rather frustrating, to say the least.

And then, at the end of December, just as mysteriously as it came on, the white count normalized, the fevers went away, and I felt the best I've felt in months. I didn't change anything (except I was off my immunosuppressant, which typically makes me flare up... but my body does its own thing!), so I have no idea why this happened, but I went with the whole "feeling better" thing and lived it up!

I was able to take walks 5-6 times a week - and not just dragging my limping self around the block - we're talking 50-minute brisk work-up-a-sweat walks (although with my constant hot flashes, pouring sweat is not necessarily a reflection of how hard I'm working)! With each step, I thanked God that my legs were holding me up, for the lack of pain, and for the strength I could feel growing in my body. It was truly amazing! I had a great month, my stomach was doing well, I cleaned up my diet, and with that plus the exercise, lost 10 lbs of steroid weight in a healthy manner! Who woulda thought, after all my struggles to GAIN weight, that I'd be in a position of having to try to LOSE some weight? God is good. ;)

In late January, I started having some pain around my knees when I was walking, so when I went to see Dr. JP (Rheumatologist), I told her about it. It wasn't in my joints - it felt like the tendons around my knee. She felt around and pinpointed the tender areas and sighed. "I hate to tell you this, but you're having pain at the edge of your joint capsule. You're about to flare up." I had just finished telling her how good I was feeling and how I was off methotrexate and loving being off of it...bummer. She told me to immediately start back on the shots - I'd been off them for almost exactly a month. Guess how long it takes the meth to get out of your system? One month. My body was feeling the change. And she was right - the next day, I woke up with red, hot, swollen joints. Thankfully, the flare up was very short-lived, and the joints are doing better now, but I had to increase my steroids, I'm still fighting really intense fatigue, and my stomach has been all messed up. Seeing the dramatic difference in my energy and functioning made me realize how even a mild joint flare up makes all my other issues spiral out of control.

JP Dr strongly encouraged me to start a new treatment - Cimzia - and I agreed. Cimzia is a biologic therapy, like Remicade and Humira. It's a shot I'll give myself every two weeks. JP Dr is concerned that my body continues to be in an almost constant state of inflammation, and my body really tanks when I get sick. The methotrexate alone is not enough to keep it in check, so when I flare, we have no choice but to increase my steroids, which is causing a lot of unwanted side effects and damage to my body after so many years of use. I also have that systemic inflammatory reaction when I get sick, which is rather dangerous. Using Cimzia would allow better control of my autoimmune stuff to hopefully prevent this reaction from happening. I will start this new treatment at the end of February. From researching on PubMed, it looks like efficacy at 12 weeks is a good predictor of long-term response, so if it's NOT helping after 12 weeks, it's unlikely to work, and I'll quit taking it.

Right now, I'm in the midst of some pretty bad tummy issues... I've been unable to eat much solid food for about a week now. :( I had a bunch of tests run on Monday. So far, they actually look pretty good, which is unusual for me and therefore GREAT GREAT news! Other tests are still pending, and I need to call the GI doctor to decide where to go from here. Based on my good lab work, we don't think that it's an infection, which is good, but it also scares me, because the pain and way I feel sick is very reminiscent of a UC flare up... makes me nervous that it might be Crohn's coming back.

I'm sorry for the long blog silence - sometimes I just need a break from writing about my health! I know this was an incredibly long post, so congrats for making it to the end. As always, God has continued to prove Himself faithful and good in the midst of sometimes difficult and sometimes wonderful circumstances. I trust that no matter what happens, good or bad, He will use it for good! I've been surrounded and buoyed by so many people, and I'm thankful for all of those who are faithfully provide so much encouragement and support! What a blessing!

Hannah ;)