Sunday, September 30, 2012

Same Song, Nth verse

Same song, ??th verse
Lil bit louder
and a

I'm writing from my home away from home... yeah, don't make me say the H-word.

I had a good run there for about two weeks! Pretty decent energy, good appetite, not much shakiness or dizziness! Then, I started dumping a little, then my pain kinda spiked. Neither one was awful, but each was a small step in the wrong direction.

Early Thursday morning, I started dumping very, very badly, and then started vomiting. Seemed like just a tummy bug... but alas, it took all of about an hour of this until I totally crashed and was an incoherent, shaking, sweaty mess. I felt so bad that I actually told my mom that we needed to call 911... yeah, it was that bad. I really felt like death.

I'm sure my rescuers were heroic and brave, but I was way beyond noticing them - I was just focusing on breathing in one more time and breathing out one more time. A couple of guys got to work right away trying to get an IV in me. I am a terribly hard stick to begin with, but then you add in dehydration, and it's gonna be quite a challenge. After a couple sticks each, they somehow got a baby IV in and immediately started dripping in fluids and medicine.

When we got to the ER, everyone kept poking me all over the place, trying to get in more IVs so they could get more fluids and meds in me, since I was massively dehydrated and continuing to lose fluids. My belly hurt so bad. My white count was through the roof, and my lactate was elevated, which is a marker for sepsis, infection in the bloodstream. Finally, they put in a PICC line (#7? I think?). The doctor called Dr. Saturday, and they deliberated about doing another scan, but decided to wait.

The doctors believe that I have some kind of infection, and my body had that Systemic Inflammatory Response Syndrome (SIRS). This can progress into sepsis if not treated quickly, so the ER doctor said it was very good that I came in by ambulance, or I could have gone into shock sitting in the waiting room. I was thankful for how quickly everyone worked to help me (and this includes Mom and Dad for sacrificing their day, among other things, to sit in the ER with their incoherent daughter). Usually in the ER, you see the nurse or doctor once in a blue moon, but we were rarely alone -- there were often three people in the room working on IVs, orders or monitoring me to make sure I was okay. The ER doc introduced me to the internist (Dr. D) who would be looking after me in the hospital. He was wonderfully smart and funny and nice. God was so good with His perfect timing and with providing some amazing caregivers.
So that's how I found myself back in the hospital, on IV antibiotics, stress-doses of steroids and my other meds in IV form.

I was very out of it for most of Thursday, but began to perk up a bit by Thursday night. Until Friday evening, I felt a bit stronger, but still had pretty bad nausea and belly pain. By Friday night, however, I turned a corner, and on Saturday, I started to feel like myself again. Praise God!

Hopefully I will be able to go home sometime tomorrow! This would be a very short stay for me, so I'm excited (but wish I could go home today). I'm eating again today, and they have turned down my IV fluids, and I'm trying out pills instead of the IV forms of my meds. I just need to stay hydrated, absorb my medications and eat and I think I'm almost there!

The SIRS is what they think happened after several of my surgeries - I usually get terrible pain, elevated white count, fever, and overall feel absolutely awful. ;) I asked about how to prevent this from happening again - basically, don't have adrenal insufficiency, don't have autoimmune issues, and don't take any immunosuppressants to treat the autoimmune issues. Oh, and don't have underlying dysautonomia, which already causes problems with heart rate and blood pressure. And having all your intestines would probably help, too. ;)

This came on scary fast, and it's a bit disconcerting to be told that this can happen to me as a result of any illness, surgery, or stressor. The doctor emphasized the importance of being very aware of my fluid status and heading directly to the nearest ER the moment things start going south.

Thankfully, God is in control of all of that... and I know I can trust Him.

Hannah ;)

Wednesday, September 19, 2012


So... today was an interesting visit to Dr. Saturday!

I went to see him for the procedure on the weird wound-thingy by Squirt.

Misinformation called me back and put me in a room. She asked, "Is this just a follow-up appointment?" I told her I was here for the biopsy/removal of the wound issue. She hadn't known I was here for a procedure, so she left to go get some equipment to set up the room. She returned with vials and needles and sheets and stuff like that. Then she said, "There's three patients ahead of you, then Dr. Saturday will be in. Just take everything off and lay on the table."

I asked how long it would be. She told me, "Well, awhile. Like I said, there's three patients in front of you."
Since it honestly takes me about 15 seconds to take off my ostomy bag, I asked if I could wait to take my bag off. I just didn't see a need to strip down and lay on a table for 35 minutes with Squirt squirting everywhere! This is a new office, and I had visions of the brand new exam table, nice clean white tile floor and freshly painted light blue walls splattered with Squirt "effluent." I'm not really sure why she thought that would be a good idea! Thankfully, she agreed to let me wait.

Dr. Saturday came in with a huge grin. "Guess what?"

He recently went to a conference about IBD (Inflammatory Bowel Disease). One of the speakers was a dermatologist. They talked about the types of skin problems IBD patients can have. There's the Pyoderma gangrenosum (Google image at your own risk). Then there are these other weird skin and wound ulcers and issues that apparently look just like what I have by Squirt and had with my surgical wound from my surgery last summer (you know, the wound that took 9 months of intensive wound care with multiple treatment modalities to heal...). These ulcers are associated with Crohn's disease. Evidently, the worst thing you can do for these ulcers is surgery - it makes them worse or spread or something. The appropriate treatment is injection with steroids. He was very pleased to learn this information.

Thankfully, the ulcer thing has been looking BETTER! And when I pulled off my bag today, it looked even better than it had a few days ago! It looked so good that Dr. Saturday decided that he didn't even need to do anything to it right now! He said he was a little disappointed, because he had this new great plan for what to do with me, but he didn't get to carry it out. ;) If the wound does get worse again, though, he'll inject it with steroids.

Dr. Saturday told me that he thinks that I actually have Crohn's, not ulcerative colitis. Ya know, all the doctors have gone back and forth on the Crohn's vs. UC thing with me, but it was still a bit of a shock to hear. Dr. Saturday said that I've never really gotten better, even without my colon. I also have so many "extra-intestinal" manifestations, and all these weird issues that are more associated with Crohn's than colitis (abscesses, fistulas, these ulcers...). Anyways, he thinks it all adds up to Crohn's.

He thinks that the ulcer has improved over the past few weeks since I've been on a higher dose of steroids. I was supposed to start tapering back down to my normal dose of steroids over the next several weeks. Dr. Saturday told me that he wants me to taper much more slowly than JP Dr asked. He told me to call JP Dr and tell her that he now thinks I have Crohn's, and ask if it's okay if I taper more slowly in order to help the Crohn's wound/ulcer issue heal.

I called her, and she said, "I'M fine with you tapering more slowly, but it's your endocrine doctor who's won't like that." Endo Doc wants me to be on 1/3 of my current steroid dosage, and she is really not a fan of using steroids for my autoimmune issues. I think sometimes she forgets that there are times when steroids are the best choice for treating chronic autoimmune inflammatory conditions. And we've also proven that my body doesn't follow the normal rules, and so sometimes, for whatever reason, my body needs a hefty dose of steroids just to function normally.

Speaking of functioning... I have been, like, actually functioning again! After a few weeks of sleeping close to around the clock, I'm starting to have more energy and stamina, less shaking and dizziness... it's fantastic! I am still having a lot of trouble over the weekends from the Methotrexate shots, but otherwise, I'm doing a lot better overall! In fact, Tuesday was the best day I've had since before being in the hospital in May! I can feel my body starting to regain some strength. Praise God! I am SO thankful! I am starting to heal and finally feel like myself again.

Hannah ;)

Monday, September 10, 2012

Surgeon, Pain, & Steroid Updates

What is going on in there?
Thankfully, the CT scan didn't show any major issues - no abscesses! Yay!!!! Dr. Saturday did confirm that the pelvic pain and other symptoms I continue to experience are abnormal and concerning... but despite repeated testing, cultures, exams, empirical treatment with antibiotics and antifungal and anti everything meds, and even open abdominal surgery, Dr. Saturday, Dr. Professor, and the Urogyn Dr have all come up empty as far as a definite cause of or resolution for my symptoms. Dr. Saturday said he just has no idea where to go from here, but at least there isn't something that dramatically needs fixing, as far as they can see. A bit disquieting for all involved, but I guess that's medicine, sometimes.

What were VSL#1 and #2??
My tummy stayed rather upset for several days following the CT... I guess my system is just really incredibly hypersensitive to the contrast or something! Silly tummy. Also, since my surgery, I've been having to get up at night to empty my bag 2-4 times per night. I used to rarely get up at all, so this was quite a change. I thought this was due to losing a few more inches of intestine during my surgery, but Dr. Saturday thought this is more likely due to all the antibiotics and antifungal medication I was on this spring and summer. Since I'm having an upset tummy plus the nighttime issues, he wants me to do a course of the infamous VSL3 probiotics for a few weeks. 

Dr. Saturday ready for action
The weird growth in the wound around Squirt has returned. It's a finger-like projection just to the side of Squirt - it almost looks like a little tiny baby stoma. Dr. Saturday was very interested in and befuddled by the anomaly. He said it could be IBD on the skin, or an allergic reaction to whatever kind of stitch he used there, exacerbated by my body's autoimmune inflammatory reaction to... basically everything. Since it won't go away, and since he doesn't know what it is, he wants to follow the surgeon's mantra ("when in doubt, cut it out"). So... I'm having a little surgery in about 10 days. He wants to excise the little "finger" and surrounding wound area, and he will either stitch the area shut or let it heal from the inside out (words that send an involuntary chill down my spine - you may recall I had a surgery that was left to heal from the inside out, which resulted in 80 days on a WoundVAC and 9 months of an open wound). Thankfully, he told me that he could do this procedure in the office if I wasn't too squeamish. I'd do just about anything to avoid going to the hospital and getting put under, so I was glad to hear that.

I saw Jack Black (Dr. Pain) on Friday. It was a GOOD visit - honestly, my pain is the best controlled it's been since I started needing to see a pain doctor. Words are inadequate to express my gratitude and thankfulness for this! It is unbelievably good and happy to NOT be constantly trying to push down this ever-gnawing pain that's a hair's breadth away from breaking loose and becoming uncontrollable. Since spring of 2010, I've needed medicine to help me fall asleep and stay asleep through the pain. In the past weeks, I've been able to come completely off of this medication and have rarely woken from pain. I received the green light to start tapering off another anti-depressant pain med I've been on for several months - I don't really feel like it's done a thing for me, and I'm all about cutting unnecessary meds! Once I'm completely off of this med (which will take 6+ weeks), I also got permission to experiment with tapering to a lower dose on another scheduled pain medicine. I am very excited that God is causing my pain to decrease, and that I'm able to try to get off some more meds!

I love Google images! So random.
JP Dr, my rheumatologist, had me experiment with my steroids last week. I went up to double my normal dosage for three days, went to 1.5x normal for 3 days, then back to normal. Sure enough, I felt like a different person after a few days on the higher dosage. Instead of being unable to sit up for more than a few minutes due to dizziness, I could stand up and have a conversation! Instead of 15-16 hours of sleep, I could get by with 12 (Okay, I know that's still quite a lot of sleep, but hey, it's improvement)! The tremors in my hands, intense salt cravings, and sensation of racing heart decreased quite dramatically. It was great, and I enjoyed some of the best days I've had in weeks!

On the first day of being back on my normal dose, I noticed I was really shaky, and the following day was even worse. Since going up on the steroids helped, JP Dr decided that I should go back up to the double dosage again for a few weeks, then try to taper down again, but v-e-r-y slowly. She said she was very concerned with how I looked the last time I saw her (I may or may not have almost passed out in her office...). She said she's not sure if it's because of my adrenal issues, my POTS/dysautonomia issues, or an autoimmune flare-up (or a combination of all these things), but it's clear to her that I do need more steroids right now. So back up I go.

My feelings go back and forth... sometimes I'm frustrated and sad that I still spend most of my days in bed, that many days I lack the stamina to get dressed, much less leave the house or work a full-time job. Other times, I feel such excitement and happiness over improvements I see in my health - much less pain, or a day when I have more energy than usual and can get up and accomplish small tasks. It's just a reminder to me that contentment and joy are NOT factors of circumstances. They are a choice, an attitude. Through Christ, it's possible to be content in the most impossible situation (Philippians 4:10-13). I can't allow my emotions or my circumstances to dictate how I act or think or talk to others; rather, I must allow the love of Christ to control me. 

Hannah ;)