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Friday, July 30, 2010

Twitchy-ectomy

Well, I'm still here...haven't even tried to escape yet, so you KNOW I'm sick! ;)

Wednesday night was incredibly rough and almost entirely sleepless. We spent until yesterday afternoon trying to get the pain back under control. After changing meds around and giving them some time to work, I started feeling much better.

GI Dr's nurse (who is awesome!) came over from clinic to visit me and bring me my Superwoman shots - it was fun to see her! Gooo Humira - die, inflammation, die! ;)

Dr. A came by, and we had a rather epic conversation, so get ready. He told me that, although they haven't been able to see anything on tests, based on my history and symptoms, I am definitely having obstructions due to scar tissue from surgery. Surgery to "fix" scar tissue adhesions is not very successful, but because of the frequency and intensity of my symptoms, it's time to try anyways.

We also discussed Twitchy's future. Dr. A is open to doing the takedown surgery (connecting me to Twitchy), but I'm just not willing to have a surgery that will probably make me sicker. I would have to be treated for pouchitis for the rest of my life. I would be choosing to have a medical lifestyle full of scopes and meds and doctors. The reason I had surgery in the first place was to try to get healthy and get away from doctors and tests and treatments. At this point, there's NO guarantee that taking out Twitchy would help my arthritis and other problems, but it's almost for sure that keeping him IS going to continue to make me sicker.

Dr. A agreed that I've suffered enough and that taking the J pouch out is the best option. Unfortunately, surgery to take out the J pouch is considered very radical and massive, as well as being technically difficult. It's very rare for a J pouch to "fail" and need to be taken out (less than 5%). Of those 5%, nearly every single person is someone who's been "using" their J pouch for a while, so they don't have an ileostomy. So I'm getting a very rare surgery (J pouch removal), plus my intestinal anatomy is quite different from nearly everyone who has had this rare surgery. Go Hannah!

The plan would be to combine the J pouch removal (I'm gonna call it a "Twitchy-ectomy") with surgery to fix the scar tissue adhesions. To do the best job possible of freeing up my intestines, they can't do this surgery laparoscopically. They'll have to really cut me open, boo. Anyways, they will cut me open, get rid of as much scar tissue as possible, and carefully remove Twitchy. Dr. A will create a permanent ileostomy (Squirt and Hannah, together forever), then put a special mesh in my abdomen that is supposed to help prevent more scar tissue from forming. We don't have a date for surgery - and it doesn't need to happen this week or anything - but I will have it done, Lord willing, in the near future. Dr. A wants me to take this recovery more seriously - I'm supposed to spend 4-6 weeks convalescing - no walking a mile to school three days after hospital discharge like last time. ;(

Rheumatology also came by to talk to me. We are extremely limited in what medicines I can have to treat the joint pain and inflammation. There's talk of adding in methotrexate, which works really well in combination with Humira. Only downside is that it would take 6-8 weeks to kick in, which is a really long time to wait if you can't sleep because you're hurting so much. Hoping they can come up with an "in the meantime" plan that does NOT involve more steroids!

My stomach is doing better - I've been having a little trouble with it today, but overall it's been a lot better since I've been here (go figure) and I've been eating again! Unfortunately, I'm still having a lot of joint and muscle pain, despite all the drugs, and Twitchy is not doing well at all. Hopefully the antibiotics plus the Humira will kick in! I'm kinda just stuck here until we can get my pain under better control.

Thank you all for all your prayers and support! Please continue to pray for strength and perseverance and wisdom! I'm struggling a little with discouragement. Today I stated thinking, "I'm just so ready for this trial to be over and to get on with my life." But really... I know that "getting on with my life" is probably NOT what brings God the most glory. His power is perfected in weakness (II Corinthians 12:9-10). When I am broken and dependent on Him, His love and grace shine through so much clearer. Pray that my attitude in all this will bring honor to God!

Hannah ;)

Wednesday, July 28, 2010

Wednesday Update

Thankfully, we were able to get the pain under control this morning (read: everyone gets to watch Hannah get totally stoned every two hours), so I napped and probably drooled and visited with some lovely ladies who came to hang out! Also had quality Mama-Hannah time, which I treasure. Again, I have been blessed with awesome nurses (LOVE this floor), which makes a huge difference. Shelly and Danny, y'all rock! I started feeling really crummy again this evening, but I'm hoping to be able to sleep tonight.

We hoped I'd be able to get outta here today, but looks like I'll be here through at least tomorrow night. Tomorrow I will talk to Rheumatology - we need to get rid of my inflammation to get my pain levels at a more reasonable level... without doing steroids. The surgeons and GI doctors also need to put their heads together and reach an agreement about what to do with Twitchy and how to treat my stomach pain. They have different ideas about what the best course of action is. What really needs to happen is for the teams to talk to each other. They both have a lot of knowledge, so we'd like them to work together as one team, and find the path that will give me the best quality of life.

I'm starting back on a few meds for pouchitis. This was the combo that seemed to do the trick for awhile this spring. I'm also going to do not one, but TWO Superwoman shots tomorrow. So then I can probably save on gas and wear and tear on the car by using my super powers to fly home if they let me out tomorrow night.

I sound like a broken record... but we'd really appreciate prayers for patience and wisdom, both for us and for the doctors. Please pray that Christ would continue to be the focus of my heart! I feel really terrible because we were supposed to go on vacation this coming week. Due to my health, my family had to cancel. They are super gracious, but I'm sad that my issues have yet again changed everyone's plans. I have to remind myself that God knew this would happen, and so that means that He has something better in mind for us this next week.

Hannah ;)

RE-Resetting the "Hospital-Free Days" Counter

So, I'm back at my home away from home... My pain just continued to escalate, and I kept having obstruction symptoms, so I went to the ER yesterday afternoon. Of course, by the time they ran tests, the stomach symptoms were settling down, so once again, all the test are negative. My poor little body is just in so much pain from whatever's goin' on in my stomach, the pouchitis, the arthritis, and muscle stuff that I can't stop shaking. Despite some pretty hefty drugs, the pain is still pretty out of control, so they admitted me primarily for pain management.

I've been very blessed. Andrew took me to the ER and waited patiently for a loooong time. Kari came and was so encouraging and uplifting and a great "distraction" from feeling bad. I've had wonderful people taking care of me, from the radiology people to transport people to my incredibly attentive nurse, doctor who's changed my meds about five times today to try and find a winning combo, and a pharmacist who has stopped in multiple times to make suggestions for how to manage the pain. We're finally starting to make some headway, thankfully, but I still can't sleep. My sweet mommy is here with me, and I'm so thankful. I just need her. Since the nightmarish pain management fails last October from my surgery complications, I get a little freaked when I'm in the hospital and they can't get on top of the pain. It's a blessing to have her here to take care of me and keep me calm. My daddy has the worst end of the deal - he is getting to play logistics manager - trying to clear up some insurance drama.

Tomorrow the GI people are going to come in and try to figure out what to do about the intermittent stomach pains and the pouchitis. Please continue to pray for wisdom for my doctors and family. We are all perplexed and frustrated by how badly I'm doing and with the lack of answers. Something needs to change - my body cannot continue on in this much pain and without being able to eat, drink sufficiently, or sleep. Please pray that my testimony would be clear - that the same God who died for me and saved my soul is in control of this situation! Please pray for encouragement and patience for my parents especially.

Hannah ;)

Monday, July 26, 2010

More Fluids

I had my endocrine doctor appointment this morning. I'm super thankful for her. Even though she can't exactly pinpoint why I'm having so many issues, she was really determined to do something to help me feel better today.

She thought I didn't look too good. My stomach was really bothering me and I was beginning to get shaky and sweaty. So, we decided I should get IV fluids before I left the clinic. We had hoped to decrease the steroids again this week, but too much is going on to make that kind of a change right now. Unfortunately, after bragging about how great I was doing, the last few days have been totally unsuccessful in the pain management and sleeping department. She is back to thinking that the weird episodes are precipitated by my nervous system freaking out from when my pain gets out of control, and is complicated by my difficulty in staying hydrated. This makes some amount of sense, and Dr. Pain had suggested something similar.

The doctor was also concerned about my how frequently I'm having obstructions, the fact that I have not been eating well, and that I can't maintain a fluid balance. She is communicating with my GI doctor about the best way to handle this. She thinks I need surgery to fix these issues. The only problem is that surgery will cause more scar tissue, which could cause more obstructions in the future. But we all agree that something needs to change, as it's not healthy for me to continue just living with obstructions and dealing with them from home. So the next time this happens, I am supposed to check in to the hospital.

But - this afternoon, my stomach started feeling MUCH BETTER! I've been able to EAT real food! This hasn't happened for a few weeks, so I'm super-duper pumped! ;) I truly hope this means that the obstructions are gone for good and it will be clear sailing from here on out!

I also need to let the GI doctor know that it's time to add in something else for the pouchitis. It has really flared up again over the last few days with lots of bleeding. I know he wants me to increase my Humira dosage, but I'm hoping he'll agree to first try an antibiotic cocktail that worked in March. I'm hoping this will also calm down my joints and fever, which are flaring with the pouchitis.

The fluids were helpful, and brought me back from the brink of disaster... just kidding... ;) But I felt better, stopped shaking, and my blood pressure went up and heart rate went down after the IV, which is good.

Please pray that I can get the pain under control so I can sleep (and not freak out my nervous system, haha)! Also that I can start a good treatment for the pouchitis, and have a safe plan for staying hydrated and managing the obstructions.

God started convicting my heart yesterday about some stuff... lately I have been allowing my (admittedly frustrating) circumstances to define my mood and thoughts and reactions. I was thinking about Paul's reaction in Philippians 1. Paul was writing from prison. He was honest about the fact that he was in prison, and knew he was probably going to die soon. His attitude about his circumstances, however, related only to how they were allowing him to minister and spread the gospel. He was defined not by his situation, but by his God. May I strive to be the same way.

Hannah ;)

Thursday, July 22, 2010

Resetting the "Hospital Free Days" Counter Back to 0

Well, it was a great run - no hospital since May. Then last night, I wound up in the ER. Oops. Yesterday evening, I was doing okay-ish, still shaky and stuff, but okay. Then I tried to stand up. It didn't go over so well. I had promised the endocrine doctor that I'd go to the ER if I got worse, and GI doctor had just lectured me on not allowing myself to get overly dehydrated, so... it was time. My stomach also started killing while I was there, so I also got some lovely shots of pain and nausea meds. My head felt much less "fuzzy" after some fluids, and I told the doctor that I was okay, so I got to go home.

I had also promised to call the endocrine doctor in the morning. Our phone conversation was frustrating. She is totally at a loss for what might be causing me to have these episodes. She suggested doing some tests, but they're ones we've already run. She just kept saying, "There's no way that this is an endocrine problem." She said maybe it was just dehydration, but I had been even more dehydrated last week without having shakiness or sweating. Unfortunately, she is out of ideas for what it might be. When I asked her for suggestions on what to do if I have another episode, she told me that I need to call her earlier in the day (I called about 4 pm yesterday) so that she could see me and give me fluids in the clinic. I told her that I'd be sure to time my symptoms with office hours in the future. ;)

Today I also had my Pain Dr appointment. I was sorely disappointed... they were running behind, so instead of seeing Jack Black, I got seen by his associate, Skinny Guy. He was very nice, but I would much rather see a doctor I know. Things are actually going better in the pain management department these days. I've been able to back down to a lower dosage of my "sleepy medicine" at night, and I'm still sleeping well! I'd love to get off it entirely, but I don't think that will happen anytime soon. The muscle relaxants we added last month have helped the muscle pain tremendously, and the joints are becoming less inflamed (from my Superwoman shots, I think), and therefore less painful. Overall, most days, the joint and muscle pain is under better control. Unfortunately, my stomach and J pouch have been a lot worse lately, but I can deal with it.

I'm feeling better since the fluids, which is great. My stomach is so confused right now. After a week or so of not emptying, today it started dumping. I just don't understand! It's crazy! There's no logical explanation for that at all. But it calmed down eventually, and at least I'm hungry again, so I've been eating! And of course, I bragged about how good my joints were doing, so they started acting up this afternoon. They're the most stiff and achey they've been in quite a while, and even breathing hurts a lot. I took my big-gun magic anti-inflammatory pills a little while ago... hopefully that will cut down the swelling and pain a bit.

Please pray that I will be able to stay hydrated at home! Please pray for wisdom for my family and I to know the best courses of action - for the little day-to-day decisions and also for the big decisions. My doctors are frustrated and at a loss... and so are we.

Hannah ;)

Wednesday, July 21, 2010

Not Even the Snoopy Shirt Helped

I have a couple awesome shirts. You know, like the one with the condiments bottles that says "Relish today. Ketchup tomorrow." The Mighty Mouse shirt. The Wonder Woman shirt. And the Snoopy shirt. People also keep telling me that I'm so cute and look so young. Maybe it's time I stopped dressing like a 10-year-old. But I LIKE my awesome T-shirts! They make me happy. But today, not even the Snoopy shirt helped. I had my GI appointment. It was sad. GI Dr said "You are such a mystery" four times by my count... I'll confirm with my mom, who went with me.

Because my pouchitis is not going away even on Humira, he advises that I get Twitchy removed and have a permanent ileostomy. While that does not make me happy and thrilled, I have to agree with him. Even when I was pretty much asymptomatic from pouchitis in April and May and early June, my scopes still showed inflammation. That means that the pouchitis is simply not going away. So, if we did surgery to reattach me, I'd get even sicker - I'd feel like I had UC again. And I'd be married to the drugs, treatments, scopes, and doctors like a 19th century woman - stuck for the rest of my life with no hope of ever getting a divorce. ;) There is a (slim and absolutely not guaranteed) chance that even the arthritis might go away if Twitchy went the way of my colon, because it's possible that the inflammation in Twitchy is setting off the inflammation that's wreaking havoc on the rest of my body. There's no rush to take Twitchy out, which is good, because I'm STILL not close to being off steroids. If the pouchitis continues to get worse, we will up the Humira (do a few rounds of two shots, instead of just one) for a bit.

He felt my joints and thinks they're swollen. I think he's nuts. They are the least swollen they've been in months, yay! He did say that the type of arthritis associated with Crohn's disease and ulcerative colitis usually does not cause erosion. That means that it while it hurts a lot and causes a lot of inflammation, my body is NOT eating away at my joints, which is truly excellent to hear.

As far as my stomach pain... he thinks that I am indeed having transient obstructions - obstructions that go away on their own eventually. This is from scar tissue that formed from surgery. If/when the obstruction happens again, he told me I need to take it more seriously and go in to the ER to at least get fluids. He's concerned about doing damage to my kidneys because I'm chronically dehydrated. He said riding it out at home like I've been doing is not good. It gets dangerous really fast if I'm not able to drink much. There is really not much that can be done for an obstruction - they would just keep me hydrated and wait and hope it goes away. If it were to not go away after a few days, they could do surgery, but that would just cause more scar tissue that would cause more obstructions later. So hopefully this won't keep happening...

And finally, the stomach not emptying thing. It's called gastroparesis. This was one of the (many) times when he sighed and said I'm a mystery. Just a few weeks ago, I was dumping - stuff was moving through me so quickly that my pills were coming out unabsorbed! Now, nothing is leaving my stomach for hours. This does explain why I'm so nauseated. But it makes no sense that my stomach was working too fast, and now it's working too slowly. Gastroparesis usually comes on sort of gradually, not all of a sudden. He gave me some medicine to try to help with nausea and that is supposed to help my stomach to empty. I'm still hoping that this will resolve on its own.

Then... to top it off... I started feeling shaky and dizzy and sweaty and stuff this afternoon. I had been doing so well!! Bummer! So I took my blood sugar and called the endocrine doctor (I didn't say "I told you so," but, surprise -- my blood sugar was normal) . If I keep feeling bad, she advised me to go to the ER tonight, but I'm okay-ish, so I will wait it out. This has happened a million times and I've never died yet! ;) If I still feel bad in the morning, I will have to go see her. We are basically out of ideas for what causes these weird episodes. She strongly feels that it is not related to the adrenal stuff. I don't know what else it could be, but I understand that it's really not a straightforward situation at all.

I'm a little frustrated by everything today. I know I have a lot of health issues and that I'll probably have to deal with them to some extent or another for the rest of my life... it's just discouraging to be reminded of all that! I just have to be sad for a little while... and then remind myself of what I know is true. While I may be a mystery to the doctors, the God who made me knows exactly what's going on, He allowed it to happen, He's in control of this situation, and He will work it for His glory and to make me more like Him. Our family's been doing a Bible study together. Last week we talked about the attributes of God - what He's like. Sometimes, situations are just plain bad. There's simply nothing anyone can say to make it better that doesn't sound trite. But knowing that God is sovereign, knowing that He is merciful, knowing that He is all-powerful brings me comfort. I don't understand, and I my initial reaction to days like today is not always God-honoring... but I'm thankful that He doesn't change, that He is forgiving, and that His love for me is not fickle. It does not change based on how I act or don't act... or depending on what shirt I wear. ;)

Hannah ;)

Monday, July 19, 2010

I'm OK ;)

Well, let me start out by saying that I'm okay... I am NOT in the hospital. ;)

So... there was a little miscommunication by the doctor, so I didn't end up having the tests until Friday. The PA told me that drinking was my stay-out-of-the-hospital ticket... so I drank... but she forgot to mention that I had to be NPO for several hours before the test, so they wouldn't X ray me on Thursday.

The pain has been coming and going, and it was better by Friday morning when I had my tests. Which is good, of course, but also a little frustrating in a weird way. They think I have scar tissue or something causing obstructions, but whatever was going on resolved itself, so nothing showed up on the X rays.

My guts, as far as they can see, look healthy, which is great! They also did some live video X ray of my stomach in action, which was very very cool to watch! They did find some new issues, which is very frustrating. Basically, my stomach is not emptying properly - it stays full way too long. Once it does empty, everything travels from my stomach to my bag in literally a minute or two (which may not mean anything because the dye is supposed to go through you quickly). The doctor was concerned about the slow stomach emptying, but I think it was nothing. They made me drink stuff that made me feel sick, so of course my stomach was kinda freaking out. My stomach felt absolutely terrible until Saturday from the contrast I had to drink.

My stomach still feels pretty messed up, and I had a lot of pain on Sunday again. But I don't think there's anything wrong with my stomach - it's probably still just upset from that yucky stuff I had to drink! It does concern me because it hurts like it used to before I had surgery. Please pray that whatever's going on will resolve! It's bad for me to have problems with my stomach because I get dehydrated so easily if I'm feeling poorly. I'm down about 6 lbs from this week of feeling nauseated and hurting - probably a lot of that is lost water. This quickly becomes dangerous and sets off my adrenal problems and everything else. Please pray I can stay hydrated and that my guts will start working right!

Twitchy is getting more and more angry. I see the GI doctor on Wednesday, so we'll be discussing all these issues, I'm sure.

In good news, I've done two weeks now at the slightly lower steroid dosage, and I've only had one day of feeling shaky and dizzy. For the first week, I was totally wiped out, but now I'm feeling much more like myself. Yay! Also, my joints are becoming much less stiff, which is great! I can open jars and stuff. ;)

Thanks for all your support and prayers! This week had the potential to turn out quite badly - like emergency surgery - if the tests showed a big problem. Praise God that it was nothing really bad!

Hannah ;)

Wednesday, July 14, 2010

Here We Go Again

So, I think I mentioned a few posts back that I'm struggling again with some stomach pain. Since the weekend of July 4th, I've been off and on really nauseated and having intense stomach pain. It eventually goes away, and it kept happening over weekends, so I never called my doctor or anything. But... Monday I started feeling bad again, and it didn't go away. By last night, I felt terrible, and today, I felt even worse and couldn't even drink water.

So, GI doctor was called, and this evening, his PA called me back. She asked if I wanted to go to the hospital (clearly she doesn't know me well). Since I declined, I have to go in for some X rays and blood work tomorrow. Given my history, they are concerned about an obstruction or pancreatitis. I'd really prefer to NOT have EITHER of those, but I hope they can find out what's wrong and fix it. It's been frustrating to have to deal with being so sick off and on with no clear explanation as to why I feel so crummy.

I was allowed to stay home tonight on the condition that I drink a lot, and keep it down. I'm really dehydrated (since I'm missing half my guts, I can't afford to stop drinking for even a few hours), but my mommy filled my Zofran prescription - have I mentioned how much I: 1) love my mom, and 2) love Zofran? - and therefore I started feeling much better, and I'm drinking and hopefully staying out of the ER tonight! ;) Yay!

Please pray that the tests tomorrow will allow the doctors to pinpoint what's going on! And that we would have wisdom to know the best thing to do. At this point, I am truly weary of "fighting" this battle, but I trust in a God who is good all the time and who doesn't allow anything to happen by accident. I know He made me, and just as He saved me from my sins when I was His enemy, just as He allowed me to come through a major surgery 9 months ago today... I know He'll continue to work in my life for His glory.

Hannah ;)

Monday, July 12, 2010

One Year Ago: Flashback to the Beginning of the Final Flare

In one day, I went from top of the world to a minor panic attack.

I ate popcorn. I ate Chick-Fil-A (it was free; my brother and I had dressed up like a cow and received combo meals as a reward). My stomach still hurt a bit sometimes, but not too much. I was in remission. I was "managing" my UC. I was working, going to school, hanging out with friends, back into life. I wasn't missing out on anything. Then, that day a year ago, I went to the bathroom... and there it was. Blood.

My mind raced. No, this couldn't be a flare. This was totally a fluke; it was the popcorn; it was nothing... I went on with my day, and soon convinced myself I had imagined it. I felt totally fine, no pain, no cramps, my appetite was great. But in the back of my mind, a small fear began to grow.

Unfortunately, I had not imagined the blood. It continued, and grew worse. But it still wasn't bad. I didn't really feel sick. I had an incredibly weird arthritis flare where one minute, I was walking, and the next minute, I was on the floor, scratching my head. My legs simply could not hold me up. A few weeks of a wee bit of prednisone (compared to the amount used to treat my UC) did the trick and I soon my legs were working again and my massively swollen joints eventually shrunk back so I could again see my kneecaps. But the bleeding continued. I finished out my summer class. I finished my summer job.

In August, the one-year anniversary of my near-death experience with a horrible flare plus pancreatitis passed. I marked the event with thankfulness, noting how far I'd come since then. See, maybe I was flaring yet again, but I wasn't horribly ill. I was still eating, mostly, and I was managing. I was functioning. Alas, I'd spoken too soon. A few days later, I found myself in the ER, throwing up and massively dehydrated.

A few days of fluids, pain meds and nausea meds and I was back on my somewhat unsteady feet. We all knew this was just a "Band-Aid" fix - nothing was done to bring the flare-up under control. They discharged me and the next day I packed up my car and moved into my new apartment. The following day, I started the fall semester. Note to self: any semester that starts two days after you get discharged from the hospital with unresolved problems will probably not turn out so well.

The semester continued, and it became apparent that I was not doing so hot. I wasn't terribly ill, and the flare-up was progressing quite slowly, but I knew I was reaching the end of the line. They doubled my Remicade dosage and I planned to get infused more frequently. This was pretty much my last hope, and I knew it wouldn't work forever. After a scope that revealed a sick, ulcerated colon, my GI doctor and I had a long, long appointment that concluded with a referral to Dr. A, the surgeon. My colon's days were numbered. We decided that the best plan was to wait until the end of the semester, then have surgery over Christmas. We discussed how important it was to do the surgery when I wasn't on steroids, when I was well-nourished, and when I wasn't flaring.

A few weeks later, though, I was much worse. I couldn't eat, I couldn't sleep, I was bleeding like mad, and I was in a ton of pain. GI Dr gave me two choices: get admitted for IV steroids, or tough it out at home on oral steroids. Guess which one I chose? ;) The first day on steroids, I sat on the couch crying as I tried to force myself to eat something. You can't take that much steroids on an empty stomach, as they are very caustic. After two bites, I had to run to the bathroom. I was so sick. I was having such intense stomach pain. I went to the student health center, where the concerned doctor strongly suggested the hospital as a potential solution. I declined... they gave me stronger pain meds.

Then... I got the swine flu. I'm not kidding. Oh, yeah. Fortunately, I knew what I had, and within a few hours of falling ill, I started antivirals, so it wasn't a horrible experience or anything. My stomach condition just continued to deteriorate. The massive dose of steroids made me want to munch on food, but putting anything in my mouth resulted in so much pain and sickness... it was hysterical. I'd stand there, staring at all the food in the cupboard, take some out, stare at it, decide it wasn't worth it, put it away, close the cupboard, walk away, walk to the fridge, open it up, take out some food, stare at it, put it away... hopefully no one was watching me! ;)

I'd be up all night pooping my guts out. I wasn't really eating, so I had no idea how it was possible to have this much diarrhea. Finally, one morning, I was so dehydrated that I was slurring my words. This typically is not a good sign. So my roommate took me to the doctor. After some IV fluids, I perked up a bit, but by this time, my GI doctor had been called. The steroids were a last resort. And they weren't working. It was time. I was getting admitted. And I'd be leaving without my colon. And so I embarked on this journey as a semi colon...

Hannah ;)

Thursday, July 8, 2010

So... Tired...

Dun dun dun... I am on day 4 at a slightly lower steroid dosage, annnnnnd: I am surviving it! ;) No dizziness or shakiness! This is impressive. Since the end of April, I haven't been able to do even two days in a row at a lower dosage without feeling like death.

The bad news is that it is making me completely exhausted. Like, sleep 14 hours a day and still feel totally zonked exhausted. Eh, whatever. Maybe, just maybe, I will be able to get off steroids eventually! If I am able to continue at this rate (going down a bit once a month), I could be off them in as little as 7 months. Sigh. That's a realllly long time.

Endocrine Dr called me today to go over labs. Her optimism that whatever's wrong with me isn't from steroids is cute. So, my blood sugar is still running low, so now I get to have my own meter and stab my fingers whenever I feel crummy to see if there's a correlation between the shakiness and dizziness and low blood sugar. Which I might believe, except that my symptoms don't improve when I eat or drink. But the nice doctor lady wants me to try, so I will document blood sugar, blood pressure and pulse for her so we can hopefully get this mess figured out.

Sorry my life is so incredibly boring these days that there's really not much for me to say... mainly I just lay around and sleep and stuff. I'm bored, but I really don't have energy to do much else. I'm trying to be content with this and just rest in what God has for me right now. Some days that goes better than others.

Please praise God with me that the steroid taper is going well so far this time... and pray that my body will continue to tolerate it (hopefully with me gaining a little more energy). Also please pray for me, that my attitude will be honoring to Him!

Hannah ;)

Monday, July 5, 2010

Roid Rage Again

I had my endocrine doctor appointment on Friday. It seems like I'm getting too much steroids based on certain things (my "moon face," acne, etc), but, it also seems like I'm not getting enough at times, based on my other symptoms (shakiness, dizziness, fast heart rate). We think that some of the problem is that I don't consistently absorb all of the medicine. The dose I'm at is more than twice what a normal adult male needs... so WAY more than I should need. So when I absorb it all, it's too much, but if I don't absorb it well, I'm not getting enough. Either way, it's terrible for my body. The plan is to split up the dosage into three times a day instead of two. This way, even if I don't absorb much, I have more chances to absorb some. And hopefully I can taper off more easily if I'm getting some steroids three times a day. If this doesn't work, I will have to look into giving myself shots of steroids every day. Which would be okay if I got the huge muscles... ;)

I was a little frustrated because the doctor doubts that my symptoms - the shakiness, dizziness, dumping, etc, which have been making a comeback for the last week or so - are actually caused by too little steroids. My labs and tests don't seem to indicate that I'm low on steroids, and when I "crash," sometimes taking more steroids helps, sometimes it doesn't. I understand what she's saying, but I don't know what else could be making me feel so bad (neither does she). And I know for sure that every single time I cut back, I feel worse. She told me that I have to keep tapering off, regardless of how bad it makes me feel. If I do crash as I taper, I'm supposed to page her so she can see me when I'm crashing. This could be fun.

Honestly... I want more than anything to be off steroids. I never wanted to go on them in the first place back in September. I only took them because my choices were essentially: bleed to death, do IV steroids in the hospital or do high-dose oral steroids at home. I opted for the oral steroids after some deliberation. ;) Anyways, I've always hated being on steroids because they make me crazy emotional and I feel horrible when I come off them. I've always had a hard time tapering off, but never anything that compares to what I've gone through this time. Every time I have gotten off steroids, I swear I'll never take them again. I guess my resolve this fall wasn't firm enough, haha.

I'm still feeling kinda crummy. The rainy weather is doing a number on my joints and I'm having issues again with blockages or something. I think it's from scar tissue. Just really hurts when I eat. I'd appreciate prayers for wisdom to know if it's bad enough that I should call the doctor, although there's not much they can do about it.

Please pray for my body to respond well to the new 3x/day steroid plan, and that I will adjust as I decrease the dose a little bit this week! I need to be able to taper down quite a bit before we can even tell if my body is still able to make its own steroids.

I'm trying to navigate the murky waters of health insurance... thankfully, it looks like I can extend my student health insurance through next summer! After that... I'd rather not think about it! I'm also looking for a job starting this fall. Please pray for me as I try to figure out what I'm capable of doing and that God will lead me to just the right job.

Hannah ;)