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Wednesday, March 31, 2010

Humira and Dr. Pain

Well, today has been interesting...

After much deliberation and consideration, we've (GI, Dr. A, family and I) decided to start Humira (if my insurance company okays it, that is), a biologic therapy that will calm down the inflammation in my body. We tried many other things, considered several other options, but at this point, for many complicated reasons, we need to give this a shot (You should laugh here. Humira is given as injections).

The benefit of Humira is that hopefully we will know if it's working after just a week or so. Also, it should help my whole body to have less inflammation - so less fevers, less joint pain and stiffness, less fatigue. And that would be wonderful!

Also... today TCU Dr set me up with a pain doctor. I still am not sure why you would say this - but his intro was, "Hi, I specialize in pain."

I told him I was disappointed - I was hoping to meet a doctor who specialized in getting rid of pain. ;)

He was amenable, and talked to me for over two hours! He was extremely helpful and practical. Made some really excellent observations and suggestions, and laid out about a million different things I could try to help me function better, from different medications and patches and shots to lifestyle stuff. I'm not really willing to try any OTHER new meds or anything at this time, for obvious reasons, so he gave me tips on how to get the maximum benefit from my current meds so I can function better, as well as suggesting some supplements to help my body out.

He gave me a lot of hope that there is a lot of stuff out there that can be done to help me get healthier and more functional again. He thinks (well, we all do) that my issues are complicated and amplified by the adrenal stuff, which is definitely NOT under control right now. Reallllly wish Endo Doc would return his phone calls, but that's another story. Dr Pain's primary concerns were very down-to-earth, practical things like: "Can you get through the day? How do you feel? Can you sleep? What times are worse for you? What do you want to be able to do?" It was very refreshing. Not that my specialists don't care, because they definitely and absolutely do, but they tend to get caught up with symptoms and lab values and pathology reports rather than on how I'm functioning. It was very encouraging to talk to someone who "gets" that I just want to live life... and wants to help me get there. ;)

So, I'm off to buy some supplements he suggested. I feel very encouraged that there are options I can pursue so I can feel good! And that there are some practical, easy things I can try to help myself function better.

Please pray that the insurance company will approve Humira - and approve it quickly and easily! Getting Remicade approved took quite some time, and the insurance company really made everyone's life tough each time I got an infusion. I am incredibly thankful for the insurance God has provided through TCU - I didn't have insurance til college, so how blessed am I that I didn't get sick til then? Pretty cool how God has used the insurance to provide for all the care I've required the past few years.

Also - Julia's home! :) Yay! Last I heard, she's been having a lot more pain now than when she was in the hospital. Please keep her in your prayers as she enters this yucky adjustment period with her J pouch. Her faith in Jesus is so strong and pure. I am so confident that she will keep doing great and adjust super quickly!

Hannah ;)

Sunday, March 28, 2010

Psalm 22

I'm feeling a bit overwhelmed with my health. It was very disappointing to be in the hospital and still not feel better or get any real answers about the episodes I've been having. I'm out now, but physically, I feel worse than when I went in.

One of my sisters in Christ posted a passage of Charles Spurgoen's commentary of Psalm 22 on Facebook, and it really spoke to my soul, so I wanted to share it:

Meditations on the Passion of the Messiah

"v.1:“My God, my God, why hast thou forsaken me? This was the startling cry of Golgotha: Eloî Eloî lama sabacthani! The Jews mocked, but the angels adored when Jesus cried this exceeding bitter cry. Nailed to the tree we behold our great Redeemer in extremities, and what see we? Let us gaze with holy wonder, and mark the flashes of light amid the awful darkness of that midday-midnight. Our Lord's faith beams forth and deserves our reverent imitation; he keeps his hold upon his God with both hands and cries twice, “My God, my God!” Oh that we could imitate this cleaving to an afflicting God! Nor does the sufferer distrust the power of God to sustain him, for the title used - “El” - signifies strength, and is the name of the Mighty God. He knows the Lord to be the all-sufficient support and succour of his spirit, and therefore appeals to him in the agony of grief, but not in the misery of doubt. He would fain know why he is left, he raises that question and repeats it, but neither the power nor the faithfulness of God does he mistrust. What an enquiry is this before us! “Why hast thou forsaken me?”...A sight of self seen by penitence, and of Jesus on the cross seen by faith will best expound this question. Jesus is forsaken because our sins had separated between us and our God."

Hannah ;)

Saturday, March 27, 2010

Home...

I just got home! While I'm glad to be out of the hospital, I really feel like it was a waste of time, and I feel awful.

Overall, they didn't find anything that could be causing the weird episodes. There are a few theories, but no definitive answers. So I'm supposed to call GI Dr's cell phone any time I get one of them. I don't know how that's supposed to help me feel better, but he said it will make him feel better. ;) It's really frustrating to feel so yucky and they can't figure out why or how to fix it. But at least we know it's nothing life-threatening, which was GI Dr's fear.

On a happy note, the biopsies were totally clean - that means NO inflammation in the upper part of my GI system. This is great news! GI Dr thinks the weight loss/weird issues are due to Dumping Syndrome - basically, my body "dumps" all the food and water out of my system before I can absorb anything. He gave me some tips for slowing things down a little. I've been having some serious issues with Squirt that apparently require surgical intervention, but I don't want to do any surgeries before graduation, so I think I can just live with the discomfort til then.

I'm starting about a million new meds for pouchitis and arthritis and pain and sleep. I feel really emotional and weird today from all these chemicals (I'm now on 14 different meds, not counting ones I can take as needed), so we're tweaking dosages.

I have between 3 days and a week to respond to the new meds for Twitchy. If I respond, I will remain on those meds indefinitely - for as long as they work, possibly forever. If I'm not doing better, we will step up to biologics.

Hopefully all these new meds will be able to keep things under control and keep me more comfortable until after I graduate. Once I do, I'm supposed to meet with Dr. A and GI Dr to decide where we go from here - trying more meds, trying surgery #2 plus more meds, or taking out the J pouch and having a permanent ileostomy.

I am very discouraged right now. I just feel awful, and even in the hospital, they can't make me feel better or understand what's going on in my body. I'm really hurting, and nothing seems to be helping. There seem to be no more good options.

Even though a huge team of doctors can't pinpoint what's wrong, or explain why I'm not getting better, I know that the One who made me does know what's going on, and He's allowing this to happen - it's not outside of His control. Even though I'm honestly very tired of living feeling like this, I know He will keep giving me the strength to face whatever He asks me to handle each day! I'd really appreciate your prayers for peace and calm for my family, and perseverance and trust for me.

Hannah ;)

Friday, March 26, 2010

Chillin' in 456

Back at my home away from home. Looks like I'll be here at least through tomorrow (GI Dr lied! He said just 24 hours! He always lies a little to get me to come in...). But all the staff comes in to say hi, 'cause they all know me, since I'm a "repeat offender" according to my Tech!!

My scopes went well yesterday (I was totally asleep this time, thank goodness) and everything looked good, which is fantastic news. The biopsy results will be in in a few days, so hopefully they look healthy, too. These scopes were to make sure that my stomach and upper small intestine are not inflamed or being attacked by my ADHD immune system. This would be extremely bad news, so please give thanks that everything looked good and pray that the biopsies are unremarkable.

I also met with Urology doc yesterday. He was a cute little old French guy who authored all the textbooks festooning his office shelves. His accent was awesome: "Zeez com-poo-tares are nut wurkinnnnng!" He was very kind, and really encouraged me to stick out the pre-med stuff and go to med school. He told me it's a noble calling, and I should do it. He seemed very genuinely concerned about me and said he'd be praying for me while I'm in the hospital. So sweet. ;) The overall assessment is that I'm still having some bladder issues, but they are quite manageable when I take the meds, and we aren't losing anything by just watching and waiting. I need more testing and possibly eventually a small surgery, but we can wait several months before doing that. He believes (and I couldn't agree more) that this is a pretty low priority right now. Gotta get all this other crazy stuff under control first.

Last night I had one of my little shaky/out of it episodes in the hospital, so the doctor got to see what's going on, which I guess is good, although I felt pretty awful all night as a result. They ran a bunch of tests and ruled out a lot of bad things, but no workable answer yet. My vital signs continue to indicate that I need those IV fluids, so they want to keep me here hooked to my pole (name forthcoming) until they find some answers.

The doctor will be disappointed with one thing: she wanted to do a CT of my head. "Hopefully nothing's there," she said. Unfortunately, I have let her down - my CT revealed my gigantic brain, I'm sure. ;)

Talked for a long time with GI doctor today. The plan for Twitchy is to try an antibiotic cocktail to help with the inflammation, and add another drug for nerve pain to help with the symptoms. If the inflammation and bleeding doesn't stop after 3 days, then I will trade the antibiotics for biologic treatment (similar to Remicade, the treatments I used to do). The hope with the biologic stuff is that it could help systemically with the fevers, "feeling blah," arthritis, etc. in addition to helping Twitchy heal up. GI Dr and Dr. A still really want to try the second surgery, but I don't want to do that until I graduate in early May. Also, they cannot unequivocally state that the inflammation won't spread up my GI system once I'm "reattached," which would be no bueno. So we're hoping that something will work between now and then to get the inflammation down.

So I'm just chillin' in the meantime! Not feeling great, but hanging in there! Studying for the tests I need to make up on Monday. And enjoying the basket of yummy stuff my mommy just brought! I'm actually hungry today, and my orders are to "eat and drink as much as possible," so she brought me candy... yum. Easter candy and chocolate is my FAVORITE. What a great mom. Feel free to call/email/msg/stop in and visit if you want!

I'd really appreciate your continued prayers for me and the family. My GI doctor said today that I'm kind of a mystery. I'm praying that God's peace would radiate from me and be a bright light to my slightly discouraged doctors.

Keep Julia in your prayers as she continues to recover from her surgery! Also Lisa, as she is dealing with some pain still - thankfully, things are going much better for her! And for Steph, who is still in that yucky adjustment period with her J pouch - it takes the body a few months to adapt. In the meantime, she's dealing with some misery.

Hannah ;)

Thursday, March 25, 2010

Bummer.

So... I'm getting admitted to the hospital today.

Hopefully just for today and tomorrow.

I started having my weird little shaky/tired/heart racing/really out of it episodes again on Sunday night. Tuesday night, I kinda was not very responsive, so my roomies called my patents, who called GI doctor, who suggested hospital. Thankfully, I started feeling better shortly thereafter, so the hospital was avoided that night.

GI doctor called me yesterday morning to make sure I was okay, and decided to admit me today - I'm going to be at the hospital anyways for my scopes, so after that, I will just stay while they run more tests and stuff and monitor me.

Please pray that the scopes and tests will lead to some answers about these weird episodes, as well as provide some ideas about treating my pouchitis, fevers, and joint pain. To be honest, things are not looking good at all in the pouchitis department. So some big decisions are going to be made pretty soon, all with some pretty serious life-long implications. So I'd also appreciate prayers for wisdom for the docs and for me and my parents as we consider what to do next.

It's really comforting to know that none of this is a surprise to God. I know that He is in control of this situation! Of course I am not a fan of being in the hospital, but I know that God will use this to His glory.

In good news, Julia came through surgery well! Praise God! Please continue to pray for a smooth, pain-free recovery! Also for her stomach to "wake up" quickly and for her body to adjust to using the J pouch.

Hannah ;)

Tuesday, March 23, 2010

Prayer Requests

Two prayer requests for my colonless buddies:
  • Julia (11 years old) is having surgery #2 tomorrow! Bye bye stoma!! Please pray for the surgeon to do a great job and for a quick, pain free recovery!
  • Lisa is back in the hospital again - they think she had a cyst rupture. She is going through a lot (and not just physically), so please remember her in your prayers!
Thanks!

Hannah ;)

Monday, March 22, 2010

Just a Vapor...

Okay, well, here's the depressing health update...

I saw the Endo NP last week... once again, she kinda took a history, said, "Huh, I dunno. Lemme ask the doctor," then came back and told me what he said. I talked to her about NOT coming in every week to repeat this routine. I'd prefer not to drive an hour and a half to play "relay the message to the doctor," so she agreed that I can just check in over the phone once a week. So now I don't have to come back for a month. ;) The plan is to cut back a little on the steroids in another week.

The scopes and biopsies I have this week will present some interesting challenges. I will need extra IV steroids that day so my body doesn't go into shock from the trauma, so we're working out the details and logistics of how that should play out.

She also wants me to get a bone density scan, since I am at high risk for osteoporosis for about 17 reasons: family history, being a thin, white female, I've had stress fractures, poor nutrition, prolonged steroid use, Vitamin D deficiency, etc. So even if it's okay now, it will be good to have a baseline, because odds are, with all my risk factors, if I don't already have it now, I'll develop osteoporosis sooner or later.

My GI Dr's PA touched base last week with no new ideas. Giving me more narcotics to deal with the symptoms.

The lack of new ideas for treating my GI and joint issues was kinda disconcerting. I felt like the doctors moved from treating the source (since those treatments are not working) to just trying to make me functional and comfortable. Like a hospice patient. I have to admit that I am feeling and functioning much better now that I'm a). sleeping, b). eating, c). in less pain.

Twitchy is doing really poorly, and I'm having some other concerning GI issues. The GI doctor emailed today to ask me to consider going back on Remicade and another med. Not sure what I think about that.

It's a blessing to know, in this time of uncertainty, that I am just a vapor that appears for a little while, then vanishes away. I am so thankful to be able to rest in knowing that God is in control of all this. Today, I only need to face today. I don't need to think about or worry about what will happen five years from now or two weeks from now or tomorrow. I just have no clue what will happen between now and then! I could be all better! I could be dead! Who knows? And really, it doesn't matter. What matters is living to honor God today, right now, this moment. I'm commanded to fix my eyes on Jesus, the author and perfecter of my faith, who, for the joy set before Him, endured the cross, despising the shame, and has sat down at the right hand of God. And so that's what I'm trying to do, every day. ;)

Hannah ;)

Tuesday, March 16, 2010

Happy

So... this week has been really good so far.

Saturday, Squirt and I went swimming for the first time! Everything went well... it was fun. And being in the water helped my joints some, too. I had a good day, health-wise, except for getting sick that night. Still not sure why that keeps happening. That made my poor little arthritic chest very, very sore on Sunday and left me wishing I didn't have to breathe.

This week, I'm off school (yay!), but doing a lot of interning stuff. I get to hang out at an MS clinic this week, which has been wonderful so far. It's making me remember why I want to be a doctor. I love the patient interaction and the thought process and the blend of science and people (and the fact that it's NOT in a hospital. We all know how I feel about hospitals). I'm totally comfortable and my mind works that way and I feel like I'm doing what I'm supposed to be doing. God knew I needed a "Oh, yeah, THIS is what I'm pursuing!" moment or two... I truly believe (at least today - I know He can and probably will change my direction!) this is the path He has for me - it just fits so perfectly with how He's "wired" me. I'm excited to see if He continues to lead me in this direction!

Health-wise... things are okay, some better, some worse. My joints are working much, much better, which is wonderful! Unfortunately, they are still really hurting. My stomach has been doing better, so I've been eating better, and my energy is a little better, which is great! My heart is still going crazy, and Twitchy has been getting much worse and worse. I have some doctor update stuff, but it's not exactly uplifting or helpful, so I don't feel like posting about it right now! Just want to stay happy! ;) Although I'm still dealing with several issues, this week, I'm functioning better because I'm implementing my doctors' new strategies for "Improving Hannah's Quality of Life:" meds to help me sleep and decrease my nausea and pain.

Please keep my friend Lisa in your prayers... her ostomy is being very difficult to manage since the second surgery, which is incredibly frustrating. She is just kind of physically and emotionally drained right now from all she's been through. Praying that she will be encouraged!

Hannah ;)

Friday, March 12, 2010

Drug Seeking Behavior

So... today was the shadiest thing ever...

Went to the doctor to get pain meds. He asked how I'm feeling. He wasn't impressed with my walking. I told him that it hurts to breathe, and I'm not eating because my stomach hurts.

"So you want to be able to breathe, eat, and move? Gosh, you're so demanding."

He wrote me a script with two refills and we made a bunch of jokes about how I'm a druggie and I was gonna go make copies of the prescription and sell them on the street and crush up and snort the pills...

I walked across the street to the pharmacy, reached in my bag and... no prescription. I couldn't find it anywhere. I retraced my steps... nothing.

So... I went back to the doctor.

"Um... I can't find my prescription..."

"Oh, that's fine, it's just vicodin!" (sarcasm). "How did you lose it?!?"

This is so sketchy... he just wrote me another prescription, but told me if I called him and said I accidentally dropped the pills in the toilet, I was out of luck. ;)

Hannah ;)

Thursday, March 11, 2010

Chance of Showers

Yesterday I woke up and literally couldn't get out of bed for about half an hour... I told my roomies it was going to rain. They didn't believe me. Then it started raining. All of a sudden, my phone lit up with texts - "You were right!" I should be a meteorologist!! ;) I was in SO much pain it was unreal. I went to TCU Dr., who gave me some anti-inflammatory cream to put on my joints. He asked me where I wanted to put it. Um, everywhere I have joints? Haha! It still really hurts to breathe, too. We are working on trying to figure out a plan so I can be functional. Yesterday I was so tired and hurting so much and my heart was going so crazy by the time I got to class that I couldn't focus or take notes. That's no good. It's just frustrating since I can't take any anti-inflammatory medicines because they will make my pouchitis worse.

Twitchy is still getting worse. I called GI Dr. yesterday, but I haven't heard anything definitive back. The labs to see what's going on with my upper GI stuff - nausea, cramps, no appetite, etc - came back negative for inflammation there, which is simply fantastic news! Means nothing really bad is going on. I wonder if the antibiotics I'm on for Twitchy are messing up my tummy, although they are supposed to not be absorbed systemically.

I did end up having a better evening. My friend and I went to Sonic and the Botanic Gardens and soaked up some rays. I just freaked her out because I literally started crying in the car because I was hurting so much. By evening, after a few rounds of meds, things were more manageable, but I was kinda emotionally frazzled and freaking out about being so busy and sick and behind in school.

God is good and faithful, and today was better. I made up a test I missed in all this IV fluids every other day nonsense. I talked to one of my professors about what's going on with me, health-wise, and he was extremely encouraging and understanding and helpful. He told me I inspired him. Okay... that's weird, coming from a professor I slightly idolize!

I cancelled tomorrow's appointment with Endo NP (well, really postponed it). The doctor told me last week what I'm supposed to do with the steroids, so I see no reason to subject myself to her on my only morning off! ;) Canceling that appointment improved my day by about 200%.

My boss was asking me about the weather... I told her I thought it was going to rain around 6 pm. She looked at me kinda funny. But guess what? Just before 6, it started raining. I really should go pro! ;)

Hannah ;)

Tuesday, March 9, 2010

Sunshine

Wow, what a beautiful day!! Just perfect!

Since Friday, I'd been really hurting, but I'm finally starting to feel better!! As the day went on, my joints hurt less and less and I got stronger and stronger! Don't know if it's a combo of the weather drying out, the steroid taper thing wearing off, Vitamin D kicking in, or what, but I'm very thankful to not be in as much pain! It still hurts to breathe (TCU Dr thinks I have arthritis in the cartilage where the ribs join my sternum - called costochondritis) and my stomach is still "off," but I have not been at all shaky today!! Praise God! Twitchy is bothering me, but I don't think he's getting worse, which is good.

Lisa is still in the hospital. She's in good spirits - keep praying for her recovery! Hopefully she'll get to go home soon, but of course she doesn't want to be home til her body's ready!

Julia got some tests done yesterday - and they show that she is all ready to go for surgery #2! Keep praying for all the work God is doing in Julia and her family!

My roomie had a good doctor's appointment, with some good new ideas to help her. But of course, they can't "fix" her, and she's still in a lot of pain, so the reality can be frustrating. Keep praying that God will bring her close to Him through these trials.

Thank you so much for all your continued prayers and encouragement. While it makes me sad that I'm sick and they aren't sure why or how to fix me, I can see so very clearly how God is using this in my life to completely fix my eyes on Him all the time. To cling to Him. To be thankful and content. My prayer is that He is using this somehow to bring others closer to Him as well. I know that He is doing this so His glory will shine through, and I pray that He's using me as a "telescope" for Him - bringing God, who's so big and great, into focus in a little tiny way so people can see Him.

Hannah ;)

Sunday, March 7, 2010

Prayer Requests!

My friend Lisa, who had surgery on Tuesday to create her J pouch, got to go home on Friday... but didn't last too long. :( She got sick after a few hours and is now back inpatient. Sometimes it just takes a while for the stomach to "wake up" after such a big surgery, and hers is still "asleep." So, she just has to wait for it to wake back up. Please pray that her stomach will wake up quickly, and that she won't get discouraged! She is a mover and shaker, so hanging out in the hospital is not really her thing. She would (of course) much rather be at home! Pray for strength and patience to get through this time! Wish I could be there, Lisa!

My roomie is going to see her new doctor tomorrow. Please pray that the doctor will have some good new ideas to help Devon!

This weekend has been pretty tough. I am so tired that I literally could not get up for most of yesterday and today! Last night, my friend had to help me to the bathroom to brush my teeth - he held me up, because my joints are so weak I kept falling! Haha! I did feel rather vindicated when I heard the rain last night - the changing weather definitely makes my joints worse. Today I "streamed" the church service and then slept on and off most of the day - I am so so tired, and I welcome any time I can get to sleep! It felt great. I'm reviving tonight, which is good! I'm hoping that the weakness and tiredness is from cutting back so much on steroids, in which case I should feel a lot stronger tomorrow or Tuesday. Hopefully most of the joint stuff is from the weather and will also improve tomorrow. I'm still struggling off and on with blockages, which hurt, but they've been resolving after a few hours. I figured out that continuing to eat helps them resolve more quickly. Now if only I could figure out what is causing them...

Twitchy is not doing well. With pouchitis, if an antibiotic is going to work, then you are supposed to see improvement within 72 hours. I increased the antibiotics on Wednesday... c'mom, antibiotics, you can do it!! Kill those little germs! The theory is that my screwy immune system is reacting to the presence of normal bacteria by attacking Twitchy and my joints! So if they can wipe out the bacteria that are triggering my hyper-sensitive immune system, hopefully my body will settle down and stop attacking itself. I forgot to mention that the mainstay of pouchitis treatment is these special probiotics called VSL#3 - but they can't be used effectively until I've had surgery #2. That's one of the treatments they want to do, one of the reasons they want me to do the next surgery.

Good night!

Hannah ;)

Friday, March 5, 2010

Chocolate from Mommy + Zofran + Sunshine = A Happy Heart

Today I went to see Endo Dr (I PROMISE, my life doesn't revolve around doctors. Okay, maybe it does. *sigh*). He's cutting my steroids in half this week. Some of the labs are back, and they show that my body has shut down my adrenal glands because of the high doses of steroids I've been on for so long. Hopefully (we're talking months and months here), I'll eventually be able to taper back off of them completely. But it will take a lot of time. He also discovered that I am "profoundly deficient" in Vitamin D. So I'm starting mega-doses of that, plus sunshine!! Guess what the biggest symptoms of Vitamin D deficiency are? Joint and muscle pain! Maybe that is all from the lack of vitamin D! I wish ALL my problems could be cured with vitamins and sunshine! Hopefully this is one answer - and an answer that doesn't require more drugs! Yay!

My mommy came to the appointment with me, and as I left, she called me - she had chocolate for me in her car! I was already at the light, so she pulled up beside me, we both rolled down our windows, and she threw it into my lap! Any day chocolate from your mommy falls into your lap is a good day in my book! ;)

Twitchy is just awful. He really hurts and is very unhappy. (TMI WARNING): I spent most of my 12:00 class pooping blood and dry heaving while watching the bathroom spin before my eyes. Yum. My body is just killing me - I truly feel like I got beat up and it's hard to walk. And now my chest and throat are sore, too, from being so sick. Thankfully, I had a dissolvable Zofran (I should do commercials for that anti-nausea drug... it's worth its weight in gold. Well, it probably more than that - it's $10/pill! But today, it was worth it. And actually, TCU athletics paid for it... thank you, TCU Dr), which made me feel so much better. I just had that one class, then work til 4 - so I'm DONE now. Yay. I came home, talked to Miss Marcia on the phone outside while getting my dose of Vitamin D (sunshine). Doctor's orders! ;) So things are looking up.

Please continue to keep my friend Lisa in your prayers as she recovers from surgery! Pray that God will keep her encouraged and at peace. And for a speedy, pain-free recovery! Also pray for Steph, who just completed the surgery process and is adjusting to the J pouch. It's not an easy adjustment, so pray that she won't get frustrated, since I hear it can feel like a step backwards for the first few months.

Thank you all so very, very much for your encouragement and support of me and my family. Each prayer or card or message or call or anything means so very much to all of us. We are so blessed to be surrounded by the body of Christ.

Hannah ;)

Thursday, March 4, 2010

LONG Post

Yesterday was my GI appointment. It was LOOOONG, therefore, so is this post. Sorry. ;) We were there for two and a half hours - most of it with my doctor!

GI Dr. believes I have a couple choices, based on the fact that my biopsies are definitely pouchitis, NOT Crohn's or "backwash ileitis" or "IPS:"
1. Continue the antibiotics and/or try Remicade again for the pouch/joints - problem is, this isn't keeping stuff under good control right now, and I "failed" Remicade, so that's not a good option.
2. Try surgery #2 so we can treat Twitchy with some oral steroid type drugs - problem is, I will most likely get much sicker if they reattach the sick J pouch to the rest of my digestive system. Also, they REALLY don't want to do surgery on me until I can get off steroids. Your body cannot heal well while you're on steroids, in addition to their immune-suppressive effects.
3. Take out the J pouch entirely - he is unwilling to consider this until we've exhausted options 1 and 2, as it's considered a disfiguring surgery because it would leave me with a permanent ileostomy.

I am not super thrilled with any of these choices. I feel like the antibiotics aren't working great. Remicade isn't a good option for a bunch of reasons. I really don't want to have a surgery that will probably cause my health to deteriorate even more, just so we can TRY some drugs that may or may not work (since Twitchy is not attached to the rest of my digestive system, meds I take by mouth have a very limited effect on him. The theory is that if I were "reattached," perhaps the drugs would work better). Finally, I would prefer to not have a permanent ileostomy.

BUT - I would much rather have a permanent ileostomy than be this sick! And I really don't want to keep trying meds until I'm in an emergency situation for surgery #2, do surgery #2, get sicker, try more meds, then be in an emergency situation to remove Twitchy and have a permanent ileostomy. I don't want to keep doing this to my body just because my doctor doesn't want to ruin my quality of life by making Squirt and I permanent "life partners."

He doesn't know what's going on with my almost passing out/high heart rate/shakiness stuff. He agrees with Endo Dr. that my adrenal glands should be way more than adequately supported by the high dose 'roids plus daily Florinef. Also kinda at a loss for why my joints are so weak and stiff despite the steroids. They should be feeling fantastic. Alas. Tomorrow I see Endo Dr, so hopefully he will have some ideas.

So the plan: antibiotics every day (instead of every other day), keep up the meds to help with the cramping/persistalsing in Twitchy, labs, biopsies, and tests of upper GI stuff later this month (things are not working quite right - I'm losing weight, nauseated, not hungry, having tummy pain, and alternating between blockages and not absorbing stuff). He apologized, but wants to do more scopes to check this stuff out. I told him that at this point, I'm goin' for the world record! He told me I've had more scopes than most of his fellows have performed. ;) He also apologized for not putting me all the way out during my last scope (I TOLD him I was still awake...) and said that from now on, I will get anesthesia, not just conscious sedation. I think I've been sedated so many times that the medicines no longer really work on me! Haha!

I was also informed that if I get dizzy again, I'm supposed to call him to be admitted to the hospital.

Last night, I had another blockage, my joints were pretty bad, and I was very shaky. I didn't sleep much. This morning, I was a little shaky and lightheaded, so I called GI. My labs from yesterday (such quick turnaround!) are ALL normal! That's good, but very confusing. So he wanted me to come in and decide if I should be admitted or not. I didn't feel like driving, so my dad was gonna come get me. However, after about 45 minutes, I started feeling less shaky and more conscious, so GI Dr. and I decided to hold off. I drank a bunch of gatorade and was able to pull it together for work. ;) I think that the Florinef (med to help me absorb water and salts) is kicking in - I can tell that I'm actually absorbing what I'm drinking, which makes a huge difference in my ability to bounce back from these weird episodes. So praise God for that! Both yesterday and today, I've been shaky and dizzy, but my body has been able to use what I drink (which was NOT happening for the past few weeks), and I've avoided getting an IV!!

GI Dr. told me today that he is going to present my case and my biopsies to several surgeons and doctors next Thursday. So he'll let me know if they come up with any new brilliant plans. Hopefully all those great minds can come up with some ideas. Twitchy is getting rather uncomfy again, and the arthritis is (they believe) related to the pouchitis. This is probably the most inflamed my joints have ever been, I think - although I've had greater stiffness before, more joints are involved than usual (ALL of them! Like, did you know you have joints in your feet?), and they are very weak and hurting. Weird. Also, today, my muscles started hurting, too - I feel like someone beat me up. ;( Even on pain meds, I can't sleep well (although I'm sure the steroids also complicate the sleep issues), between Twitchy's antics and my joints.

I know this sounds like a whiny post... I honestly don't mean it to sound like that at all. Right now, I'm very tired and don't feel well. But spiritually, I'm truly doing great. I was a little grouchy after yesterday's appointment, because I never enjoy hearing, "You're real sick, and we have no idea why. If you stay this way, you need to go to the hospital." That conversation, especially when both your parents and your doctor are staring at you, is no fun. It makes me feel like I'm in an intervention or in big trouble and they're discussing my punishment or something. Ick.

But God is constantly reminding me of His faithfulness - over and over each day! I can see so clearly how He's using this to make me trust in Him alone.

"I've dropped anchor in Your promises, and I am holding on,
'Cause You are faithful, You are faithful.
I will proclaim it to the world, I will declare it to my heart,
I'll sing it when the sun is shining, I will scream it in the dark,
You are faithful! You are faithful!
When You give and when You take away,
Even then, still Your name is faithful,
And with everything inside of me,
I am choosing to believe You're faithful!"

Please also continue to remember Devon in your prayers! She is in a lot of pain and feels pretty worn down on a lot of levels. Also Lisa! She's very sore from surgery, much more than after her first surgery, and her hubby has the stomach flu, so he's staying away, so she's bored, hurting and lonely - NOT a fun combo! :( :( Pray for a quick recovery and encouragement! You can do it, Lisa!! ;)

Thanks for all your prayers and support!

Hannah ;)

Tuesday, March 2, 2010

Pray for Lisa!

My colonless buddy Lisa had surgery #2 (she's having the surgeries done in 3 stages, like they considered doing for me) today. Please keep her in your prayers! She did fantastic after surgery #1 - so I'm praying that this recovery will be just as speedy. Pray that her pain would be well-managed and she'd keep plugging along towards recovery.

I went straight from 8 am to 5 pm today! Maybe this is a little pathetic, but in light of the last few weeks, that's a huge accomplishment for me. I'm feeling okay, just head aches and my joints are very weak and stiff. But I was functional today, which was amazing. I can see so clearly how God gives me exactly the right amount of strength for each day. Last week, for instance, I was asked to "work from home" for my internship. God knew that I didn't have the stamina to actually go to work. He's so very faithful.

Tomorrow I visit GI Dr. Please pray that he'd consider all the issues I'm dealing with - I'm kind of frustrated with being passed off to another specialist, then having the specialist point me back to the GI Dr. Obviously, something isn't right, and I need the doctors to work together to get this figured out before I wind up back in the hospital.

If my fluid balance issues don't resolve this week, the doctors want me to get a PICC line (more permanent IV that runs into a large vein by your heart) placed so I can do IV fluids myself, stay more stable, and not miss so much class. My veins are very "tired" from the treatments I used to do and from being poked so much - I've been told I have the veins of a chemo patient (what do you say to that?!? Haha!). I told him that none of the other kids have lines... not cool. I don't think guys really dig chicks with PICCs. ;) Today I'm feeling better - not shaking - even though it's the end of the day, so hopefully the steroids and taking Florinef, the new med, every day instead of 3x/week is working!

Hannah ;)

Monday, March 1, 2010

Oops, I Did It Again, Part II

What a nice weekend with the fam... yay. So relaxing! Did Devon and I both good.

Last night two of my bestest friends got engaged last night... what a great time! ;D Congrats Dan and Claudia!

I kinda had one of my little episodes again last night... so today was same song, fourth verse - spent all day getting IV fluids. I can't keep doing this to my body... we have GOT to figure out what's going on and fix it!

I talked to the Endocrine Dr (the actual doctor, NOT the NP) on the phone, because today I don't really feel much better even after the fluids. He was like, "Hm, sounds like your autoimmune GI stuff is really flaring. I think we're doing all we can from the endocrine perspective." He decided to increase the new med to every day instead of every other day, but said that the 'roids should have made me feel better within a day. He advised me to keep drinking as much as possible and get IV fluids as often as I need them. It's just a little frustrating, since GI Dr thought all this was related to an endocrine problem. I feel like they are kind of tossing me back and forth.

Twitchy is definitely doing a fair bit worse since I stopped one of the meds for him and went to antibiotics every other day. My joints are not doing well, either, and I've been running a fever even when I take Tylenol. Hopefully GI Dr. will let me go back to both meds every day - that was working well for Twitchy.

Please continue to remember my roomie Devon in your prayers.

Hannah ;)