Wednesday, August 29, 2012

Squirt v 3.0 & A CT Scan

On Monday, I went to see Dr. Saturday. I've been going to see him every few weeks, but I realize I realize I haven't mentioned much about the main reason for these visits: Squirt v 3.0. Squirt is my ileostomy, and you may recall that Dr. Saturday revised Squirt during my last surgery.

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Long Background Story: Squirt v 2.0 was very low maintenance. I changed my bag only once a week to every 10 days. Sometimes I would wear the same bag for TWO weeks without any skin breakdown or issues! It was great! The problem was that Squirt v 2.0 had decided it would be fun for more of my intestines to see the world... over time, he started protruding out more and more, until he was about three inches long. This was a bit of an issue. I wear a two-piece appliance (one piece, the wafer is like a hole-punch reinforcer-shaped sticker that goes around Squirt to protect my skin from Squirt's output. The other piece is a bag that snaps to the wafer like tupperware, and collects Squirt's output), and so I sort of had to thread Squirt into the bag and make sure I didn't pinch Squirt when I snapped it on! Also, since he protruded so far, I felt like he was harder to conceal under clothes, although I'm probably the only person who noticed.

See the tupperware-type rim on my bag?
Here's a pic of my wafer
Anyways, due to the protrusion, Dr. Saturday revised Squirt during my surgery in May. I guess he didn't quite realize just how far Squirt stuck out and had quite the surprise when they took off my bag in the OR! They had trouble sterilizing my belly for surgery, since Squirt was protruding like a limp tongue. I had asked him to leave the diameter, shape, and location exactly the same, but bring Squirt in so that he protruded only one inch.

I woke up to a bit of a surprise... Dr. Saturday ignored my order, and made Squirt quite a bit smaller in diameter because he "thought I would like it better." Um, really?? Or maybe I actually meant what I said! Since he made it smaller, he had to stitch up the hole on my belly that was left to the side of Squirt. Of course, in typical Hannah fashion... the hole didn't heal. In fact, it became an open wound... all because of Dr. Saturday's decision. It's been a daily lesson in forgiveness as I must painfully burn the wound with chemicals a few times a week.

Squirt v 3.0 has proved to be very high maintenance. I've had my first leaks in almost two years. Since Squirt is now oval-shaped, he is one size up and down, and a different size side to side (there's a good third of an inch difference), which means that wafers no longer fit. This leads to leakage, skin breakdown (digestive juices on raw skin 24/7 = ouch), and added expense and hassle factor of needing to change the bag more often and use other supplies make things work better. Thankfully, I am beginning to see some improvement, and I haven't had a leak for a few weeks.

Unfortunately, the surgical wound has not shown any forward progress since surgery 3.5 months ago. To track the progress (or lack thereof), I have been instructed to photograph the wound! This has led to many a happy hour of contemplating what would happen if someone stole my camera or computer. Ooooh the pictures they would find! The ostomy nurses and Dr. Saturday suggested that I email them the pictures of the wound. They acted like getting stoma wound pictures in their inbox was a ho-hum, everyday experience. Oh, the life of a Colorectal Surgeon!

I had never explained all of this, because even when he's being a challenge, taking care of Squirt is just a normal part of my daily hygiene routine. I doubt you spend much time thinking about your personal care habits, much less writing about them!

ANYWAYS, Dr. Saturday wanted to look at the wound. I *think* it may be showing *some* progress. He seemed rather concerned that some of the pictures look like some weird IBD complication that can happen on your skin, but when I showed him the wound in the office, it looked improved from the recent chemical burn I'd administered. If it reverts to the weird IBD-looking stuff again, I'll have to get a biopsy to investigate what's going on.

I started having sharp pains in my pelvis in the area where I've had abscesses... also been having other symptoms that I had prior to my most recent surgery. Not good. The only way to really tell what's going on is to do a scan... so today, I had to get a CT scan. This is not as simple as it sounds. Since I'm deathly allergic to the IV dye, I have to be pretreated in advance with steroids and benadryl. And last time, I still had a small allergic reaction despite all the pre-meds, and had to get IV benadryl. I have to drink a special contrast (can't do barium: it's so thick that it causes me pain when it has to go through the tiny opening in Squirt). Today, it took 3 tries and 2 nurses to get the IV in. I made a handy list for the radiologist of Organs Hannah Is Missing. I now do this to help them save face - the last two imaging reports I've received noted some organs that are NOT present in my body as "difficult to visualize" (forgivable) or "normal-appearing" (um... probably not so forgivable). Anyways, despite the pre-meds, I still had some tingling and itchiness in my tongue and throat afterwards. I also had a terrible stomach ache and some wicked nausea that's still hanging on several hours later. They made me stay at the CT place for awhile to make sure I wasn't going into a full-blown reaction, and when I didn't, they sent me home. I've been chilling out since then, sleeping off the benadryl and trying to get my tummy back on board.

Hopefully Squirt's wound starts healing up soon. I'd appreciate prayers for that and for the CT results! I should hear back about the CT scan by the end of the week. It's always an exciting adventure with me! As Dr. Saturday said on Monday, "Your body just doesn't do anything the easy way, does it?" Couldn't agree more...


Sunday, August 26, 2012

Impossibly Stuck, Divinely Blessed

The Blame Game
I've continued to feel pretty crummy: completely exhausted, sleeping 15+ hours/day, unable to shower or leave the house most days. My joints and belly are causing pain, and I'm running fevers. The last week or so has been the latest round of visits to all my specialists. I hoped that we could sort out what was going on and help me to get a little more functional! First, I went to the Endo Doc, detailed in the last post. She said, "You look great from an adrenal standpoint. You are on more than enough steroids. You feel bad because your arthritis and POTS are out of control."

Next, I went to the Rheumatologist. JP Dr wanted to add in Cimzia or a different immunosuppressant. Since I are not sure that the arthritis is the cause of the fatigue and malaise, I thought it would be unwise to add another med into the mix at the moment. So, JP Dr said, "Well, it's partly arthritis, but mostly your adrenal insufficiency is out of control. You aren't on enough steroids. And since you're having such bad problems with fatigue, let's temporarily lower your methotrexate levels." This may cause my joints to flare more, but should help with the fatigue IF it's medication side-effect related.   Her assessment of the adrenal stuff was exactly the opposite of what Endo Doc had said... but I went ahead and increased my steroids a bit.

Note: this is NOT a picture of my doctor
Then I went to the neurologist, the POTS doctor, who I am convinced looks like a private investigator or something - he has this deep gaze and subtle smile. ;) He seems a bit out of place testing cranial nerves and charting; it's easier for me to picture him quietly tailing potential criminals. Dr. Spy asked me if I was following the numerous lifestyle modifications he suggested. I am, and I've also come off of a few meds that can worsen POTS... yet my fatigue, salt craving and heart racing issues are even worse. Dr. Spy said, "We can't get your POTS under any better control until you have completed my 3 month intensive workout program (50 minutes/day of cardio). And you are too sick from your POTS and other issues to start the program. So start off with doing some leg lifts in bed and work up to 50 minutes a day on cardio machines." I am not really sure of how one gets from being unable to get out of bed to completing his program... and he didn't seem to have many practical tips on how to accomplish this, either. He didn't even have me schedule a follow-up appointment, I suppose because there's really nothing else he can do.

So basically... I feel stuck in this health situation, and I don't really see a way out. I am very sick, and it seems that no one knows exactly what to make of it or how to help me. I go to my doctor appointments, take my medication, try to follow their recommendations about lifestyle modifications... and yet, I am not "better." Both Endo Doc and Dr. Spy spent the appointment telling me that they cannot really help me, and explaining why it's one of my other specialist's job to manage my diseases better. And JP Dr spent the appointment trying to manage my endocrine and autonomic nervous system meds and labs.

I did increase my steroids, per JP Dr's recommendation, and, for the first time since I came off the prednisone, I feel slightly more awake and "with it."So hopefully that will help me to be able to get up and around a little more. I am still spending more time asleep than awake, and more time in bed than out during the hours that I am awake. And this weekend, I did feel better on the decreased dose of methotrexate - less poison in the body = less nausea/migraine/fatigue/confusion.

It bothers me that there's no comma after "hard"
My day-to-day reality is hard. My illness is not fun. Even my doctors are at a loss to explain what is going on inside my body, or they may be able to explain what's wrong, but can't really "fix" it. It's something I never would have chosen, but God continually uses it to teach me about Himself. He uses it to change my "head knowledge" into "heart knowledge." For example, I know and believe that God saved my soul from death when I put my faith in Him, but through my illness, I watched Him save my body as well. Two years ago, I was hallucinating in terrible pain in the ICU after surgery to remove my J pouch. God brought me through those horrifically rough days, and He showed me a facet of His salvation in a tangible way that I wouldn't have experienced without my illness.

And I've always known that God promises to provide for my needs, and I know that there are many people who care about me and my family. But were it not for my illness, I never would have seen God dramatically provide for my medical bills nor witnessed the incredible outpouring of support from dozens of people (check out the Help4Hannah website if you'd like to see for yourself).

I don't know if I would have learned these lessons so vividly without the difficulties that God has brought into my life. Now when I speak of God's salvation and God's provision, they aren't simply theoretical attributes or far-off promises anymore. I, like doubting Thomas, have gotten to see first-hand that these things are real. Although you certainly DON'T need to experience miracles to believe that God's promises are true, the wonderful things that God has done in my life serve to deepen my faith and trust in Him. My love and thankfulness for Him are also deepened as I experience God's goodness in new ways every day.

So... if the price for seeing God's goodness "up close and personal" is that I have to experience feeling "stuck," facing a challenging day-to-day life here on earth... it's worth it. As Paul puts it in II Corinthians 4:17, "Momentary, light affliction is producing in us a weight of glory far beyond all comparison." I just have to remind myself that I am divinely blessed!

Hannah ;)

Tuesday, August 21, 2012

Multiple Choices

I went to see Endo Doc at the end of last week. She told me that I look great from an adrenal perspective - I'm on a rather high dose of hydrocortisone for a person of my size, but it seems to be working for me, so she's content to leave it as is. She is happy that I was able to switch over from Prednisone to hydrocortisone without having a major emergency. ;) I'm happy about that, too!
It was an "easy" appointment, but sometimes it's frustrating to feel so awful, then be told that you're doing great. I did have a few really good days last week, so I lived it up to the fullest on those days! Since Friday evening, however, I've barely gotten out of bed, and I've been feeling nauseated and having pelvic pain again, which is concerning. Something just isn't quite right.

I talked to the JP NP (Joint Practitioner [Rheumatology] Nurse Practitioner) on the phone today. I asked her one of those tricky multiple choice questions:

Hannah has the following symptoms: fatigue, joint, muscle, and pelvic pain, low-grade fevers, forgetfulness, tremors, heat intolerance, nausea, and joint warmth, stiffness and swelling. Are these symptoms due to:
a. an arthritis flare?
b. a POTS (dysautonomia) flare?
c. an adrenal issue?
d. another abscess?
e. more than one of the above?
JP NP decided that she couldn't answer this question by herself or over the phone, so she gave me a semi-emergency appointment to see the JP Dr tomorrow.
The million dollar question is: How do we determine which issues are causing my symptoms?

I don't know if JP Dr will have an answer for me out of this multiple choice, but hopefully she can narrow things down and point me in the right direction. I know that they really want me to start Cimzia, a biologic treatment, but I am hesitant to start those shots for a number of reasons. And while I believe that an arthritis flare is definitely a big factor in how I'm feeling, I think that there are multiple factors playing a role in how I'm feeling. So I'd hate to start some big-gun arthritis medication, and still feel awful because some other issue is responsible for my symptoms. 

I've been experimenting with a few of my meds, as there are multiple choices for potential culprits in the fatigue issue. So far, I haven't found a pill that's to blame, but I have been able to reduce the dosage and/or taper off some meds, so that's positive. I also am having a very tough time tolerating my weekly immunosuppressant shot. I "shoot up" on Friday nights, and from Saturday night through Sunday evening, I feel like something the dog dragged home. I didn't experience this severe a reaction when I was at a lower dose, and it seems that the "hangover" is more intense each week. The cough syrup trick unfortunately hasn't helped much, if at all, with the side effects. Maybe I should try menudo...

I truly hope that God will allow us to figure out something from our multiple choices, some sort of strategy that will help me to have a more stable and predictable level of health and functionality. Please pray for wisdom for the doctor to know what is causing my symptoms, and what to suggest! And please pray that I will have wisdom and peace as I ponder the multiple choices for treatment options. I tend to get frustrated at my doctors when I don't like the answers or choices they give me. Sometimes, the reality is that, on this side of heaven, there simply may not be really great answers for me. And that's not the doctors' fault. That's the result of living in a sinful, fallen world. Like Paul says in Romans 8:18-25, I may groan along with all of creation as I endure the sufferings of this present life, but the suffering I face here is nothing compared to the inheritance I have in Christ, my sure hope! With perseverance, I am waiting eagerly for my adoption as God's daughter, and for the redemption of my body! So please pray that, regardless of what choices I'm presented with at the doctor, I will choose to have a God-honoring attitude.

I am completely amazed at God's incredible provision and goodness to me! If you haven't already seen it, please check out Help4Hannah, a website set up by my dear friend Dennis!

Hannah ;)

Tuesday, August 14, 2012

Help 4 Hannah!

The past few weeks have been pretty rough. I've run a low-grade fever constantly, and I've been having quite a bit of pain in my joints and muscles. I am very weak and shaky, so I've been spending most of my days in bed. I've been sleeping like a baby - in quantity, not quality, as I'm still so tired. Most nights, I sleep at least 10 or 11 hours, and I also have to get in another 2-4 hours of sleep during the day in the form of naps! While it's frustrating to be so tired all the time, I am thankful. Just a few months ago, I was in so much pain that I was not able to fall asleep or stay asleep, causing me to very nearly lost my grip on reality. So I'd much rather be sleeping too much than not sleeping at all! I've been able to reduce my dosage on the med I take for sleep.

I've been fever-free since Sunday, and my joints are improving. I managed to hold off on taking more steroids, however, and I *hope* that I'm starting to pull out of this flare! I tried the anti-inflammatory meds for about a week, but they started making my stomach really upset, so I quit. I'm hoping that I can stay off the steroids (my face is already starting to deflate, thank goodness - I look slightly less like a chipmunk!) and avoid adding a biologic treatment into the mix.

I also have struggled with my attitude. It can be depressing to be sick in bed. Over the last three weeks, I can count on one hand the number of times I've left the house. I've simply been too exhausted to get dressed most days, much less to drive myself anywhere or do anything. This makes me feel lazy and worthless because I'm not accomplishing anything. ThenI  feel selfish because all I do is lay around. Then I think about how selfish I am, which means I'm thinking more about myself... which is selfish! So it's a vicious cycle! I need to keep repeating to myself: It's not about ME. It's not about me. It's about God, and His glory. Even if I'm not really sure how God is glorified by me sleeping away most of my days and curled up in bed, too tired to even read when I am awake... it's where He has me right now, and I need to have the right attitude and honor Him with my attitude, with the way I treat the people who are serving me, in praying for others...

Thankfully, however, just as I was starting to feel very sad, God provided amazing encouragement in incredible way. He is so wonderful to do provide huge blessings at exactly the right time.

One of these ways is that my friend Dennis created Help 4 Hannah, a website to help with my medical expenses - what a blessing! Feel free to check it out! I have received an overwhelming amount of support and it's been insane to see the generosity and care of so many wonderful people!!!! It is unbelievable! I sit in jaw-dropped amazement at God's provision through this website. Feel free to check it out!

Hannah ;)

Friday, August 3, 2012

. . . And An Olympic Flare

I was so optimistic and excited and hopeful about being off of prednisone!

And then, Sunday afternoon hit.

And since then, I've spent about 12 hours being awake. ;)

I have been sleeping over 16 hours a day most days. I feel like I got hit by a truck! My joints got all stiff and started hurting like nobody's business - the worst pain I've had since coming home from the hospital. And I've been running a constant fever. *sigh*

At first, I thought it was the usual reaction I get when I taper down to a lower level of steroids... but by Wednesday afternoon, I realized that I am flaring. Without the prednisone suppressing my body's inflammation, my body launched another attack against itself. And apparently, I've really upset myself, as the attack feels rather vicious.

Stupid body.

I talked to the JP NP... we discussed my options. She wants me to start Cimzia, a biologic medication.

A huge incentive for having my colon removed was that this "curative" procedure would allow me to get off all my UC medication, including the biologic Remicade treatments, as I would no longer have colitis or arthritis. Unfortunately, less than 4 months after surgery, Dr. A told me that I needed a biologic medication to control my pouchitis - the colitis inflammation coming back in my J pouch. My arthritis returned as well. A few months later, I started injecting myself with Humira, another biologic treatment. As a last resort, Dr. A removed my J pouch, which he strongly hoped (but did not promise) would cure me of my autoimmune ailments. Alas... it did not. So here I am today.

I was not ready to make this sort of decision over the phone. Biologic treatments are not benign, and though they are highly effective for many people, they don't have a great track record with my body. Also, I wouldn't be replacing my methotrexate (immunosuppressant shot) with Cimzia. I'd just be stacking up meds, and right now my goal is to get OFF medication, not add more!

But really, my goal is to get functional again. To get to the point where I can leave the house more than once or twice a week, only to return home so exhausted that I go to bed for the next few days. To be able to walk without limping. To have less pain and stiffness. And if Cimzia could do that, even for a few months, might that not be worth it?

I don't know. In the meantime, JP NP suggested that I go back on steroids for a month or so.... more news I did NOT want to hear. She has no idea how to do steroids for a patient with adrenal insufficiency, so she wanted my Endo Doc to decide how much steroids and for how long. Um, my Endo Doc is great, but she has NO idea how to treat an arthritis flare! I finally nailed down what the JP NP would "normally" do for an arthritis flare, so now I can ask the Endo Doc for guidance on how to manage the steroids. I am still just hoping against hope that the flare will stop without needing steroids.

JP NP did agree to my proposed plan: that before jumping to steroids, I'd do a few days of my prescription-strength NSAIDs (Non-Steroidal Anti-Inflammatory Drug - the class of drugs like ibuprofen and naproxen; drugs that have an anti-inflammatory effect, but are NOT steroids), but she didn't think that would be sufficient to get this flare under control.

Most of the time, God has been really gracious to grant me a pretty good outlook and attitude about living with this illness and everything that goes along with it. Honestly, though, this week has been really hard, and my attitude has not been great all the time. I just want to be "all done" with this trial and wake up and be better... preferably with an intact GI tract and no scars or bags or painful memories. I want to have learned everything that God wants to teach me. I found myself asking Him what exactly He wants me to do so this can stop.

I know all the good things I could list that have come out of my illness, I know all the millions of blessings God has generously granted me through this trial... and I remember those things, and thank God for them!

This week, I've just recognized that although I've gained a lot, I've also suffered very great losses, from my health to my dreams. For as many happy blessings as I've received, I've also gone through many unbelievably hard things. I thank God daily, but I also daily face very real physical and emotional and psychological pain. And I look forward to and long for heaven, but many days here are almost insurmountably difficult. It's hard. It's usually not fun. And it hurts a lot. Some days, it's agonizing.

I'm learning that it's okay to acknowledge all this sometimes. I think of the children of Israel crying out to God in the midst of their bondage to Egypt, and God turning His ear to them. Even Jesus wept in the garden. The Psalmists describe in flowery detail the things they've lost and suffered and gone through. Paul wrote lists of the hardships he'd endured (I do note that he did NOT make this list so he could whine about how bad he'd had it, but the fact that he was able to make that list indicates to me that it was present in his mind at least occasionally). I think the key is to end where Jesus did: If it's possible, let this cup pass from Me, but not My will, but Yours be done.

It's okay, and even good, to cry out to God in the midst of hardship and trial, to tell Him it's hard, and to ask for relief and deliverance, but it's most important to be in submission to the will of the One who did not spare His own Son, but delivered Him up for us all. How will He not also, along with Him graciously give us all things? (Rom 8:32)

Hannah ;)