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Wednesday, September 29, 2010

Remember the Scope

The latest chapter in the Mr. Clean Saga is that Dr. A has yet to return my phone call. I'm not exactly holding my breath. ;) I'm in the process of obtaining saline syringes from my GI Dr's office - they have been great and are taking care of me even when it's probably outside their umbrella of responsibility! In the process, however, is the search for an internist who can oversee my care. I'm not excited about gaining another doctor (see here for a glimpse into my last experience with an internist), but I understand that it's necessary for me to have a general doctor.

I had a sort of last-minute scope of my stomach today. My GI Dr wanted me to have the scope ASAP, and his counterpart (who is smart and nice and I really like - he talked me through the Remicade decision when I was inpatient one time) agreed to fit me in today! Wow! This is amazing, as it can literally take months to get in for a scope. I feel like GI Dr. really went above and beyond for me, which I do not take for granted and truly appreciate.

For those of you who are interested, I think this was either scope #15 or 16... I've totally lost count at this point, but suffice to say I've been around the block a time or two with the whole scoping nonsense. You know, the receptionist greets me, first and last name. See, she has a granddaughter named Hannah (who lives in England. She buys gifts for her through eBay and amazon.com and has call her husband every time to help her convert dollars to pounds). Every nurse on the floor said hi, since they all know me.

This was, however, only my second time with a scope down the throat... The other time I had an EGD, it was no biggie and they also scoped in Squirt while I was out. The only hitch this time was that my GI Dr was NOT doing the scope. See, at this point, I'm such a druggie and they've sedated me so many times that I probably need enough drugs to put down a large animal to make me yawn. Since I look so small and innocent, ;) doctors usually have a hard time believing this and tend to think that a tiny amount of sedation will probably knock me out cold. GI Dr forgot to pass this information on to his counterpart. I told Dr. Counterpart that sedation doesn't actually sedate me at all. To his credit, he offered to bring in an anesthesiologist and have them put me totally out, but they were already running way behind, and I didn't want to make my poor mom wait any longer than she was already going to have to wait. Plus, he told me he'd give me a little extra sedation, and the test was only going to last about 5 minutes. So... in what was probably not the best decision of the year, I opted to just go for the sedation.

The test did only last a few minutes, but it was unpleasant and the extra drugs unfortunately did not really phase me, as I was pretty well aware as they shoved a camera down my throat. I coughed and gagged and retched through the whole thing, but the good news is that my tummy looks okay. The bad news is that we therefore have no clear idea as to why I'm so nauseated and stuff. And my throat is really sore now from my body's (unsedated) reflexes fighting the scope. ;)

The plan is to try a special antibiotic for GI infections as well as some antifungal stuff and probiotics. The line of thinking goes something like this: I'm immunocompromised, have been on long-term antibiotics for pouchitis, then had hard-core antibiotics for the infection after surgery. So I may have some bad bacteria/yeast in my GI tract. There are some holes in this theory... they were hoping to see evidence of this infection in the scope, but they did not. Also, the drugs that are the typical mainstay of treatment for this sort of problem are ones that I have been taking consistently since November. So I think they are just treating so they have something to try... but it's worth a shot, I guess. I am nervous because in the past I've had a run-in with the antibiotic they want me to try... and the antibiotic won. So please pray that the rematch will go to Semi Colon. ;)

The other issue is that we are aware that my stomach simply doesn't work properly. I've been told I have gastroparesis... balanced out with dumping syndrome. Basically, my stomach, at times, decides to NOT empty, causing nausea and pain. At other times, it empties way too rapidly, causing a drop in blood sugar, stomach cramps, nausea, and malabsorption. It's apparently unheard of for these conditions to coexist (but since when has that stopped my body?), and the medicines to treat one issue will make the other issue worse, but either issue can cause nausea. Since my body can cycle from not emptying to emptying too rapidly within a few days, I have no idea how we can treat both. But, at some point, the doctors would like to do a test to see how my stomach empties. I'm not really sure how that will be useful... they could do that test every day of the week and come up with that many different answers for how my stomach empties!

Anyways... I think that my GI system is just totally traumatized from all it's been through since I got sick in 2006. All the little nerves are a little bit freaked out. Once they get over their PTSD, hopefully they will get their act together and start working properly. That's my theory, and I'm sticking to it! ;)

Please continue with the Romans 5:1-11 challenge!! Hopefully you are through verse 10 by now... but if not, don't lose heart! If you never actually started, that's okay, too - but why not start now? If you're too intimidated, why not at least read through these verses every day? It will take you less than 5 minutes. God is using these verses to help remind me to keep things in perspective. I was God's enemy! My sin makes me repulsive and offensive to God - there's such a huge contrast there between my sin and His perfection purity and holiness, yet He DIED for me! Wow! How can that not make you feel amazing? What a tremendous blessing that I am totally unworthy of receiving... puts a little thing like being awake for a scope seem pretty insignificant. I think that's what Paul was talking about when he said in Romans 8:18: "For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us."

Hannah ;)

Monday, September 27, 2010

Epic Fail: The Saga of Mr. Clean

~Part I~

The Discovery of the Larger-Than-Softball-Sized Mass

After Hannah spent several days post-operatively literally screaming in pain and complaining that it was difficult to even breathe due to the swelling of her belly, her white count skyrocketed. She felt as though she had a UTI, but tests were negative. A CT was finally done, revealing a huge fluid collection or abscess or something in her abdomen, indicating that perhaps the doctors should have listened a bit sooner when she said it hurt.

Subsequently, a drain (Mr. Clean) was placed. You can read about it here; it was an interesting experience Hannah hopes to not have to repeat. It was just super weird. After a very painful first night, things seemed to be on the right track.

~Part II~

Hannah is Sent Home

On the day of discharge, it becomes clear that Mr. Clean is going home with Hannah. As there is some care involved with the drain (flushing the tube out with a saline syringe twice a day), Hannah asks the six surgical residents if she needs to continue this care at home. She is assured by six surgical residents that, no, she does not need to do anything at all with the drain. Hannah questions this. She is condescendingly reassured that, no, nothing needs to be done. Hannah asks a third time, not to be rude, but to be certain. She receives the same answer, and is instructed to make a follow up appointment with Dr. A for Tuesday (three days following discharge), at which point he answer any further questions she has about the drain.

~Part III~

Hannah is at Home

Hannah spends all day Monday trying to make the Tuesday appointment with Dr. A. Finally, around 4 pm, the appointment for the following day is confirmed. At 6 pm, Hannah receives a call letting her know that Dr. A has cancelled her appointment; after all, she just got out of the hospital three days ago. Okay... Hannah receives a call from Interventional Radiology, the people who placed the drain, wanting to see how she's faring at home. Hannah says she's fine. IR asks if she's having any trouble flushing the drain. Hannah remarks that she was told not to flush it. IR seems a little uncertain about the wisdom of this. At this point, so does Hannah, so she calls Dr. A's office. Dr. A's office seems aghast that she is not flushing the drain. Hannah also mentions that she was told by the same people to make the Tuesday appointment, and she doesn't want to come in if it's not necessary, but she would like to know what the plan is with the drain. A staff member calls back, confirms that she should flush the drain twice a day and she will give supplies to the GI Dr's nurse, who Hannah will see on Wednesday. Dr. A would like the drain removed next Tuesday, and then for Hannah to see him 2 weeks following.

~Part IV~

Hannah Attempts to Procure Supplies for Mr. Clean

Hannah attends GI Clinic and asks GI Dr's nurse for the supplies to flush Mr. Clean. This turns into a huge fiasco, as no one anywhere has documented what needs to be done with Mr. Clean, and Dr. A's office did not, in fact, contact her to let her know that Hannah needed supplies. Poor GI Dr's nurse has to run around and get approval from someone, as no one knows what Hannah is supposed to be doing with Mr. Clean, as it is not documented anywhere. Hannah gets supplies, after a long period of waiting and much hair-pulling by GI Dr's nurse.

~Part V~

Hannah Has Difficulties

So... as you may recall, Hannah's rear end has been permanently sewn shut. In theory. On Thursday, Hannah begins to experience pressure in her abdomen and goes to the bathroom... blood comes out the theoretically sewn shut backside. As Hannah flushes the drain, she experiences the same pressure and the same issue. Monday (today), Hannah calls Dr. A's office. She politely inquires if this is normal. She encounters a nurse who not only does not speak fluent English, but is totally unfamiliar with the surgery Hannah had and Hannah's anatomy and Mr. Clean. The nurse encourages Hannah to go to the ER because of the bleeding she is experiencing. Hannah says, "No, the ER doctor will not know what to do. I need to talk to Dr. A." The nurse says she will relay the message to Dr. A and call back.

~Part VI~

Hannah Bangs Her Head Against a Wall (Figuratively)

The nurse calls back a few hours later with questions about the drain. She spoke to Dr. A and neglected, it seems, to ask him about the whole bleeding from the theoretically closed backside issue. This causes Hannah to wonder what the nurse did talk to Dr. A about. Hannah answers the questions about the drain. It seems that Dr. A wants her to cancel the appointment with IR. Dr. A now revealed to the nurse that he doesn't want the drain out until it is draining less than 20 cc a day. Hannah is not sure how this is ever going to happen, since she flushes Mr. Clean with 20 cc a day... so the output is always going to be at least 20 cc. And if that is the case, Hannah also wonders why Dr. cancelled her appointment with him and instructed her to have the drain out this week. Is it bad if her drain is still draining more than 20 cc almost a month after it was placed? The nurse has no answers, but clearly does not have an understanding of what they did to Hannah during surgery. So Hannah tries unsuccessfully to explain. After being asked to loudly repeat three times the embarrassing phrase, "THEY REMOVED MY ANUS" without the nurse comprehending, Hannah requests to speak directly with Dr. A, as this telephone game was clearly not working. The problem remains that Hannah is bleeding out of an orifice she no longer has and she needs to know if this is normal or if it's a problem. The nurse tells her to just watch it and she's sure it's fine. Hannah requests again to speak directly with Dr. A. The nurse finally admits, "I not know the surgery you have. I not know what is the drain you have. I leave message for Ducktah A call you tomorrow."

~Part VII~

IR Saves the Day

There is a sort of happy "ending" to this story... Hannah calls IR to cancel her appointment and tells them she has several questions. They immediately have a PA on the line who is equally concerned about the backside issues, but took the time to answer all her questions concerning the drain and was extremely knowledgeable and helpful. She made a plan for the drain (flush with less saline, she will call in a week, Hannah can call at any time with additional questions, whenever the drain output minus whatever is being flushed in equals 20 cc, Mr. Clean can come out). Why can't SHE be Hannah's doctor? Anyways, IR is the hero of the day. But Hannah would STILL like answers about the bleeding thing... She is pretty sure the blood is from the fluid collection/abscess that Mr. Clean is supposed to be draining. But really pretty sure that this should NOT be happening...

~To Be Continued...~

I'm confident that there will be a Part VIII and probably more, as I realized that I do not have enough supplies to keep flushing Mr. Clean indefinitely. So I'll have to acquire more supplies, somehow... I am extremely disappointed with the way communication concerning this surgery and Mr. Clean's care have been handled. No one seems to know what's going on, everyone has a different story, and Dr. A is not doing so hot on communicating with me, but will cancel appointments I have! As a Christian, I want to be gracious and kind and understanding... but at what point do I put my foot down and say, "This is NOT OKAY!" At what point does this miscommunication and phone tag rigmarole become dangerous to me?

Sorry you had to read this whole epic adventure... congratulations to making it to the bottom!

Hannah ;)

Sunday, September 26, 2010

NO Hospital ;)

Thanks for all your prayers! Thankfully, thus far I've avoided the hospital and I've been able to eat and drink some!

Friday was more of the same - very nauseated, very exhausted. I talked with Endocrine Dr on the phone to make sure we weren't missing some kind of steroid problem or something. Before she called me back, she read my chart and all my recent labs and knew what was going on with me. That is very unusual and I like it! Unfortunately, she didn't have any other ideas for what's going on, but was fairly sure that I'd end up back in the hospital over the weekend. Thanks for your vote of confidence, Endo Doc. My body just doesn't have any reserves, especially fluid-wise, so I get really dehydrated and sick really fast. So unless I started eating or drinking again, I was supposed to go to the hospital.

Happily, I was able to eat on Friday night! And on Saturday night! ;) I've eaten some today, too, but it seems like a no-win situation: either I'm so nauseated I can't eat, or when I do eat or drink, my stomach hurts more. Of course, life and no hospital wins out every time over starving to death and emergency room visits, so if I can eat, I will. ;) But it's not so fun when you are forcing yourself to eat and you know it's going to hurt later!

This week, I decided to go off my sleepy medicine and then my pain patch. I know, fantastic timing, Hannah, right? I figure with the nausea, the fewer meds I'm on, the better. I had this suspicion that the patch was making my nausea worse. Now that I'm off of it, I don't know that it was actually making the nausea worse, but it sure was helping with the pain, haha!

Anyways, we can definitely feel your prayers, as it seemed a hospital admission would be unavoidable, but I've perked up a little bit. If this nausea continues, though, it's still definitely a strong possibility. I continue to hope that this is all just a bump in the road to recovery and that I will soon be fat from all the food I can eat once again, and will be able to return to working out on my soon to be healthy joints with all the energy I soon hope to have. ;)

Hannah ;)

Thursday, September 23, 2010

Nausea

Sorry for no update in a while! I've been sleeping pretty much all the time, hence, no blogging! I have turned off my phone ringer, too, so if you've called me and I have yet to return your call/text... I'm very sorry. I'm working on it! ;)

Since I've been home, I've been super nauseated. So nauseated that I'm hardly eating or drinking. I've lost 7 pounds since Saturday.

I saw GI Dr on Wednesday, hoping for some answers about the nausea. I was super nauseated like this for most of August before surgery, and was puking every couple days. I've been struggling with nausea to some extent or another since February, but it's been worse since the beginning of August. At first, we thought it was from the antibiotics, so I stopped taking them. Then, we thought it was a stomach bug. But I never really stopped feeling nauseated, and the vomiting kept coming back every few days. Then, I thought it was the pain patch I wear. So I took it off for a few days, but continued to feel sick. Then, we hoped that the inflammation everywhere from the pouchitis was the cause, and that surgery would fix it! I mean, it makes sense to think that if you are cramping and bleeding internally all the time, it might make you feel a little queasy. Alas, I still feel that same nausea now, a month out of surgery. The GI doctor really doesn't know what to think about the fact that I continue to have constant nausea, as well as tummy pain when I eat. We're trying a PPI (basically, an acid reducer) and I'm also taking a couple different anti-nausea meds. Nothing is really helping yet. GI Dr was not impressed with the weight loss thing and with the not eating and drinking thing and asked if I wanted to go back into the hospital. Um, guess what I said? ;)

I am still dealing with joint and muscle pain, too. While I really really wish I didn't hurt so much, I am most thankful that it's been manageable and that I've been able to sleep!

I've had some doctor lack of communication/conflicting information concerning Mr. Clean the drain. Much time has been spent on the phone trying to get all that straightened out and squared away. I THINK I have the correct info and stuff and that we are all on the same page now! The doctors who discharged me gave me wrong directions (I'm a little frustrated because it seemed incorrect to me, so I questioned them several times... and was reassured each time that they were correct). As a result, I now have developed an even stronger distrust for student doctors and their wealth of confidently stated misinformation. ;)

Please pray that the nausea will decrease and that I'll be able to eat and drink! I'd really love to be able to avoid the hospital if at all possible! Please also pray for wisdom and peace and rest for my parents - I think I'm stressing them out again. ;)

Hannah ;)

Sunday, September 19, 2010

HOME!

Well, they pulled the PICC and sent me home! I did Friday night into Saturday without TPN, and since I lived through the night, haha, they decided I was okay to go home. Friday night, I actually ate some Chipotle (just rice and chicken in a bowl, but still, real food!!) and felt semi hungry and it tasted okay! But then I had to take two different kinds of anti nausea stuff to keep it down. But hey, I ate food!

I am home with the lovely drain (which I have, with tongue planted firmly in my cheek, dubbed "Mr. Clean"). The drain bag was literally the size of a loaf of bread... so when they started talking about sending me home with it, I informed my intern that we'd be finding a more... discreet set-up. His reaction was classic doctor: "Oh, yeah, that's something we really don't think of very often. I guess that bag's kind of big and not exactly subtle." Silly doctors. ;) Thankfully, they were able to replace the huge bag with a bulb (similar in size and shape to a hand grenade). I still have over two feet of tubing and it's still pretty obvious, but I can actually put it UNDER my clothes and it's much better than the huge bag full of blood hanging off my leg! No one will even wager a guess on how long or short a time I'll have to keep the drain, so I don't really know. I am not a fan of Mr. Clean, although I clearly understand the necessity of keeping him in. The whole system is under constant suction, which I think is contributing to my stomach pain - a drain sucking on traumatized guts - sounds fun, no?

It took me quite a while to "move out" of my room! EVERYONE was very sad to see me (well, mainly to see my decorations) leave. I really mean everyone: the transport people, dining services people, housekeeping, front desk workers, nurses, security guards, techs - everyone knows my name and my awesomely decked out room and IV chocolate syrup bottle, since I'd been here for so long. I already miss all my amazing, incredible, awesome 3 North nurses... simply can't say enough good things about all of them. But really, it was time to go. ;)

Once they finished all the discharge stuff and I was just chilling in my room, I had a small breakdown. I really don't mean for this to sound whiny, but to be very honest, I am having a bit of a hard time with how I'm feeling physically. This surgery and recovery has been the hardest thing I've ever done... and that's saying something. As long as I was sitting there in the hospital, I sort of had this hope that they would find something wrong that would be a quick fix or that stuff would just get better. Going home feeling like I did before I had surgery saddens me, because this surgery so far has yet to make me feel better. Yes, I am (for the first time since 2006) no longer bleeding internally because we took out the sick-beyond-hope J pouch. That's got to be a good thing! But I'm having the same stomach pain and nausea that I had before surgery. Eating is still a chore. My joints and muscles hurt.

Of course, I hope that I will start feeling better and that my body just needs more time to heal. But I don't know that for sure... anyways, it's all about perspective, and I just need to keep mine on Jesus, not on my circumstances! And really, things could be so much worse... I realize how incredibly blessed I am with an amazing family, wonderful friends, people I don't even know who pray for me and follow my story... there are so many people out there going through much harder things with much less support and love. Quite honestly, I am spoiled! I can't even express my thanks to all of you who encourage my family and me along the way...

The first day home has been okay! I was pretty concerned about being able to stay on top of pain at home, but it's been okay-ish. More of a problem is the nausea. I'm really nauseated almost all the time, despite taking anti-nausea stuff. Sleeping makes it feel better and my pain is okay enough that I'm sleeping fine, which is FANTASTIC. Plus, at home, no one wakes me up to check my blood sugar or take my vitals or poke on my belly. ;) So I slept pretty much all day. Then felt renewed and partied all evening, haha. ;)

Hannah ;)

Saturday, September 18, 2010

Woot Woot

I'm home.

More later.

Hannah ;)

Friday, September 17, 2010

Getting Closer...

It appears I may get to go home as soon as tomorrow!! Yay!

I've done well the past two days with TPN running only 12 hours a day instead of 24. The nutrition people say I'm doing okay with eating, so I am allowed to start tapering off TPN! Eating is still a struggle, as I feel nauseated all the time and my stomach hurts, but I'm pushing through it and eating more, although it's not so fun all the time.

My stomach hurt a ton yesterday afternoon and all night, and my joints and muscles were unhappy, too. My heart rate was double what it usually is. I don't know if it's from pain or what, but it was a rather unpleasant evening. I am hoping that the doctors will agree to put me back on the meds I was on at home to manage the joint and muscle pain better. The doctors don't really know what's causing the belly pain. We are hopeful that it's still related to the abscess - that would mean that it will eventually go away!

And about the abscess and drain... yeah. Seems I will get to take the drain home with me. The abscess was huge - like bigger than softball-sized. My body had kind of walled it off, apparently. After two weeks, we've drained out a lot of the fluid, but it still continues to drain blood. The CT on Monday showed that the abscess is much smaller, but a lot of "debris" remains in my abdomen, which I guess is tough to drain out? Anyways, the IR and Surgery people are discussing potential plans. One involves them basically flushing my abdomen with a bunch of saline, then pulling it out in the hopes of removing some of the crud. Sounds fun, right? ;) Honestly, at this point, nothing surprises me anymore! ;) But they all seem to think that I will need to keep the drain in for a few weeks more at least. I am less than thrilled about that (not excited to have another tube hanging off of me and another bag to cover up), but of course I understand the necessity of having it in! And I'd rather go home with the drain than stay in the hospital just because I have a drain in.

This afternoon, I got unhooked from my IV pole!!! FREEDOM! I'm ashamed to admit this, but it's funny, so here goes: I went to walk Marcia out of my room, so I stood up, unplugged my IV pole, arranged the wires, and wheeled it all the way out into the hall before I remembered that I wasn't actually attached to the pole... haha!! After four weeks, it feels so weird to walk without my trusty pole (who is named "The Weeping Willow") to lean on! Don't worry, I adjusted after about three steps. ;) I still have to get hooked up to it at night for TPN, but I'm enjoying my freedom now! One step closer to release.

Hannah ;)

Wednesday, September 15, 2010

The H-Word

Today marked a major milestone in hospital stay-dom...

The doctor used the word "home."

Doctors start planning discharge days in advance, and tell you what needs to happen and what you need to do to get there. I was getting a bit alarmed, because the h-word hadn't even come up once so far this hospital stay. But today, it did. Yay!!

Basically, the plan is to run the TPN (IV nutrition - it stands for Total Parenteral Nutrition) at night only instead of 24 hours a day. Hopefully, the lack of nutrition during the day will stimulate my appetite, and I'll be able to start eating more. They won't take me off the TPN yet. I'm still not able to eat enough by mouth, and they don't want to compromise my healing or increase my already high risk of infection by not having enough nutrition.

Unfortunately, I've been having a lot more pain in my stomach the past few days. They really have no idea why. I am hopeful this is just temporary... hopefully my stomach is just still trying to settle down after surgery. I did a little better today with eating, so that's good. I'm trying so hard!

My joints and muscles have been bothering me more. Last night I had one of my weird episodes where I get all shaky and my heart races and everything hurts a ton. It was kind of scary and took a while to go away and no one understands what's going on when I have these episodes. But thankfully, today was better.

I can't believe how long I've been here in the hospital! All I can say is that God is giving me a contentment beyond what Hannah humanly has!! Also, I must admit it's pretty hard to be down when God is so clearly good and so many people are supporting and encouraging me! ;) So thanks!

Hannah ;)

Monday, September 13, 2010

Three Weeks

Sorry for no update yesterday. I did not have a good day yesterday - felt really tired and yucky and my stomach was very unhappy. I've been doing better today, though, and tonight I was able to eat a bit more, yay!

I still haven't been able to eat enough to be able to cut back on the TPN. Since it seems as though I've been going downhill a bit since Thursday, they ran a lot of labs and ran another CT scan this morning. My CT scan appears improved - no huge abscesses or fluid collections, which is good! Some of my labs are a little screwy from the TPN - they think I may have a touch of pancreatitis, which would explain my abdominal pain. But, I've had pancreatitis, and I'm pretty darn sure this ain't it. I was WAY sick then, and I'm not that sick now.

It's been three weeks since surgery - we're three weeks into the Romans 5:1-11 challenge. Keep up the memorizing! If you've fallen behind, no worries - I'm behind in my recovery, so you have plenty of time to catch up or keep going at your own pace! The important thing is to let the verses fill your mind, heart and soul! This week, I've been encouraged by the hope I have that does NOT disappoint. God poured out His love on us and died for us to give us peace with Him. And that's a hope that will never fade or disappoint!

Hannah ;)

Saturday, September 11, 2010

Thank You

Dear friends,

Yesterday I opened the most special gift I've ever received: a book of notes from many of you with encouraging words and verses. Thank you so much to everyone who contributed! I'm not really sure who's to blame for my wonderful book... but please know that I am completely overwhelmed and so thankful and I feel so unworthy of all the kind words. I'm not sure why God has blessed me so much with so much support, love, and prayers... but I sure am thankful! I pray that somehow God is using these trials I'm facing to bring all of us closer to Him and more like Him. May He be glorified in all this!

Still nothing really new. Dr. A is back in town, tanned and happy after vacation in Hawaii. Lucky. We are still debating the benefits vs risks of running another scan. The infection stuff is really just staying the same. I'm working on the eating thing... I just really don't have an appetite. I feel sick to my stomach and it hurts when I eat, which is frustrating. I feel like I'm at anorexia recovery camp or something. I have to do calorie counts and they are pushing me to choke down more and drink supplements and choke down more and more. Hopefully we can at least cut back on the amount of TPN in a few days. I ate a fair amount yesterday, but today was not so good. I'm trying, but it's hard. Honestly, though, I haven't been eating very much since... July or something. So I'm just really unused to eating. I am kind of amazed at my body's ability to maintain a fairly normal weight even though I don't eat much! Kind of like how I didn't become anemic despite bleeding internally for so long. I am Superwoman! ;) Just kidding. God has given my body tremendous reserves!

I finally gave up my happy green button of pain medicine today. It was a sad farewell... just kidding. It's one less IV tube to be hooked up to; one step closer to home! So kicking the IV narcotics habit is a step in the right direction! ;) It's gonna storm tonight, though, I can tell... stupid joints are acting up a little more again. They honestly aren't as bad as they were before surgery, which is a good thing.

Hannah ;)

Thursday, September 9, 2010

TPN and Tornadoes

Thank you all for your kind words of encouragement. I'm still discouraged, and physically, not feeling quite as good as yesterday, but spiritually, I am much better. So thanks for all your support - the Lord truly uses it to lift me up and get my eyes where they need to be. This afternoon and evening, I've been feeling like I did right before they found the abscess, which makes me nervous. Running some tests tonight to rule out other possible causes of infection and hopefully see what's going on. We're still discussing changing antibiotics or doing more scans, but these are things we'd truly prefer to NOT do. Please pray that the infection will clear up and that I can continue to progress in an upward direction...

Dr. A's sub came by and we chatted for awhile. He's sorry for all that I've been going through. He said that on the one hand, the way my stomach feels now may be the new reality: I have IBD, and there simply isn't a good understanding of how these diseases work, and the treatments just aren't so great. On the other hand, he told me about a patient who had a very tough time following surgery, like me. Infections and stuff lingered and she felt terrible, despite all the right treatments. Then one day, without changing her treatment or anything, she simply started improving and gradually got better. So that may happen to me. But we are all disappointed with how little things are changing with me and how long everything is taking. I mean, it's very good that I'm not getting dramatically worse, but it's frustrating that I'm not getting much better.

I really need to get off TPN, but first I have to prove that I can get in enough nutrition by mouth - the protein is especially important. The doctors want me to order any kind of food that I want, and the dietitians are visiting me a bunch and bugging me to drink nasty protein supplements. I was able to eat some soup and bread today (the soup had noodles, so that's progress!). I also tried this stuff called ProStat - 15 grams of protein in just a few ounces of goo. It tasted... nasty. I got in a fair amount, but it made my stomach really unhappy. It looks like I'm probably going to have to drink Ensure/Boost for a while to get in the nutrition I need. My stomach just doesn't seem to be ready to handle food. I've lived solely off of nutritional drinks like that before for a few weeks at a time to help recover from bad flare-ups, so I think I could do it again... we'll see... I'm still hoping that maybe all my stomach issues are just from this infection that won't die. Hopefully we can clear the infection, and then my stomach will be healthy and happy and I can eat without pain and get fat. ;)

Yesterday night, the tornado passed pretty close to the hospital! Storm sirens were going off and everything! First, they made us close our blinds (not sure what good that does, though!) and keep our doors open. Then, they called a "Code Black" (bad weather code), and all the patients had to be moved out into the hallways! Fortunately, this only lasted for about half an hour. Nothing like a little excitement to liven up the hospital! ;)

Hannah ;)

Wednesday, September 8, 2010

Discouraged

Unfortunately, I am feeling very discouraged. My joints and muscles are hurting more again. It's raining, so I guess that's to be expected... I just really hoped that this surgery would put the inflammation in remission. My stomach has not been doing very well - it's hurting more again - hurting like it did before I had surgery. The pain we thought was due to obstructions or something is coming back. I am really struggling with disappointment that surgery has not exactly been a miracle fix. The only difference is that I don't have a bleeding J pouch... but I still have stiff, achey joints and muscles, I'm nauseated and my stomach hurts.

I am still stuck on rice cereal and jello - even that is hurting my stomach, so there's been no talk of tapering off TPN just yet. My white count started going back up again last night, and my stomach feels more "sore" and painful in general, so I'm hoping that some of these symptoms are just from the infection being out of control. The doctors are discussing the addition of yet another antibiotic to try to get rid of this infection. The drain continues to drain, which indicates that there is still yucky infection in my abdomen.

Lest I post completely negative stuff, allow me to update that I am way less swollen. I didn't have knees or ankles for the first week and a half out of surgery. The fluid balance there has been improving since I started the TPN and have been more mobile. My stomach is also going down - I felt like I was about 38 weeks pregnant. My stomach was so swollen that my incision was pulling apart and I literally couldn't breathe at times! It has shrunken considerably since the procedure to drain the larger-than-softball-sized abscess - hmm... think that was compressing things a little? I am more mobile each day - I can get in and out of bed and bend and stuff with relative ease. The last thing to come back is the ability to sit! I'm so sore! Today, I sat for about an hour for the first time since surgery. Progress!

I feel so very overwhelmed if I allow myself to think about the future... I just can't imagine feeling this way forever. I hoped so much that this surgery would bring relief. I know it's probably too soon to say one way or the other...I am continually disciplining my mind to refocus. There are only two things I can focus on without becoming anxious: one is right now, on today, on this moment. To not worry about the rest of my life or next week or tomorrow... or even the next hour. To make myself stay in the present - to look for who and what God has for me RIGHT NOW (Matthew 6:34, James 4:13-15). The other thing I can focus on is what will never change - who God is, what He has done for me (see the Psalms. Like all of them). God gives me peace with this super close-up vision and super long-distance vision.

Hannah ;)

Monday, September 6, 2010

Slow and Steady

Not much new to report... the doctors want me to go very slowly with the liquids, so for the next few days, I'm going to continue with a little soup and hot cereal. Not too exciting, but I've had enough excitement for a while, so I'm quite content to take my time! If all is going well, we can start tapering off the TPN in a few days.

My stomach is feeling less sore and I'm getting more and more mobile, which is encouraging! Please pray that my pain in my joints and muscles is just from inactivity and that I'll have less pain overall! I really want to get off the hard-core IV stuff I'm on.

Today I was pretty tired again - I felt like this on Thursday before we discovered the big infection/fluid collection thing. My white count didn't drop much today - it's still pretty high. Hopefully my body just needs a little rest! Please pray that I will rest in God's plan for me right now and patiently wait for my body to heal. I pray that I won't miss what God has for me right now, here in the hospital.

We are two weeks into the Romans 5:1-11 challenge! Hopefully you are through verse 4 by now! Keep up the good work and let me know how God is using these verses in your life. I know I'm continually amazed by the depth of truth in His word. This week, I'm especially encouraged by the hope I have that is outside of this life. The sufferings I experience now serve only to build and grow my hope in Christ.

Hannah ;)

Sunday, September 5, 2010

Full Liquids!!

Today, I began to feel my stomach waking up! Woo hoo! I enjoyed a lovely day with lots of wonderful visitors... and ate some soup, popsicles, and rice cereal! After what, 15 days? Food has never tasted so good! ;) Yay! Hopefully I can get off the TPN (IV nutrition) very soon - it is messing with my blood sugars a lot - making me feel weird when it gets very low, and sometimes getting so high I need insulin. This is all temporary and due to the TPN, so pray that my body is able to handle food well so we can stop the TPN!

My white count is beginning to come down a little bit, which is good! Please pray that this trend will continue! Pray that my body will fight off whatever infection may be present.

I'm starting to have my joint and muscle pain again... this scares me (and hurts a lot). I'm really hoping that this is a fluke and that this surgery will get rid of this pain. I've been laying in weird positions to try and get comfortable, so hopefully this pain will go away!

I continue to be so encouraged by the Romans 5 passage... I rejoice now in my sufferings, with a hope that does not disappoint. My hope isn't in a surgery or a treatment or a doctor... but in the fact that I have peace with God through Jesus Christ... that He has poured out His love on me while I was still His enemy. Whatever happens in this life, I have such great hope in the glory of God. Please pray that I won't be overwhelmed with "what ifs" or with my circumstances and future, but keep my eyes fixed on Christ!

Hannah ;)

Saturday, September 4, 2010

More Adventures of A Semi Colon

Thursday afternoon and evening, I continued to deteriorate. My energy was shot. I had gotten up, showered, gotten back into bad... and was too tired to even change positions until Friday morning! My mom came up and spent the night with me because I was feeling so crummy.

The surgeon (Dr. A went out of town, so one of his cronies is taking care of me in his absence) came back on Thursday evening to talk to me again. The good news is, no UTI! The tests all came back clean, which is a small miracle! Praise God! The bad news is that he was rather concerned about whatever's going on. He started me on some big gun antibiotics and decided to run a CT scan on Friday to check things out.

I felt pretty terrible, but slept like a rock! Woke up feeling much better, got the CT, and thought maybe we were back on the road to health. The team came back after my CT scan and broke the news to me... there was a huge collection of fluid (an abscess) in my abdomen/pelvis area. My white count is continuing to rise. I'm on three immunosuppressant-type medications. These are all bad things on their own, but together, they are even worse. Dr A's sub is quite concerned. He believes that the fluid is infected and is causing my UTI symptoms and pain by pushing on my bladder. The fluid is also affecting my intestines - that's why they can't wake up. So... they need to get rid of it.

This was the not fun part.

They sent me down to IR (Interventional Radiology) for a CT-guided drain placement. Basically, using CT scan to visualize what they are doing, they make a small incision to stick a giant needle/catheter through my um, gluteal muscle all the way into my abdominal cavity where the abscess is, and pull off as much blood as possible. It was possibly one of the most "interesting" procedures I've ever had before. I had to admit that what they were doing was pretty cool, and they were so very kind to keep me informed of exactly what they were doing before they did it, plus they gave me relaxing drugs... but still... it was unpleasant. I quoted Romans 5 over and over again as I went in and out of the CT scan and felt varying degrees of "pressure"as they guided in first a wire, then a needle, then a catheter to withdraw the fluid. The whole ordeal took a little over an hour. This was truly a surreal experience.

They left the catheter in place and it will remain for quite some time - until the abscess is all done draining, infection is gone, and CT shows no more abscess, I guess? Dr A's sub said for up to a month!! I have to wear a bag (Squirt is no longer the only thing with a bag on my body) over the catheter. It's pretty sick. I'm quite sore from the huge needle in my bootie, but felt okay as long as I didn't move. Friday night, though, I stood to brush my teeth and started having terrible, terrible pain all over my stomach and abdomen. After a few rough hours, the doctor upped my meds and soon I started to feel much less pain... which was fantastic...

Please pray that my body can beat this infection quickly! Please pray that we can keep my pain under control and that my stomach will wake up! Please also pray for my attitude - it seems like just as I make progress in one area, a new crisis pops up somewhere else. But I am 100% sure that this is all a part of His plan. James 1:17 says that every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow. God doesn't change or do things arbitrarily, and He knows how to give good gifts to His children (Matthew 7:10-12). He has chosen to entrust me with this trial, and so I can know for sure that it is good (Romans 8:28) and it is where I am supposed to be. And I know the reason for being in these trials. It's so that the proof of my faith may be found to result in praise and glory and honor at the revelation of Jesus Christ (I Peter 1:7). Staying in the "hard place" will just purify my heart and make me more like Jesus. I've also noticed the abandon it gives me to speak so plainly with others about what God is doing in my life. Praise God for that. He is good. And as He's outside of time, He is good outside of any and all circumstances.

Hannah ;)

Thursday, September 2, 2010

Prayer Request

Well, I was having too much fun yesterday to update! I felt the best I've felt since surgery! It was great. Got to visit with some awesome people, walked around quite a bit, and overall felt like myself! We turned down my pain meds some, and I was just fine with that change. The TPN is going well, and giving me energy!

Unfortunately, I woke up this morning feeling very uncomfortable. Nothing I could really put my finger on at first, and I still felt energetic, but by mid-morning, I felt awful. Just very, very exhausted, nauseated, uncomfortable. So I have spent the rest of the day dozing under my wonderful soft blanket (compliments of Melinda Spray!) with my inspiring uplifting playlist going in the background. ;) The doctors came in a little concerned. My white cell count is through the roof. We think I have at least a bad UTI going on. Please pray that we can quickly get rid of this infection! You may recall that I ended up with a kidney infection for over 6 weeks after my first surgery. This is NOT a process I'd like to repeat.

The other concern is just that I have so many possible places infection could be hiding/spreading. My wounds are of concern, as is the PICC line. If infection were to get into this line, which leads straight to my heart, I could go into sepsis, an infection of the blood. This would be baaaad news. So just please pray that we can quickly conquer whatever is going on here! Also continue to pray for my stomach to wake up!

Thanks!

Hannah ;)