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Saturday, February 27, 2010

WOW.

I don't even know where to start.

The last few days have been exhausting on every possible level.

First: good news: Steph got out of the hospital on Thursday - I got to see her briefly. She's adjusting well, just real sore from the surgery.

My scope went well, and Twitchy still looks bad, but much, much better than he did at the end of January. GI Dr. was pretty encouraged, and so am I. I should get the biopsy results in the next week or so.

Twitchy got bad again last night - we went to antibiotics every other day and stopped the topical steroids, so I think it's maybe just not enough to keep the bleeding in check. I'm supposed to call GI on Monday anyways, and see him on Wednesday, so I'll see what he has to say about that. But overall, GI Dr thinks that the problems with Twitchy are manageable. While I may require life-long treatments, he thinks it will improve and be very livable, especially after surgery #2. We will have more options for treating the disease once I'm "hooked up." So that was very encouraging. He is hopeful that the joint pain and fevers will improve once the inflammation in Twitchy improves. I sure hope so. I'm very stiff and swollen and sore.

I keep struggling with blockages, so he wants me to be very careful about no raw fruits and veggies or whole grains. He also believes I'm iron deficient (something about my nails looking weird?), so I'm going to look into this really good iron supplement Julia's mom told me about. Hopefully that will help the headaches?

So... that night, (Thursday), one of my roommates got very sick, so I took her to the hospital. She came home by early Friday morning, but she's still just not doing great, so I'd really appreciate prayers for Devon. It's really hard to watch your friend be in so much pain and nothing really helps her. :(

After a four hour nap on Friday morning after getting home from the hospital, I woke up all shaky. Not feeling horrible, but with the weekend coming up, I decided to go get some IV fluids. My vitals were a little screwy again with low BP and high heart rate and my whole body shaking, so it's really good that I went. After they hooked me up to some fluids, I was doing okay, then all of a sudden, I got unresponsive... every nurse in the health center, the pharmacists, TCU Dr, and another doctor were all trying to wake me up and get me to respond... an ambulance was called... it was quite exciting, apparently. I could hear them and stuff, I was just so tired and light headed that I couldn't move at all. I was totally out of it.

They squeezed a bunch of fluids into me and stuff. By the time the paramedics arrived, I was okay. My vitals had improved, just my blood sugar bottomed out. Apparently this is full-blown adrenal crisis. This isn't anything new - it's been happening like once a day since Valentine's Day... I just happened to be at the doctor when it happened this time. Needless to say, everyone was quite concerned. I didn't feel like I needed to go to the hospital, so I had to sign all these AMA (Against Medical Advice) forms that I was refusing care. TCU Dr. was not very happy with me about that, but my vitals were okay, so if I had gone to the hospital, they probably would have just given me another bag of fluids and sent me home, like they did on Sunday. And then sent me a big bill. So they gave me another liter of fluids in the office, and refilled my pain meds (joints are flaring horribly and I keep getting blockages, even though I'm being careful with what I eat). After lectures from about three nurses and both Frank and Angela (my friendly neighborhood TCU pharmacists), I got to go home. Frank gave me a huge hug, and told me to go call my parents. I about melted. He is just the sweetest little man.

TCU Dr. contacted the Endocrine people. They decided to quadruple my steroids. I can't even begin to express my disappointment about this. That's a pretty high dosage of 'roids. I've been on more, but I've started at that dosage when I was flaring up with UC. So it's a LOT of 'roids, and I'm afraid I'll NEVER be able to get off of them. But really, I don't have any other choice. I can't just keep going into shock every day.

TCU Dr. was very concerned about my ability to get through the weekend even with the increased steroids, but I'm doing okay so far - way less shaking and stuff. After he told me the steroid plan, I went home, cried for half an hour (which felt wonderful. I'm just so emotionally and physically exhausted from everything), ate a snack so I could take the 'roids, and called my mommy. She came and took me and Devon home. So we're chillin' with my fam this weekend. It's just what we needed. I'm so, so thankful for my dear family.

Sometimes I get "high" from steroids, and sometimes they make me feel like I got run over by a truck. This time, the truck thing seems to be dominating. After I took them today, I crashed and fell asleep for three hours. But that's probably what I need. I've been having trouble sleeping lately just from pain and stuff, so I guess I need the rest! Also, this much steroids should completely mask the joint inflammation in a few days, which would be WONDERFUL. I'm trying to be positive about this, but it's really hard to be back on an immune-system-compromising dose of steroids again. Especially since I've been trying to get off them since November. So you may not recognize me if you haven't seen me for a while - I'm still losing weight, but my face is gonna puff up hugely from the 'roids! ;) It'll be cute!

I'd really appreciate prayers for Devon, my roomie. She has autoimmune issues, too, and they're flaring up like crazy right now, so she's in a lot of pain. Pray she'd feel God's peace, and be able to get into a specialist who can treat her - her doctor is in another state, so managing her disease over the phone is pretty tricky and not working out great.

Please also pray for wisdom regarding all the issues I have going on. Also for wisdom with school. I've missed several tests - this adrenal stuff is something I cannot push through. I've been thinking a lot of God's faithfulness, and, although this week has been extremely tough, I completely trust that He is faithful and good. ;)

Hannah ;)

Wednesday, February 24, 2010

Oops, I Did It Again

So... yeah. Wound up getting a couple liters of IV fluids again today.

Last night, I started getting all shaky and stuff. Brain got all fuzzy - I couldn't figure out how to take off my shirt. So I just went to bed. This morning, I didn't feel any better, even a couple hours after taking the 'roids and the new med. So my roomie drove me to TCU Dr. He was not impressed with me - shaking in the fetal position - or my vital signs, and strongly suggested I go to the hospital. We reached a compromise - I asked if we could try some fluids first, then if I still was unstable, I'd consider going. So he sent me to the student health center and hooked me up to an IV pole and gave me some anti-nausea and pain meds. After a few hours, things were looking up, except for that headache that won't die and a slight fever (typical for me when I have inflammation in my system - from Twitchy and joints).

He talked to the pharmacist, and apparently the new med will take about two or three days to kick in. Until then, my body will not absorb fluids or salt properly. So I'm supposed to push fluids and salt everything in sight. If I still get dizzy, I'm supposed to come get another IV. But hopefully this will all blow over by Friday! I'm doing okay now; just head hurts a lot and very tired. Biopsies tomorrow - hopefully they will lead to some answers.

Hannah ;)

Tuesday, February 23, 2010

Endo Appt

Had my appointment with Endo NP. She was kinda dumb. It took me like ten minutes to explain my surgery. I explained the procedure and must have said three times that I have an ileostomy. The light finally went on, and she goes, "Oh! I get it. So you're all done with surgery? You're all hooked up internally?" Um, no. I didn't even know what else to say. I just lifted up my shirt and pointed. "Ileostomy!!" ;)

She took my history, and said, "Oh my goodness, for someone so young, you've been through a lot of health problems! Let me go talk to the doctor!" She came back, and told me what he said. He thinks that my body has just stopped making its own steroids. I'm starting a new med. I asked her how it worked and what it did, and she said, "I don't really know, but I think it will help you." Sorry, lady. That's not gonna cut it. I made her look it up. ;) It's a med to help balance out my fluid volume and electrolytes so I won't be blacking out/getting dizzy and shaky. It should allow me to cut back to 10 mg of steroids. Basically the plan is to try the new med + 10 mg steroids for a week, then reevaluate. The goal is to slowly (over months) try to wean back off steroids.

I was sort of disappointed that she wasn't exactly the sharpest scalpel, so to speak. I felt like I had to drag answers out of her. I don't think she really knew what to tell me. I asked her what I should do if I get like I was on Sunday. She suggested I call the office. I asked her what they would tell me, and she said, "Well, it depends on what your symptoms are." As I had just described my symptoms to her, this was not very helpful. So I repeated myself - "If I feel lightheaded, can't see, heart races, body hurts really bad, what will they tell me?" She said, "Well, I guess you should probably just go to the hospital." Like I said, she wasn't very helpful... hopefully the new med will settle things out quickly! I did talk to TCU Dr, who agreed to give me IV fluids in his office if I need them. That way I can avoid the hospital!

Also, I'll be getting scope #10 + biopsies on Thursday. GI Dr usually only does procedures on Fridays, but he agreed to come in on Thursday just for me. ;) See, it pays to be your doctor's favorite! What a nice guy.

I'm still very tired and my joints are really weak and swollen today (probably due to the weather). The splitting headache comes back every afternoon. The good news is: I'm not really shaky today! I got refills on meds and new antibiotics today, so hopefully Twitchy will settle down. Goals for the week: survive, no hospital, work on gaining weight.

Hannah ;)

Monday, February 22, 2010

Prayers for Steph!

Steph came through surgery - everything went great! She called me just a bit ago, and she sounds tired, but good. She's already trying some clear liquids. Her pain isn't being well-managed right now (she didn't get a pain button! So sad!), so pray that her pain will come under control. Also keep praying for a speedy recovery with NO COMPLICATIONS!

I made it through class and a lab today, but I'm skipping night class. I took my hospital papers to Campus Life as an excuse for missing class today, and they told me I look awful. Thaaaaanks. ;) I'm doing okay today, just very tired. Headache has returned, heart rate is still a little wacky, but overall I'm a lot more comfortable and alert than yesterday. Tomorrow I go to see an endocrinologist nurse practitioner. Hopefully that will bring some answers!

I ran out of the special steroids for Twitchy this weekend. I think they were helping more than I thought. Hopefully the pharmacy will get those in tomorrow.

Hannah ;)

Sunday, February 21, 2010

Drug Seeking Mission: Accomplished

Okay, so... today I wound up in the ER. :( But I'm home now!

I took a bunch more steroids today: 17.5 mg of steroids - roomie confronted me that I still wasn't feeling good, and TCU Dr told me to go up if 10 mg wasn't doing it. I needed to take care of myself. So today I took 12.5, then 5 more later, as I was very weak. It didn't kick in, and I literally could not focus my eyes or see or voluntarily move, but was just shaking on my bed and in lots of pain. So... some very dear friends intervened and I wound up at the ER. My wonderful parents stayed the whole time (they are so incredible... I feel so bad when I do this to them). The extra 'roids were starting to kick in a bit by the time I got seen at the hospital, but all in all it was a good choice to go.

Labs were okay, except for WBC being high from steroids and/or inflammation. After some fluids and a couple rounds of morphine, I perked up again and my vitals returned to normal. Aside from still having that pounding headache/hangover feeling, I feel the best I've felt since last Saturday (no shakes!). So they sent me home with some very nice drugs and directions to follow up with an endocrinologist tomorrow or Tuesday - as soon as they can get me in.

Please pray for Steph, who goes in for surgery #2 tomorrow at 7 am! Pray for Dr. A to have skill, and for a speedy recovery with NO complications!

Praise God for my sweet roomies, friends, and family. I would not make it without them. I'm so very blessed in so many ways. Also, praise God for the excellent staff - tech Nathan got my IV in on the FIRST TRY (which is a small miracle), and my nurse, Peter, is pretty much my hero. He was so very knowledgeable (far more than many doctors I've seen) and kind and caring and fantastic.

Time to go enjoy some good drugs. ;) Hopefully they will kill the headache.

Hannah ;)

Friday, February 19, 2010

TGIF

Whew! It's been quite a week!

So... on Wednesday, the day after my appointment, my GI's PA called to let me know that they were calling in a few meds for me, and not the ones we'd talked about the day before: Cipro and Canasa, an anti-inflammatory UC med. Unfortunately, I can't take Canasa because that class of medications gave me pancreatitis, and I've done three rounds of Cipro. She paused and transferred me to GI Dr.

GI Dr pondered, and told me his thoughts:
He is not convinced I have pouchitis. It's very, very rare to get before takedown. He thinks there are three possibilities, all of which have made-up sounding names that make me giggle:
1. I do have pouchitis
2. I have something called "Irritable Pouch Syndrome," so basically my nerves are messed up, causing the pouch to spasm and peristals for no reason. This doesn't explain the bleeding, though.
3. I have something called "Backwash Ileitis" which is ulcerative colitis in the ileum (the end of my small intestine that makes up Twitchy).

Don't you think that those names all sound fake? Who came up with that? Um, excuse me, we need some fancy Latin names over here in the GI Department!

My scope showed a lot of inflammation and bleeding, but no ulcerations. Dr. A didn't take any biopsies when he scoped me (which surprises me, since they've done biopsies the other 9 times I've been scoped). Apparently, without the biopsies, GI Dr. can't differentiate between the three possibilities. So yeah, scope # 10 (eleven if you count the cystoscope) will be taking place in the near future. I was so, so naive when I posted that the good thing about no colon was no more scopes. Oh, how very wrong I was! ;)

In case it is IPS, he prescribed me a med to help with the spasming. Only problem is, it inhibits bladder function. Mine is already really screwy, but we decided that bladder issues are the lesser of two evils at this point. The med isn't really helping a lot, though.

He should be calling in the antibiotic we discussed on Wednesday, too.

The main problem this week has been the dizziness/blacking out thing. I'm really shaky all the time. For about an hour a day, I get really lightheaded and literally can't put a sentence together, I'm so out of it. When the dizziness passes, I get a horrible headache. My back is really hurting and my joints are incredibly stiff and sore. I'm nauseated all the time, have no strength, and my heart is racing. If you Google "adrenal crisis"... I'm in one. I have every single symptom, down to the salt cravings! Kind of crazy! At the advice of TCU Dr (still haven't heard back from Endocrinology), I upped the 'roids to 10 mg yesterday. I've worked SOO hard to get down to where I was... I was at 10 mg around Christmas and I've been slowly coming down since then. So this is very frustrating. And I still feel horrible. My body really hurts a lot (the best way I can describe it is that it feels like I belly flopped from high dive into an ice cold pool - that every-fiber-of-your-being-on-fire feeling), but I'm so nauseated that I don't want to take any meds, and I won't take my really hard core pain meds when I'm lightheaded because I hate how that makes me feel. So the past few days have been extremely rough. If I get dizzy one more time, I'm pretty sure I'm going to the hospital. I'm just very worn down and in a lot of pain, for some reason.

I started an internship last week and a work study this week, in addition to several tests in school. Not really sure how I made it through all this. TCU Dr. was rather disbelieving that I could function, since I'm so shaky and hurting. It's been really hard. I got real dizzy in class yesterday and just put my head on my desk and sat there visibly shaking for the rest of the class... the professor and a friend came up after class and were like, what's wrong with you?? and made me come to his office til I felt okay. I wanted to die. It was sooo embarrassing. :( Then I went to work... somehow I've been pulling that off. ;) I did postpone a test I was supposed to take today. Hopefully the extra steroids will kick in and I'll start feeling more human. Every day as soon as I walk in the door, I pretty much literally collapse into bed and lie there shaking. So hopefully this weekend is a good respite!

Hannah ;)

Wednesday, February 17, 2010

Three White Coats

Interesting day yesterday. Overall, while I don't like the situation, I think my doctors are handling it very, very well.

Dr. A is pretty concerned with a few things:

1. He has never actually seen pouchitis in someone before the second surgery (therefore he's consulting with other specialists, and referring me to my GI, who said, "Tell her she's not supposed to have pouchitis before takedown!" [the second surgery]).
2. I am not responding to the first line treatments for pouchitis - Cipro, other antibiotics, and steroid treatments.
3. I am having systemic symptoms, like joint pain and swelling, fevers and weight loss - indicating that my whole immune system is goin' crazy all over my body.
4. The whole dizzy/almost passing out thing and the steroid tapering problem leads him to believe that my adrenal glands have shut down.

The conclusion was Dr. A, his PA, and my GI Dr all discussing the situation together, which is a very, very good thing. And a very rare thing. Three medical professionals collaborating?? Excellent. The plan is:

1. Continue the localized steroids
2. Start a new, harder-core antibiotic
3. Labs to check on inflammation levels
4. See an endocrinologist to figure out what's going on with the adrenal gland stuff
5. Follow up with GI Dr in two weeks

I should see improvement within 2-3 days of starting the new antibiotic. If it doesn't work... Dr A said, "Well, then we need to pull out the big gun medications." By that, he means immunosuppressants and the next-generation of Remicade type treatments (biologic therapy). Then proceeded to leave the room for five minutes.

I'm sitting there, staring at the white walls, just thinking, "This is exactly what GI Dr warned me about. That he had this gut feeling that we were gonna do this surgery, but I wasn't gonna get better." But! That's something I do not have to face today (and hopefully I'll never have to face), so we're not gonna dwell on that possibility. "Do not worry about tomorrow..." C'mon, little Twitchy! C'mon meds! Let's get this all figured out! The best things about yesterday were that we looked at my CT scan together. There is NO evidence of Crohn's disease. None. Zero. Also, Dr. A does not want to do surgery of any kind until we get the systemic inflammation under control. And, to me, those are both fantastic, wonderful, positive pieces of news.

I'm at peace with the situation, and that's totally from God. While it's never fun when your doctor looks you in the eye and says, "You're real sick. This should not be happening, and I have no clue why it is," it was very encouraging that the doctors have a plan and are working together on this. And even more encouraging to know that no matter, what, God is still good and I'm still His child!

Hannah ;)

Tuesday, February 16, 2010

The Spiritual Side

This post may or may not make sense, but I wanted to give you a glimpse into what I'm really feeling as I'm going through all this. Maybe it only makes sense to me... I can't tell with my twisted, musing, under-the-influence-of not much-blood-and-lots-of-meds mind. ;) But I just wanted to share how God has been encouraging me lately.

After my conversation with the PA, I made a slightly freaked-out phone call to a roomie: "Oh gosh, what if I stay sick forever or have to drop out of the semester and have more surgery and have an ostomy forever and run out of enough guts to get by with or...." but by the end of like five minutes, God grabbed ahold of me and reminded me: "Hannah. You do not need to "what if." You do not know what your life will be like tomorrow. You are just a vapor that appears for a little while, then vanishes away."

The Spirit has continued to lead me to some incredible passages this week, like Psalm 77. The guy is writing about just crying to God in the night and feeling like He's not listening. Then he realizes, God hasn't changed at all. He starts remembering all the great things God has done for His people. And his perspective changes. It kind of reminded me of my reaction. I'm not proud of my sinful "what if" moments, but it's so cool how God can change them into glorifying Himself as I start to remember how great He is.

This is a sort of rabbit trail, but I think a divinely-guided one, so bear with me: I've been slightly obsessed with Romans 5:1-11 (my hope passage) for ages, so I just keep reading it over and over- as Matt Chandler would say, it's a warm blanket to the soul. ;) So I've been studying all around it, too. And there's this phrase in Romans 6:17 that has just stuck with me. It talks about how since we know and follow Christ, we've "become obedient from the heart." And that reminded me of another passage, Hebrews 5:8, where it says that Jesus "learned obedience through the things which He suffered." And I thought, so God wants me to learn to be obedient from the heart. Jesus learned obedience through suffering... uh huh, ya makin' the same connection I did? ;)

Which brings me to another favorite passage, Philippians 3, written by Paul, this guy who lost literally everything - his job, his identity, his dignity, absolutely everything he'd worked his entire life for - to follow Jesus. He writes that he considered all the stuff he lost up as rubbish compared to the value of knowing Christ. Now, I find it slightly hilarious that the word "rubbish" he chose actually translates more like a strong version of the word "crap." That's right, all my UC and pouchitis crap is just that - crap - compared to knowing Christ. And it's so true. And that brings me peace. And a giggle.

Okay, so thanks for reading all that. ;) Today I meet with Dr. A, so please pray for that he will be able to wisely plan the next course of action. I also contacted my GI Dr, and will be seeing him soon as well to get his perspective on this.

Hannah ;)

Sunday, February 14, 2010

Bad Day ;(

So, things have taken a slight turn over the past few days. Twitchy is getting worse and worse and worse. Last night was rough. I lost enough blood that I got lightheaded and very shaky. My roommate asked if I wanted to go to the hospital. I hesitated before saying no (which means it was bad, since it's usually an emphatic no). Today I almost passed out and have felt totally out of it... I mean, I've been way more anemic before from UC, but this is still scary, and emotionally, it's hard to feel this way again after having a major surgery that was supposed to fix this. I finally fell asleep for most of the day, and now I feel rather better, thankfully.

Some of the dizziness may be from my continued issues getting off steroids. I went down HALF a milligram (a teeny tiny decrease) a few days ago, but maybe that is contributing, so just to be safe, I'm going back up again. Hopefully that will help a little bit.

This weekend, I decided to just keep popping pain pills as I need them til I see Dr A on Tuesday. I feel awful doing that... but I'm honestly just pretty miserable without them, and they do help. Hopefully Tuesday will bring some answers.

The good thing is... God has given me a total peace about this situation. Honestly, I'm not in great shape physically, but in my soul, I'm okay with everything. God is giving me the ability to just look at this one moment at a time, without worrying about tomorrow or the future or anything. Because honestly, what else can I do but trust the One who's got this all under control? Look for a post in the near future about the cool things God is teaching me through this...

Update on my buddies:
  • Lisa, my Colorado "no colon, still rollin'" buddy has been my #1 fan... thanks for all the encouragement! She's totally "been there" with all the physical crap and knows just how to cheer me up tremendously! Keep remembering her in your prayers - she just has one more week til her follow-up to see if she's ready for surgery #2, and so understandably, she's starting to "what if" a bit! She is so ready to get back to a sense of normalcy. Hang in there, Lisa, you can do it! You are the sweetest ever, and you are going to get through this and do great!! One day we will meet and be cool J pouchers together, okay? Remind me to tell you about my tattoo I'm gonna get when this is all over! ;)
  • Steph is coming up this week to do her pre-surgery #2 tests, and will get "reattached" next Monday! So keep her in your prayers!
  • I hear Julia is doing great - please keep praying for her incredible family to keep their eyes fixed on Christ! It's got to be so hard to trust God with your little daughter as she goes through these big scary surgeries and the changes they bring!

A special thanks to each one of you who has called, emailed, facebooked, commented, helped... I can't even begin to express what a blessing it is. I would also really really appreciate any other good music suggestions, so if there's an awesome song that has helped you, please let me know so I can listen! ;) Thanks, Lindsay, for your suggestions!

Hannah ;)

Thursday, February 11, 2010

Thoughts

I've been thinking a lot about what I'm willing to do... how far I'm willing to go to keep Twitchy... here are my thoughts:

I think I want to try anything and everything to avoid surgery and keep the J pouch until I graduate in May. I'll try antibiotics, immunosuppressants, biologics, whatever (although if I have to go up on steroids, I will be incredibly irritated, lol). I have 13 weeks left in college, and I simply want to finish. I just need a new plan so I can deal with it for those 13 weeks.

After I graduate, then I can make the long-term decision. I can decide if I want the J pouch out and have a permanent ileostomy, or I can try out the reconnection surgery. Of course, this all depends on what the doctors are willing to do and how Twitchy responds to meds and time.

From what I've been reading, there are two theories: one is that "reattaching" my guts to the J pouch would actually help to heal Twitchy by giving him more nutrients. The other is that reattaching me would make him worse by introducing more bacteria and foods to the already inflamed tissue. From online discussion boards, I've seen stories on both sides about people who had pouchitis, then the second surgery. Some got better once reconnected, some stayed sick with pouchitis. The disadvantage to being reconnected with pouchitis is that it makes you systemically sick, not just in the pouch. I would basically feel like I had UC and probably have a harder time with food again.

I'm so happy to have a snow day!! I had a test today - so now it's postponed, yay! Now I can catch up/get ahead/work on finishing my Biochem incomplete. God is so good. And I slept last night (read: drug induced coma, but hey, that counts!!). Today, Twitchy is calmer and hurting less, thank God. Also, since yesterday, my joints are a lot less swollen and stiff! Praying that the antibiotics are kicking in! Pardon me, I'm off to play in the snow... ;)

Hannah ;)

Wednesday, February 10, 2010

Bad Convo With PA

Sorry for my slighly emo post from last night/early this morning. I didn't sleep much becasue I'm feeling so bad. :( I talked to Dr A's PA this afternoon, who told me that there's nothing they can really do for me. She suggested that I go to the ER, based on my symptoms (basically my body is totally destroying the J pouch from the inside). Don't worry, I'm not going to the ER; I'm not that sick and I have a big test tomorrow at school that I can't make up. Also I feel like they are trying to cop out a little bit. What will they do in the ER? Scope me again? No way on EARTH I am going under and letting some rando doc who's never heard of a J pouch stick a camera in me!

The PA also said that she didn't want to put words in Dr A's mouth, but essentially, she thinks I need to prepare myself for the idea that I may have to have the J pouch removed and go to a permanent ileostomy.

I don't totally buy this, because from my research, I know for a fact that there are several other antibiotics and medicines that are used to treat pouchitis. I really think that I need someone other than a surgeon treating this. Surgeons specialize in taking stuff out. So I think that they may be leaping to do this a little too quickly. Tomorrow Dr. A is supposed to call me, and we shall have a chat. If he's not willing to pursue or knowledgeable about other treatment options, I will ask him to refer me to someone who is. I hope at the very, very least to get some new ideas for managing the symptoms so I can be a little more comfortable but hopefully not drugged. Over the past few days, the discomfort down there has progressed to definitely being painful. I could take my harder core pain meds like vicodin... but I need to study!

I'd appreciate prayers for healing, as well as wisdom and trust in the Lord. God has taught me to not place my faith in doctors. I know that He can use doctors and medicine and surgery, but ultimately, He's the one in control of what happens in my body. I can't control what's happening in my J pouch, but I can control how I choose to react to this situation. I pray that I will honor Him.

Hannah ;)

Grumpy Post

So... I'm still awake... my J pouch is just spasming like crazy. Sorry for TMI, but it feels like having hiccups down there plus I'm on the verge of having an accident all the time. It's a very not fun way to live. And makes it hard to sleep when you're about to have an accident! Arg, this is one of the reasons why I had surgery - to get rid of that feeling! Poor inflamed, sick little J pouch. The last few times, the antibiotics helped within 12 hours of taking the first one, so I'm kinda frustrated that they are not really helping much yet. I know I should probably give it more time. I'm just going slightly crazy from feeling like this all the time.

My stomach hurt a little bit today, but it passed pretty quickly, which is good. Hopefully just a fluke... I'm pretty sure I have some scar tissue from surgery or something that's causing the stomach pain.

Today I started making a list of questions I need to ask my surgeon. They're the kind of questions that no 22 year old should have to ask their doctor... things I don't want to have to deal with, calls I don't want to make, quality of life issues... I'm having a slight pity party right now, sorry. I don't want a permanent ileostomy. But I don't know if I would be willing to consider doing lifelong antibiotics (which aren't even really working) or the next step, immunosuppressants, just to avoid an ostomy. But then, I don't know how much it will affect my body if I lose the foot or so of intestine that makes up Twitchy. Will I have enough guts left? I know that people everywhere have to deal with much tougher stuff than this, but right now, tonight, to me, it seems like a big deal.

I call, You hear me,
I've lost it all, and it's more than I can bear.
I feel so empty.
You're strong, I'm weary,
I'm holding on, but I feel like giving in,
But still you're with me.

And even though I'm walking through the valley of the shadow,
I will hold tight to the hand of Him whose love will comfort me,
And when all hope is gone and I've been wounded in the battle,
He is all the strength that I will ever need.
He will carry me.

I know I'm broken,
But you alone can bear this heart of mine.
You're always with me.

And even though I feel so lonely,
Like I have never been before,
You never said it would be easy,
But You said You'd see me through the storm.

Hannah ;)

Monday, February 8, 2010

Really, Twitchy?

The J pouch has been AWFUL today. I can feel that it's incredibly inflamed. When Dr A scoped it, he said all he did was touch the tissue, and it'd start bleeding. And it feels much worse now than it was then. My joints are swelling up, too. :( Dr. A's PA called me and agreed that I should try the antibiotics. I started them today, and I really hope that they help, and quickly. I just can't make Twitchy feel any better when it gets this bad. It is a most uncomfortable feeling.

The bladder pain/discomfort has improved quite a bit since the beginning of January, and I feel pretty hopeful that it will keep improving and resolve before my re-assessment at the end of March. Still feels like I have a constant UTI, but it's very manageable and feels a lot better if I just take the medicine.

I appreciate your continued prayers for wisdom with doctors and stuff, for provision for school, and for the pouchitis to heal up!

Hannah ;)

Sunday, February 7, 2010

Feeling Better! Well... Except for Twitchy

My stomach stopped hurting yesterday evening and has felt pretty good all day! So I ended up having a good weekend, and both ate and slept. Yay! ;) I don't know what I did or didn't do... I'm just thankful it's totally gone. I feel like it will stay away... stay away... stay away!! It did mess me up pretty good - I'm now down like 8 or 9 lbs from where I was a couple weeks ago. No worries. When it doesn't hurt, I eat! It'll come back soon enough.

Unfortunately, Twitchy is going downhill again. He's spasming ALL THE TIME. Makes me crazy. It's waking me up at night again - but the good news is - since my stomach wasn't hurting last night, it was easy to fall right back to sleep. Yay!!!! While it's as annoying as all get out and I can't find anything that makes him stop twitching, it's better than being in the fetal position from my stomach hurting! My joints have been getting progressively stiffer and more swollen this week, which is frustrating. That was totally gone after surgery. However, pouchitis can cause arthritis to return in people like me who had arthritis with their UC. When the pouchitis gets under control, the arthritis will go away, too! Just another piece of evidence that the pouchitis isn't gone yet.

I really think that that antibiotic helped. Both times, for a few days after I took it, my J pouch felt... totally normal. No spasming. Very little bleeding. Like a miracle. Twitchy's never felt that good since his creation! I'd really like to try taking the antibiotic, but Dr. A said, "I don't want to just stick you on antibiotics." So instead he's given me steroids and Valium and Tramadol to try and calm down the spasms?! I'd much rather take an antibiotic than Valium (I'm slightly terrified of taking it - took it over Christmas and fell into the bathtub when I had to get up!) and pain meds and steroids! Haha!

I really think that while my surgeon is a great guy, and the only person I've ever allowed to cut me open... he's maybe not too good with the medical stuff. Surgery - he's awesome. But whenever he decides to call me back, I'm going to ask him if it would be more appropriate for my GI Dr. to treat my pouchitis and whatever's going on with my stomach.

I really appreciate your continued prayers - for the stomach pain to stay away, for the pouchitis and joint stuff to stop!

Hannah ;)

Friday, February 5, 2010

CT Results

I got my CT scan this morning. The TCU Dr. read me the report. Everything turned out okay. No problems in my stomach or intestines, praise God! Yay! There is a mass again like I had in December - looks like a 4 cm x 4 cm mass on my ovary. The women's Dr told me it could wax and wane, so I'm not concerned about it. They can cause pain, but my pain isn't anywhere near there, so I don't think that's the problem.

So... I'm really, really glad that nothing is wrong! But the question still remains: why does my stomach hurt? It got better last night for a while, and I slept some last night (YAY!), which was fantastic. Unfortunately, my stomach hurts again today, but it could just be upset from all the junk I had to drink for the scan.

It definitely feels like the pain is in my guts. I really think that I'm having some kind of obstruction off and on, so I'm just gonna back off things that are hard to digest and stick with simple soft stuff for a while. Hopefully that will help. By the time the TCU Dr got the results and faxed them to Dallas, Dr. A was already gone for the week. I guess I'll hear his perspective on Monday. I will also try calling my Ostomy nurse to see if she has any ideas. TCU Dr did say I could try taking Benadryl at night to try and get some sleep, since I've been having so much trouble sleeping because of pain. My ability to function and my pain tolerance really go down when I don't sleep, and I start getting migraines. My body just gets really worn out. It's a vicious cycle. So hopefully a good night of sleep will be the best medicine for me.

Thanks so much to everyone who has called, emailed, messaged, and hung out to encourage me this week... each of you means so much to me. I know God sent each of you into my life with a purpose, and I feel incredibly blessed to have such a great support system. May He return blessings on you for your kindness and thoughtfulness! I truly appreciate prayers for a night of good sleep, for my stomach to feel better, and for the pouchitis (which has been worse today) to improve! Also that I'd just keep my eyes fixed on Him!

Hannah ;)

Thursday, February 4, 2010

CT Tomorrow

Well, the doctor finally called back yesterday. He didn't really have any suggestions for things to do to help, but said we need to do a CT scan ASAP. They couldn't get me in til Monday, which is still pretty soon, but seems like forever if you feel gross.

I didn't sleep at all last night. Just felt pretty bad. :( Boo. But my roomie and I cuddled... made me feel better, lol.

Today I went to see the TCU Dr. just to make sure I was okay. Because I wasn't sure. He got all mad that they couldn't scan me til Monday. "I mean, do they wanna be a part of the problem or a part of the solution? This is so ridiculous. There's always a way. Incompetent bureaucracy..." He got me a scan first thing tomorrow morning and called Dr. A's office to let them know. :) My hero.

He thinks my J pouch's days are numbered. His thought on the stomach pain is that it's probably from a stricture (narrowing of the intestines) or an adhesion (scar tissue growing and tying up the intestines), which could be a result of surgery... or could indicate that I actually have Crohn's disease.

I really appreciate your prayers! I'm a little sad to be feeling this sick again. But I know that God is in control of this and will work it for His glory. Julia's mom (remember, Julia had a colectomy recently), Sasha texted me the other night and encouraged me to pray Psalm 91. What a wonderful Psalm, and exactly what I needed to hear...
"He who dwells in the shelter of the Most High
will rest in the shadow of the Almighty.
I will say of the Lord, "He is my refuge and my fortress,
my God, in whom I trust...."
"Because he loves Me," says the Lord, "I will rescue him;
I will protect him, for he acknowledges My name.
He will call upon Me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him,
With long life will I satisfy him,
And show him My salvation."

I love how God doesn't promise that there won't be trouble, but He promises that He will be with me in trouble, and rescue me and show me His salvation. God can't show His salvation unless there's something to be saved from! My responsibility is to love Him, and trust only in Him.

Hannah ;)

Wednesday, February 3, 2010

The Drama Continues...

Unfortunately, my stomach started hurting a lot again yesterday. I called the doctor a couple times yesterday (like I was supposed to), but they still haven't called me back, which is a little disconcerting. I'm not sure what to do. I don't feel "hospital bad," but it's definitely NOT normal. Something is going on. I'm more or less comfortable most of the time if I take some pain meds... but I should not be having this pain.

The pouchitis was a lot worse Monday night into Tuesday... despite the meds. Frustrating, since it felt so so much better on Thursday and Friday after the scopes. I realized that they gave me one antibiotic pill after the cystoscopy (bladder test) to prevent a UTI. Maybe that's what helped Twitchy? Only one way to tell... This is horrible, and no one should EVER do this... but I have a bunch of that kind of antibiotic left over from one of the kidney infections (they kept switching antibiotics on me), and the J pouch was driving me crazy, so I took one yesterday morning. By afternoon, Twitchy was doing better. He's still doin' okay today. Hmmm... maybe I can try taking it for a while to see if it might help. When it gets bad, like yesterday, it is such a horrible feeling that I get pretty desperate for something to help. Obviously, I will ask my doctor before taking any more. If he ever calls back. :(

I'd appreciate prayers for wisdom! That the doctor would call back or I'd know if I should seek help somewhere else. That we can figure out what's going on with my stomach, and that the pouchitis would go away.

Hannah ;)

Monday, February 1, 2010

Drama Drama

Hi, everybody!

Well, so much for the stomach pain being gone! Saturday night and Sunday were pretty rough with lots of stomach pain. I don't know if I'm having a partial obstruction or what's going on, but I felt lousy. I started running fevers again, too.

It was bad enough that on Saturday night, I actually considered going to the ER. On Sunday morning, the pain returned and wouldn't go away. I called the doctor on call, who didn't understand my umm... altered anatomy, so he didn't understand when I tried to explain what I'd had removed and scoped and how my GI tract works. I was supposed to "Take a tylenol and try to get in to see your doctor in the next week or so." So I called back and thanked the answering service for the prompt reply, but I needed to speak with a GI doctor if at all possible. They were able to find one of Dr. A's interns. He had a much better grasp of the situation. If my fever got above 101.5, I started throwing up, or my pain got too bad, I was supposed to come in to the ER. Otherwise, he told me to just stick to liquids - no food - and take pain meds. I was pretty miserable all day. I finally fell asleep this morning around 2 am, with the help of a bunch of meds.

I woke up with my stomach feeling much better, thankfully! Dr. A's PA called this afternoon to check up on me. She asked why I hadn't come in to the ER. Really? I'm allergic to hospitals... achoo! ;) She told me that not eating was not an option; I have to eat. So I started eating tonight... hopefully all goes well and the pain doesn't return. If it comes back, I have to call Dr. A and most likely go to the hospital. There is just too much going on with me to mess around with this, apparently. I'm still running a little fever and feel pretty wiped (probably from not eating much on Sunday and today). The pouchitis is doing okay; not as good as the last few days, but I forgot to do my special 'roids yesterday (Oops. Don't tell).

Please pray that my stomach will keep on working right! And that the pouchitis will go away.

Thanks to everyone who took care of me this weekend... friends... siblings... mom... dad... roomies. Sorry for the trouble. But... I mean... really... life would be SOO boring if everything worked right! Nothing like a little drama to shake things up!

Hannah ;)