Saturday, January 30, 2010


Hi, everybody!

Thanks for all the encouraging comments and prayers!

I am SOOO thankful that the first scope looked great. The fear was that I was developing a new chronic autoimmune condition. Praise God that it's something that may go away with time. If not, it's just a quick fix (although, how sad I look at a surgery as an easy fix. *sigh*).

The pouchitis wasn't really a huge surprise to anyone. The pictures from my scope look pretty awful. I had this feeling it wasn't normal to have constant spasms and "poop" blood 9+ times a day... Twitchy has been feeling the best it's ever felt since the scope. I don't know if it was the medicine they gave me to sedate me, if Dr. A did something to my pouch, or if the localized steroids are already helping, but whatever it is, I'm not complaining. It is bothering me a lot less, praise God.

Yesterday I felt horrible. My stomach was killing me. I'm pretty sure I had a blockage for most of the day. Finally, after several hours of pain, I drank a bunch of grape juice, which is supposed to help blockages. Within a hour of drinking, I was having some relief. I didn't eat anything "big," and I always chew carefully, so my guess is that my system is just a little traumatized from all the scoping yesterday! I also was running a fever. Maybe I just had a little bug. Whatever it was, it's gone now, thankfully.

I had also been taking a medicine to "numb" my bladder. The PA asked me to stop taking it for 2-3 days to see if it was helping. I don't know if I'm still just sore from the test, but let's just say that it was helping a LOT. Without it, I feel pretty miserable. I'll restart it tomorrow.

Thanks for your thoughts and prayers. Please pray that the pouchitis will go away and not return. If it doesn't, I have a strong feeling that they will have to remove my J pouch. Three rounds of antibiotics haven't gotten rid of the pouchitis, and I can't take the UC meds that are the next step in treatment. I am also really struggling any time I decrease my oral steroid dosage even a tiny, tiny bit. My heart rate goes nuts and I shake really bad and can't think straight.

Last I heard, Julia is doing fantastic. :) Steph got the green light for surgery #2. She's scheduled for February 22! Praise God for the renewed health all my ex-UC buddies are discovering! What a fantastic blessing we've received to have such an appreciation and thankfulness for our health.

Hannah ;)

Thursday, January 28, 2010

Scope Results

I'm reallly tired from the anesthesia, but a quick update:

Scope of bladder was fantastic! No sign of inflammation at ALL! Praise God!
Tests show some mild abnormalities in the structure and function of everything. Taking my history of infections, surgery, and multiple catheterizations, the PA thinks I have some scar tissue narrowing, which makes it difficult and painful for me to void. It has improved some over the past week, so we're taking a watch and wait view and retesting in about a month or two. If it doesn't improve, I'd need a minor surgery to widen the narrowing.

Scope of Twitchy... I have pouchitis. I'm starting some localized steroid treatments every day, and in two weeks, I'll go back and see how I'm doing and where we go from here. He mentioned some other meds we can try, but they aren't paths I'm willing or able to take. So hopefully everything improves!

Praise God for a positive day with some answers. I'm at peace and trusting in Him, and thankful for His constant presence.

Nap time!

Hannah ;)

Wednesday, January 27, 2010

Scopes Tomorrow :(

Tomorrow I go in for two scopes.

Scope 1 is a scope of my bladder (who knew they could do that?!?). The nurse who did my other kidney test a few weeks ago thought that my symptoms pointed to an inflammatory problem - basically like UC in the bladder, from how she explained it. Whatever it ends up being, hopefully they can find something to make it feel better. 'Cause it hurts.

Scope 2 is for Twitchy the J pouch.

Here are my thoughts on the possibilities:

1. Scope shows nothing. Then I'm stuck with a J pouch that sends me running to the bathroom and bleeds and cramps all the time?

2. Scope shows that I really have Crohn's disease, which is like UC, but can happen anywhere in your body. I would need to find some new hard core meds to keep it in check.

3. Scope shows I have pouchitis (I still giggle every time I say that. Sounds so unscientific). In that case, they treat it with antibiotics (which I've tried. Helped some, but not tons).
Then I think they may start adding back in the hard core UC meds.
If they don't help, the J pouch would be removed, and I'd keep Squirt permanently. Which isn't the end of the world. But does kinda stink. And according to Dr. A, I'd need vitamin shots for life, since my guts won't have enough length to absorb all the nutrients.

I don't like any of those possibilities. ;(

Thankfully, I do not have to face any of these things today. God is in control of this and every situation, and He'll keep working for His glory. "My grace is enough for you, for power is perfected in weakness." Therefore, I am well content with weakness for Christ's sake, for when I am weak, then I am strong. May He be honored, regardless the outcome.

Hannah ;)

Tuesday, January 26, 2010

The Dangling Conversation

This morning after class, I proceeded to the Ladies' Room to play with Squirt, as I euphemistically term the emptying of the ileostomy bag.

Another girl was in the second stall. I paused, feeling slightly awkward to break the silence of the basement bathroom by emptying the bag. What if she heard or noticed or something?

Thankfully, all my fears were allayed. While doing her business, Mystery Girl's phone rang. She answered it and began a shouted conversation with some long-lost relative calling to wish her a happy birthday. She didn't miss a beat as she continued to tinkle, etc. and flush. As I could actually hear the voice of Long-Lost Relative, there is no way that he could have missed hearing the unmistakable acoustics of an industrial toilet flushing in a tile-walled restroom.

And I thought my bathroom habits were strange.

I suddenly found myself completely lacking qualms about emptying my bag with this girl in the room.

Hannah ;)

Sunday, January 24, 2010

I don't wanna.

I'm lazy.

If I could, I would spend all day just sleeping and laying (or lying? I can never remember. But lying is bad, I'm told...) around.

This was what I was afraid of. That after surgery, I'd get lazy. Now it's happened, and I don't know how to get out of this.

I'm not working hard at all, but I'm exhausted all the time. My body hurts. I can't focus. I can't think straight. I forget everything. My brain is all mushy.

Then I remember. This complete apathy and inability to focus and tiredness happens to me every time I come down off steroids. Why? I don't know.

But that doesn't make my apathy and laziness and lack of focus right. Where do I draw the line? Where does it become sinful for me to give up on studying because it is so hard for me to get anything into my head? When is it wrong for me to take that nap or sleep in because I can, to the degree that time with the Lord, study time, or nutrition suffers (I get so tired I'd rather sleep than eat. Therefore, I've lost four pounds since I came back to school)? Clearly there's a line. I just don't know where it is.

Do I push myself? Do I not? I want to work out. But I'm so tired that I don't even want to get out of bed. I study for hours and accomplish close to nothing. It's so frustrating. Then I get a bad attitude and don't even want to try, because I feel like there's no point.

Soooo... here's my practical list of things to do this week to help myself get going:

  • Get out of the house by 9:30 on MWF (the days I don't have morning classes) to study/work out/do something productive. That's plenty of time to sleep a lot if I need to, but still get a few hours of homework in before classes start at 12.
  • Spend two hours a day studying outside my house.
  • Make lunch the night before! Even if I'm tired! Especially if I'm tired!
  • No matter what, spend time with the Lord in prayer and in the Word every day. No excuses.
With God's help, I hope to get out of this cycle of apathy and laziness. I can't control how my brain works (or doesn't work) or when my body feels tired or hurts. BUT - the circumstances don't matter. I can be content and honor God in my attitudes and reactions in any and every circumstance through Him who strengthens me (Philippians 4). God doesn't tell me to do things only when I want to and when they are easy. I do them because they are RIGHT in His eyes.

So excuse me... I need to pack lunch and finish my homework for tomorrow. ;)

Hannah ;)

Thursday, January 21, 2010


Today I've had a few reminders...

I have come SO far. Yes, I'm still struggling with pain issues. But they are different than the constant, horrible stomach pain I had before surgery. I wake up every morning withOUT cramps and stomach aches. I don't walk around clutching my stomach. I don't curl up in a ball during class. I can eat. I can walk up stairs without my joints groaning. No, everything is not perfect. But I'm so much better than I was, and my quality of life is probably about 500% better now.

Today I saw an advisor who hasn't seen me since before surgery. She commented on how much livelier I look, with color in my face and a spring in my step. My advisor struggles with some very serious health issues, which have resulted in her life motto: "Life is hard, but God is good." She told me that it may sound trite, but it is so true. We have this expectation that life should be great; that it should be heaven on earth. But God made no such promises. Really, He promised that in this world we would have trouble. Trials, pain, sickness, sin, suffering - all a result of living in a fallen world. This earth is not heaven. But God is still good, all the time. Life is hard so that we'll learn to trust Him alone! Even when life is good, but especially when life is hard, knowing God is truly better than anything.

But sometimes I need to be reminded of that.

Hannah ;)

Wednesday, January 20, 2010

Holding Pattern

Hi everybody!

Julia's home and doing well. Thursday night and Friday were very scary; she had really severe pain that the meds weren't even touching (sound familiar?). Tests didn't show anything bad, thankfully, and after many hours, they were finally able to control the pain. She got to go home! She's doing better each day. Please keep praying for her recovery. Also remember her mom. Pray that she'd be able to keep going even though she's exhausted!

I'm doing about the same. Just tired and stuff. J pouch is goin' nuts. Nothing is really helping it again, even though I'm still taking the antibiotics. They helped a LOT for the first week or so, but they are not helping now. Another call to Dr. A may be due for that. Bladder stuff still hurting. I still don't know anything for sure about whether or not I'll be in school. I'd appreciate prayers for wisdom. I just want God would lead me clearly in the direction that will bring Him the most glory.

I am just living every day with uncertainty of what tomorrow will bring. Honestly, though, that's how we're all supposed to live. Matthew 6 tells me how wonderfully God provides for the grass and the birds. So I don't need to worry about my health or how I'll pay for things or anything. Verses 33-34 say: "But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Amen!

Hannah ;)

Tuesday, January 19, 2010

Letter to My J Pouch

Dear Twitchy,

I hate you. I really do. What is wrong with you? You were starting to behave yourself again, with the help of antibiotics. Why, oh why do you want to torture me again? Are you jealous of all the attention Squirt gets? Twitchy, your time to shine will soon come, don't worry. After the next surgery, Squirt will be back inside, just another inch of intestine, pushing food along, while you will have a more noble task, with plenty to keep you busy. Also, although I know this isn't at all true, I have decided to blame you for the fact that I feel like I have a constant UTI. You've been whispering to all those organs down there, telling them to misbehave, haven't you? I'm on to you. So please, please, enough with the pageantry already. Just take a nice little nap until May. Please. Or I will ask the doctor to take you out of my body forever and give Squirt a makeover instead. No joke. Then you'll be sorry.

Hannah ;(

Thursday, January 14, 2010


Wanted to let y'all know... Julia is supposed to be discharged today! They are very anxious to get out of the hospital! At the same time, though, continue to remember them in your prayers. Going home will bring some new challenges as they adjust to the "new normal" of dealing with an ostomy. While this is a huge surgery, it was a great decision to really help Julia to lead a normal life instead of being constantly sick or on dangerous medications. She's been sick since she was little. Praise God for the health these surgeries will bring.

I called urology yesterday, since I've been having a LOT of pain down there at times and I'm not sure how to best manage it. After a lot of phone tag, the frustrating answer was (and I quote): "Keep doing what you're doing. If it gets worse, go to the ER." Since I have so much going on, they don't wanna touch me with a ten foot pole - my history of autoimmune stuff, recent surgery, the mass, being on steroids, having pouchitis scares them. "We can't just treat your pain without knowing what's causing it." I understand, so I suggested that I could come see them. Unfortunately, there are NO available appointments with any providers for weeks. I asked what they would do in the ER. She said, "Give you pain meds and do a CT scan." I reminded her that we JUST did a CT scan, which led to no answers, so the ER would also basically be treating my pain without knowing what's causing it. I can't move my appointment (which is for more testing and evaluation) any sooner, so I can't find out what's causing the pain. In the meantime, I'm sort of stuck. It's frustrating because, yes, I'm complicated, but my TCU Dr passed me off to the Infectious Disease Dr, who passed me off to my GI, who passed me off to you people at urology who can help me... if I can wait til the 28th.

Sorry for the rant. ;) I am really doing okay - the pain is fine with the current med plan during the day, but gets worse in the evening and at night. But I'm not ER sick by any means, and I dealt with much worse pain on a daily basis for the last year or so. It's just a "new" pain, I didn't know if it's a bad thing, and my post-surgery belief is that I shouldn't have to live in pain. I just wanted to know if I could do anything differently to help me towards that goal. My other belief is that I really shouldn't have to take pain meds to live pain free... but one goal at a time... ;)

My parents really are pushing for me to get an internist or something - someone who would sort of oversee everything - but I have no confidence that adding ANOTHER doctor into the mix would be helpful. And I am firmly hoping that ALL this stuff will resolve. Also, TCU Dr plays the role of overseeing pretty well for me. He's taken care of me for four and a half years, so he knows my baseline - what's "normal" for me and what's not. And he helps me navigate my care and has definitely done a lot to increase my quality of life since I got diagnosed with UC. While he doesn't always know the answers, he knows what questions I should be asking my doctors.

I've also been very shaky and feeling weak, tired, and had no appetite for the last few days, on top of the pain and recurring migraine, so I decided enough was enough and visited the TCU Dr. He agreed that going to the ER was stupid advice, and gave me several different things to try for the pain. My vitals looked good -I was worried my blood pressure might be dropping, so that was a relief - but we decided I need to stay at my current dosage of steroids until I stop shaking, etc.
Hannah ;)

Steroids and Steroids and Steroids, Oh My! Part II

Today was supposed to be my last day on steroids. I've been counting down the days for quite a while.

But the last few days, I've been shaky and tired. We all know how poorly my body handles even a slow steroid taper. So, based on how I've been feeling, I think going from 5 mg (although that's a super low dosage) to nothing might put me back in adrenal crisis mode. I'd prefer to avoid that.

So... I refilled my little weekly pill container with 'roids, and will continue 'roiding it up for the next four weeks, at least. Guess I should make a new little countdown calendar. In the meantime, I'm enjoying my little dimpled chipmunk cheeks! They are kinda cute.

Hannah ;)

Wednesday, January 13, 2010


I had my urology test... it was reallly painful, although I don't think it was supposed to be. The nurse thinks my bladder may be inflamed (cystitis?) or something, which would make it hurt like that. But we'll see what the PA says in two weeks when I see her. I hope I make it that long! This stuff really hurts! My headache made a comeback, too, and I just felt sort miserable. The good news is that the pouchitis is doing a LOT better. The J pouch is still spazzing on occasion (Joseph has christened my J pouch "Twitchy"), but it's just for several seconds, instead of constantly.

Still no official word on what my semester will look like school-wise. So I'm just goin' to classes (I really like two out of three. The third class - Physics II - will just have to be endured)! I started volunteering with Hospice again today. I took a leave of absence in October when I went to the hospital. It was great to visit with my 90- year old friend. I've missed her.

Keep praying for Julia! She's still in the hospital. She's doing well, and got to start eating today! It's just a looong process. And of course, the aftermath of this surgery is such uncharted territory - you never know if the weird things you're feeling are totally normal or mean something really bad! Also please remember her mom, who is so tired and missing her other kids.

Hannah ;)

Monday, January 11, 2010

First Day of School!

Today was my first day of school... there's a lot of uncertainty because I don't know if I can actually stay in my classes, since my scholarship wasn't renewed. So my first stop was the Financial Aid office. They were very nice, and it looks like I can at least stay in two classes. Maybe I can talk my dean into allowing me to take the third class at another college. Then I could transfer it in, and graduate! But we shall see.

Next stop was the Athletic Academic office - I wasn't sure how just being in two classes would affect my athletic scholarship (which I kept, thank God - it pays for my housing). Judy (my advisor) is basically amazing. She is like a second mom, knows all the connections, and has essentially been my champion for the last couple years as I've struggled to stay up with school while battling UC. She thinks she may actually be able to find a bit more funding for me so I can take that third class (all I need) to graduate this semester! So we're working on that.

I feel so very blessed. I feel like everyone at TCU is really pulling for me. God's provision for the last 4.5 years has been simply incredible, and regardless of the outcome this semester, I pray that my reactions will honor Him!

I'm feelin' still kinda lousy. I'm a little discouraged about that, but I am hanging in there! Having a lot of pain in my front and in my pelvis? I guess from my bladder? I have more urology tests tomorrow. Then on the 28th I have another test, and will see the PA again. I tried to move that appointment sooner, 'cause I'm so uncomfortable, but I can't. Hopefully they can figure out what's goin' on down there! Maybe it will be a quick fix. I've also had a migraine since Sunday... grr. I think my J pouch is settling down a little bit - not bleeding so much - so hopefully the antibiotics are helping that.

Julia could still use your prayers! Seems like God is providing encouragement at just the right moments, but I remember how discouraging and scary it is to be in the hospital. You feel like you're never going to get any better and never going to get out! Let's pray that God will protect Julia and her family from any discouraging thoughts or fear. Also, pray that her body will recover well from this surgery! Hopefully she can get some tubes out soon and start drinking liquids. She is a real trooper!

Steph had a brief hospital scare today... she's having some issues with shaking and her heart rate is very high. I think there was some concern that she might have a clot, but she's back home now, thankfully. They think her problems come from an overactive thyroid. Continue to pray for her to regain complete health!

Hannah ;)

Thursday, January 7, 2010

Prayer Requests and More Clinic Visits

Please continue to remember Julia and her family in your prayers. Her surgery was a success, but she is having a ton of pain. The doctors have been so helpful and are using some creative approaches to manage her pain, but I think it's still a struggle. I know God is in control - it would seem good for this 11-year old to have relief from this extreme pain and that her parents would not have to watch that kind of suffering. Please pray that her pain will go away! Also, please pray that Julia and her mom will adjust well to caring for her stoma. I know that God will be honored by their complete trust in Him. Their faith is so strong and it's an encouragement to me, and I'm sure all around them.

I saw the Urology PA yesterday. We looked at my CT scan together, and it's clear that the mass is NOT pushing on my bladder, which is good. UPA thinks that my urethra may be damaged from trauma from surgery or catheters. I may have scar tissue partially obstructing the flow, making it hard to empty my bladder, which causes the bladder to spasm to try to "push" out the pee. This irritates everything, and the cycle continues. The fix for this is a minor surgery to dilate my urethra. The other possibility is that my bladder is inflamed from all the infections I had. So more tests and stuff next week to see what's going on there. In the meantime, UPA gave me some medicine to numb the bladder and help with the pain I'm having down there.

I also had a sonogram done to visualize the mass. Lady Dr. called me shortly thereafter, and said a bunch of nonsense about the test showing "something clot something corpus luteum something" in an excited tone. I just didn't say anything, because I had NO idea what she had just said. I think she realized this, then said, "The mass is a blood-filled ovarian cyst, and it's going away!" Oh. OK. Why didn't you say so? ;) So the mass is not causing my pain and UTI symptoms, and it's going away! And I don't even have to go see Lady Dr. again! Yay! She's nice, but I never have ANY idea what she's talking about! Praise God that this mass is going away - we were talking surgery if it wasn't any smaller.

I talked to Dr. A's PA about the J pouch problems. She thinks (and so do I) that I have pouchitis. Dr. A isn't totally convinced, because he has never seen pouchitis before the second surgery - the J pouch isn't being used yet. But he's treating it like pouchitis anyways. So I started some antibiotics for that. Hopefully it will go away. Basically, it's UC coming back. It can be acute - like just for a week or so - or it can be chronic. That scares me. Hopefully I'm in the acute camp. ;)

I also found out today that my appeal to have my scholarship renewed for this semester was denied. I've been so incredibly blessed to have received full scholarship for four and a half years! I am not sure what I should do now... school starts on Monday, and I just found out today (the committee met on Wednesday). I am not worried or upset about this - I know that God will provide and lead me wherever He wants me! I just want to be sure I'm doing what He wants! Is this His way of leading me to not take classes this semester or to not finish my degree here? Or does He want me to find other ways to fund this last semester? I'm not sure. I'd appreciate prayers for wisdom. Since school starts on Monday, I need to make these big decisions quickly.

Hannah ;)

Wednesday, January 6, 2010

Pray for Julia!

"I will be okay, because God will be with me!! I am putting all of my trust in Him, all the time everday!!!!"

Please pray that Julia's surgery today (see post two days ago for her story) will bring complete healing with no complications,
That her doctors will be skillful
That her family will be comforted
That she would have no pain
That she would not be frustrated with all the tubes and wires
That she would be blessed with kind, skillful nurses
That the peace of God would guard her heart and mind!

Psalm 66 is my prayer for you today, Julia, my sister... that God brings you through these hard times to a place of abundance, so you can tell others what He's done for your soul!

Hannah ;)

Tuesday, January 5, 2010

Visit to the Women's Clinic

Today was my appointment at the women's health clinic. I still don't feel like I have a great understanding of what's going on, but here's the important stuff:
  • Lady Dr. feels very confident that the mass is NOT cancerous (umm... YAY!), but that it's an ovarian cyst associated with my cycle. That being said, it is a rather big mass that's causing problems. I may need surgery to remove it.
  • I'm getting a sonogram on Thursday to visualize the mass better. This gives Lady Dr. a better idea of what to do next.
  • Lady Dr. would like me to start birth control. This would help prevent these cysts from developing in the future. Apparently, this can become a chronic problem. Also, since surgery, my periods have been worse, but Lady Dr. thinks this is a good thing - the changes mean I'm actually healthy enough now for my body to work properly - it wasn't before surgery! But the Pill would help with the cramps, etc. I'm gonna need serious convincing before messing with my hormones and taking more meds... despite everything, I really hate taking medicine. So I'm holding off on the Pill.
  • I saw one of my favoritist nurses from after surgery today at the clinic! She thinks I look so much better - less skinny (is that a fat joke?). She's great.
  • Parking is $4! What a gyp! Boooooo.
Please pray for Julia (see previous post), as she faces surgery tomorrow!

Hannah ;)

Monday, January 4, 2010

Prayer Requests

Hi everybody!

I'd like to ask you to pray for a few UC/No Colon Club buddies.

Lisa had surgery about a month ago and got out of the hospital in world record time! She had an extremely difficult time before surgery. She is struggling with some frustrations and feeling down. She's been so sweet to be an awesome cheerleader for me, especially as I've been a little depressed lately! She's always there to offer support and a boost! Please pray for her physical healing, compassion from her friends and loved ones as she adjusts to this sometimes very frustrating "new normal," as well as for a big dose of encouragement! All the physical stuff she's handling is tough enough. The mental aspect is maybe even harder. It DOES get better, I promise... We are rooting for ya, Lisa!

I've mentioned Steph before. She had surgery around Thanksgiving, and had just about every horrible complication possible after surgery. She is possibly the most energetic and tough person ever! She continues to struggle with some post-op difficulties. Never one to sit still, she's juggling returning to work with taking care of her two absolutely adorable kiddos and being a great wife! I had the extreme pleasure of seeing her and meeting her family this weekend! What a treat! And what a great family. ;) She has her follow-up appointment with the surgeon tomorrow. Pray that all her complications would heal up and go away, wisdom for the doctor, and strength as she returns to work this week!

Julia is 11 years old. She is facing surgery #1 on Wednesday. She is an amazing young lady with incredible faith in God. She is a combination of being excited and scared for this surgery. I have been so challenged and inspired by her perspective and sincere trust in the Lord. I want to share a few of her thoughts. These are direct quotes from Julia. I trust you will praise God for His work in her life. I can't imagine what all God's gonna do through her, but it's going to be huge and great for His kingdom, I am 100% confident:

"I am a little nervous about [some parts of surgery and recovery, but] I will be ok. The LORD will be with through all of it so I know I have nothing to worry about!!"

"All I think about is that when the LORD created the earth that He knew that you were gunna be sick and then I was gunna get sick and then we were gunna meet! God is so amazing!!"

"I will be okay, because God will be with me!! I am putting all of my trust in Him, all the time everday!!!!"

If witnessing her faith was the only reason I went through all this, it was worth it. What a blessing she is to me. I praise God for Julia! Pray for courage as she faces surgery, strength for her awesome family, and skill for her doctors!

Thanks for remembering these three in your prayers! Each of them has the coolest story and is truly great, as I hope you can tell!

Hannah ;)

Friday, January 1, 2010

This Picture Just Makes Me Happy

My big sister and I on Christmas Eve in the SNOW! My first White Christmas. I love this picture. I also love that I look taller than her... in real life, I'm shorter, but it looks like I'm the tall one here! ;)

Sorry for my grouchiness lately. I'm doing better mentally, although I'm only a little better physically.

Tuesday I go to the women's doctor. After being repeatedly told I couldn't be seen til the middle of March, Dr A's PA pulled some strings and got me this appointment. I'm very thankful for the PA - she is a winner. The women's doctor is supposed to know more about the mass, if it is the source of my pain and issues, and what should be done.

I got some hints from the stoma nurse on how to keep my guts where they should be (inside!!). Just wear stockings to sorta give pressure! Why didn't I think of that? It's working pretty well so far. She had some interesting theories. I don't know how scientific this is, but she said I probably have hyperactive intestines (which I'd believe). Since they are so active, I end up with the prolapse thing, and J pouch spasms. Although she emphasized that she's no doctor and can't diagnose, she believes I have pouchitis (yes, a real term), which is basically when UC comes back in the J pouch. Some of the symptoms are cramps, fatigue, bleeding and "false urges" in the J pouch - all of which I have right now. I'm going to continue to pursue options to help the spasms. Since my surgeon doesn't have any other ideas for helping the spasms, I'm gonna see if he knows someone who does! Maybe my GI Dr?

Just sitting tight til my appointment on Tuesday!

Hannah ;)

2009 By The Numbers

231 Consecutive days of keeping my New Year's Resolution (no hospital visits)
21 Days I spent in the hospital this year after breaking said resolution (not too bad, tho!)
7 Remicade infusions
80/45 Lowest blood pressure during an infusion
18 Day of July when I began my LAST UC flare
4 Times a day I had to go to the bathroom on a good day when I wasn't flaring
20 Times I went to the bathroom on a bad day
93 Days on steroids
14 Day of October when I had my surgery, ending my LAST UC flare
6 Feet of intestine Dr. A removed
4-6 Weeks I was told to expect to be out of school for recovery from surgery
2.5 Weeks I was actually out of school after surgery
0 Days of work I missed this summer (I'm very proud of this)
7 Weeks of school missed (not so proud of this)
3 Quarts of ice cream I consumed in the first month after I went back to school
50 Apples I estimate I've eaten since surgery
20 Pounds I lost this year
10 Pounds I've gained back
286 Nights I slept curled in the fetal position with my heating pad
0 Nights I've slept with my heating pad since surgery
7 Doctors currently treating me


CT Scans, X-Rays, blood draws, pills, doctor's appointments, sleepless nights, rolls of toilet paper (lol), bottles of gatorade, failed IV start attempts, days when I ate less than 500 calories, times I did NOT go to the hospital (although advised to), cards I got after surgery, times friends and family have dropped everything to be there for me, spiritual lessons God has taught me.

As you can see, it's been a year of ups and downs. While I have learned so much, I admit I wasn't terribly sad to say farewell to 2009.

I have no idea what 2010 will bring. Here is what I think may happen: I hope to graduate from TCU in May, have my second surgery, and get a job before my insurance runs out in August, take Organic Chemistry II this coming fall and study for the MCAT. But all this could (and probably will) change. Maybe even by tomorrow. I am just a vapor that is here for a little while, then vanishes. If the Lord wills, I will live, and also do these things.

Most importantly, I hope I grow to be more like Jesus this year. I am not so much about accomplishing earthly goals like graduation and a specific career. I would much rather just follow where God leads me. If He leads me away from the path I'm currently on, I'm okay with that. This year has taught me submission and brokenness and humility and trust and a willingness to obey and follow. His way is always best.

Thanks for all your encouragement, and sorry for all my grouchiness lately.

Hannah ;)