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Thursday, January 27, 2011

GI Doctor Saves The Day

So, GI doctor was as good as his word, and met with me today after my ultrasounds. He took my scans to two different head radiologists and had them comment on the CTs.

The good news is... I do NOT have part of Twitchy left inside of me!!! This is EXCELLENT news.

The bad news is... they are pretty sure I have a fistula - something connecting stuff that's not supposed to be connected. This is probably the cause of my passing blood, although we are still not exactly sure what the source of the blood is. There is also a slight chance that I have a tiny bit of pouch or mucosa that has UC or pouchitis, and this could be causing the blood.

So, GI doctor looked me in the eye and said, "I think that all us doctors have been passing you around and not actually taking responsibility to address your problems. I will be that doctor. I will be responsible for figuring out and managing this problem. Is that okay?"

Is that okay? GI doctor, where have you BEEN for the last three months as I've been trying to get answers? I am relieved that finally someone is willing to actually approach and try to fix my "issues." I am just slightly irritated that it has taken this long for one of my doctors to take the reigns.

So, I get to have a very very cool cutting edge test done... an MRI of the intestines! There are only two other machines with this capability in North America - one's at Mayo, the other's in Vancouver or something, I believe. Usually, when you get an MRI, you have to lay there for an hour. It's very slow. But it shows great detail of muscles and tissues. Unfortunately, it's totally worthless for your intestines, because you can't get them to sit still for an hour! ;) So all that shows up on a standard MRI is a blur where your guts are. Enter this new cool MRI machine... (drumroll, please)... it somehow (I don't understand how exactly) can capture images of your intestines. This is very useful in patients like me. And there's not radiation like from a CT scan. So it's a very cool thing, and hopefully this test will define what exactly is going on in my lower abdomen. Because if not, they are going to try to scope me where no scope has ever gone before. Don't worry; I'll request anesthesia for that one. ;)

Also... I am getting referred to a dietician. GI doctor was like the dozen-eth person to tell me I look too thin. Hopefully she will have some good ideas! It would be great to figure out what I can and should be eating and how much I need to get to my "healthy" weight again.

Finally, the day concluded with a call from ID PA. My ultrasounds were clear again! I figured so, cause I've been feeling better. So I am now officially OFF antibiotics!! Hurrah! I am so not a fan of antibiotics. Feels good to take 4 fewer pills per day. ;) He called to remind me that I have to follow up with him ONE MORE TIME. Then, hopefully, he will release me back into the wild.

Hannah ;)

Sunday, January 23, 2011

Thin

In just one day last week, FIVE different people at work cornered me to tell me I was too thin and look like I'm losing weight. I'm not quite sure what's up with that - I wear scrubs, so I don't even see how they can tell! ;) And I'm not dangerously underweight or anything - just smaller than my usual. But it's true... I gained weight in November and December, but I've just lost weight since the new year. I'm several pounds lighter than I was when I got discharged from the hospital back in September!

I promise I'm eating - sometimes I am very nauseated so I don't really feel like eating. Also, I just don't get hungry very often - I literally have perhaps one time a week where I actually feel hungry. But really, I'm eating, so I don't understand why this is happening... and my labs look fantastic, so I'm not deficient in vitamins or protein or anything.

I kind of think that some of the not eating thing is psychological - because it used to make me sick when I ate, I go through phases where I am a little bit nervous around food. But really, I do well at eating a lot of the time - I can go out and eat with friends, I eat with my family - I really do try! But the problem is, I have to do well three times a day, which is hard! ;) I tend to just forget to eat and I sometimes can't eat a lot at once. So I might eat a big lunch, but then I don't want to eat dinner and I just had a few bites for breakfast.

I had been doing so good with eating - I was eating totally normally and everything, which was great (except that I cannot eat seeds, nuts, or most raw fruits and veggies. They get "stuck" because of my surgeries and give me obstructions). My eating has gotten worse over the last few weeks... I think that the antibiotics are exacerbating this, but after I get off of them, my system will be all out of whack and it will take ages and tons of yogurt and probiotics to get it back on track again... so frustrating. I used to love food and love cooking and eating, and honestly, I kind of dread eating and being around food most of the time now. Sigh. One day, I will be a cookie monster and foodie and chocoholic again! Until then, I may have to go back to my dear friends Boost and Ensure. ;)

Hannah ;)

Saturday, January 22, 2011

Innnnnnteresting

Well, I've continued the antibiotics and I guess they are working... I think I'm feeling a little bit better than I was earlier this week. I'll get ultrasounded on Thursday, just to be sure things are heading in the right direction. I'm having less abdominal pain, but still having the bleeding issue.

Overall, it's been a good week - my pain is kind of back to "normal" - I still hurt, but it's not out of control most of the time. I did have one sleepless night from pain, but I was still able to make it to work the next day and be okay! I'm so thankful that God is allowing me to make it through the days without crashing. It's so amazing!! I can't get used to it!

On an innnnnteresting note... I spoke with GI Doctor last night. Yes, on a Friday night, after work. From his cell phone. This call may have helped restore my faith in doctors. I sent him a somewhat pointed email earlier this week and made it very clear that I needed an answer... lately I have not been getting responses to my emails. I was very thankful that he called! He said, repeatedly, with no prompting from me, that "it is not normal, Miss Hale, that you are bleeding from your... (not quite sure what to call it - rectum?). It is not normal. This should not be happening."

This may sound silly, but it is INCREDIBLY reassuring to be told that no, this is not normal. All the people form surgery have told me repeatedly that it's fine, normal, expected. So I feel like I'm a little crazy for thinking it's, um, abnormal to be bleeding from an orifice I am not supposed to have anymore.

I also let him know how concerned I am about the possibility that I have some J pouch or something left inside. He shares my concern and is having a hard time determining what exactly is left. He can see something on my scans and ultrasounds, but it's tough to know what it is. It could be nothing, it could be part of Twitchy, it could be one of the abscesses... So, he is going to meet with the head of the radiology department and go over my scans with him to try and figure this out. Then, we will meet on Thursday to discuss what to do.

I am not quite sure how I feel about all this... but I am very thankful that finally someone shares my concern and is willing to take charge and get to the (haha) bottom of things. ;) Overall, I am just so thankful that I am doing better. This spring and summer, I was just in agony all the time, needing IV fluids every few days, in bed a majority of the day... I am so thankful for this newfound stability. It's amazing to not have to worry that I won't be able to get out of bed tomorrow. I know that all of this rests in God's hands. I'm not trying to complain about how bad things were. Nor am I trying to minimize the current issues, some quite serious, that I will have to deal with for years to come. I am just thankful each day for whatever God allows me to do and however good He allows me to feel. And I hope I use my time to honor Him.

Hannah ;)

Tuesday, January 18, 2011

Good News/Bad News...

So... report is back on the ultrasound - it was all clear! All better! Yay! Also, my white count was NORMAL! This is so exciting! The PA called me to tell me this news.

He said that I could even stop the antibiotics! But... unfortunately, I've been having more lower abdominal pain since Saturday afternoon. Not sure why... but it feels just like the abscess pain again. It hurts to wear a seatbelt or go over bumps or sit down... arrrg. So, after I mentioned this, the PA decided that I should continue the antibiotics until we figure out what's going on. ;(

I was supposed to get an ultrasound again today, but it looks like that's not actually going to happen. I'm continuing to have off and on nausea, too, but I think that's more related to antibiotics than anything else. I was feeling kind of awful this morning with lots of pain and shakiness, but decided to take a tiny bit extra steroid. I perked right back up within 45 minutes. I feel a bit guilty doing this, but it really helps... silly body... not sure why it's doing this to me...

I don't really think that the abscesses could have formed again between Friday when I got ultrasounded (is that a word?) and Saturday when I started hurting... but the doctor and I don't know what else this could be from. I thought I was gonna be all better from the abscesses, so this is a little frustrating for me and the doctor...

Hannah ;)

Saturday, January 15, 2011

GOOD NEWS!

So... I have good news (I think)!

Friday I went to the ID Dr - I saw his PA. I really liked him - he listened to my whole story and all my concerns. Overall, though, I had good things to say - fevers gone, pain improving, energy better. The concerning thing still is the bleeding issue. He talked to ID doctor about this and there are several theories floating around about this. They think it's either a fistula... or that I have endometriosis. I don't want either of these things. But both those theories kind of explain the low abdominal pain and stuff. Anyways, they are just tossing ideas around at this point.

ID PA got me repeat sonograms that afternoon - I had to wait around for a couple hours, but I had the afternoon off anyways. It was so nice to get it all done in one day instead of having to drive over there yet another time.

The ultrasound tech couldn't really say anything final... but... she did say that she thought that the fluid collections were much, much smaller than they were on my test just two weeks ago!! This would be EXCELLENT news!! Maybe the abscesses are finally going away after 4 months! Of course, nothing is for certain until they really compare the studies and write the reports, but I'm going with what the lady told me and believing that the Ab Four are on their way out!

I also got labs drawn. Hopefully my white count will be down, too...

Please pray for one of the clinic nurses, Angelita. She is my buddy. ;) We were talking... turns out her husband, Earnest, just got diagnosed with cancer over Christmas and is going through chemotherapy. I got to share the hope that's found in Christ with her and I'll be praying for her and her husband. I gave her some verses (including Romans 5!) to read. Please keep them in your prayers!

Hannah ;)

Thursday, January 13, 2011

Thankful

Click back to January 1 to see the year in review post...

Healthwise, this week has been pretty good, if we don't count Saturday night through Monday night! I had bad intermittent tummy issues. I am pretty sure that I am having obstructions, which is sad, but thankfully, they eventually passed and I'm okay. This is somewhat amazing that I did not require IV fluids to keep me stable! I was down for the count, but God allowed my body to be okay on its own and nothing got out of control! My energy has been pretty fantastic this week - I'm tired, but just normal person tired, not shaky and dizzy and run over feeling. This is wonderful! And may or may not be due to me messing with my steroids... I have taken a little tiny bit extra on some days, and it really helps me to feel better. Endo doc would sigh and shake her head, but I know my body... and some days I just need more steroids!

In other happy news, my pain has finally gone back to "normal" after a rather horrid month or so. I'm doing well when I take my normal meds, and I'm not needing extra meds! I am so thankful! I feel like a totally different person, since this week I've had both energy AND not been shaking and hurting uncontrollably! Also, I must admit that the antibiotic cocktail has caused pretty tremendous improvement in the abdominal pain and bladder issues! My low grade fever has also disappeared for the past week. Overall, I think that my body has less inflammation, which is a very good thing. Hopefully this will start to be reflected in my lab values, too.

In depressing news... I'm having that whole bleeding from my backside issue again... I remain totally baffled as to why this is happening and what this means. My doctors are being very evasive about this issue, which is not so helpful. This could be a fistula. This could be from the abscesses. This could be ulcerative colitis or pouchitis coming back in a place I was SUPPOSED to have removed back in August. No one knows. No one is saying. No one is wanting to investigate this... And honestly, part of me doesn't want to know, either! I don't want to hear more bad news! ;) But obviously, we need to get this defined and figured out. And the sooner, the better.

I finally got one of my doctors to talk to the other doctor about the cyst thing on my ultrasound. She confirmed that it is nothing to be concerned about and that no further testing is necessary. I knew this... but now all my doctors do, too! I'm thankful that we got that straightened out without more doctor visits. ;)

I would ask for prayers about wisdom for dealing with doctors... seems like I have to communicate with at least one doctor each day! Despite this, I'm not really getting answers to some of my concerns. And it's a constant struggle to try to get all the doctors on the same page. Please pray that I will be a light for Christ in the midst of this. Also, please pray that the doctors would be diligent, and that we would know the best course of action. It seems impossible to simplify my situation or to find solutions, but I know that God is much bigger than all of this and that my health problems are not the center of the universe, haha. Obviously, He has much larger plans at work!

I'm really thankful that God granted me some better days this week and I pray that they will continue! It feels good to have the energy to help around the house and be sociable. ;) It's the little things that I can't take for granted anymore... and neither should you! What have you thanked God for today?

Hannah ;)

Monday, January 10, 2011

One Day, Two Doctors

Aah, well, it was about time for more medical drama! ;) I had two doctor's appointments today. First off was Endocrinology. I was worried she'd be irritated with me for not going down more on steroids (I haven't successfully tapered at all since, um, August). Thankfully, she was really understanding and just thinks my body still needs more time to settle down from healing from surgery and dealing with whatever (who knows) is happening with my abdomen.

She emphasized that instead of focusing on how much longer it will take to get off steroids (or if it's even possible to get off steroids), we should celebrate successes. I'm functional again. I'm not having to go get IV fluids every few days. I'm not feeling like I'm in adrenal crisis all the time. I made it through surgery and tapered back down off the post surgery high dose steroids successfully. And we've achieved a reasonable dosing plan for the steroids to make this work. I very clearly am not getting too much steroids - my face looks normal and I'm not gaining weight - so we know I'm on (usually) enough but not too much. We made plans for how to taper should I feel ready to try again. And I don't have to come back for SIX MONTHS!!!!

Yesterday I had either a blockage or a touch of the flu... and didn't keep my steroids down. Thankfully, God protected me, I took them again, and they stayed down, so the story has a happy ending. But it very well could have ended with me in the emergency room with dehydration and steroid problems. So we discussed that I could get a steroid shot to keep around the house in case that happens again.

I talked to ID Dr's nurse. I may be changing ID doctors so that I can be with one who has a more regular schedule. My ID doctor sees patients only during certain phases of the moon, and it's very challenging to coordinate our schedules. So I was supposed to see him this week, and we've been unsuccessfully trying to set up the appointment since the last time I was in two weeks ago. The coordination thing is clearly not working out, so I told his nurse I'd be happy to follow up with anyone in the office; I'm not particularly attached to "my" ID doctor. Hopefully I get in to see someone this week so we can decide if I need to be on antibiotics or not! I must admit, I was feeling quite sore in the area of the abscesses, but since starting antibiotics, this is much improved. Hopefully they are doing/have done the trick!

Next I went over to the internist. I have been highly disappointed with internal medicine people. They have not been helpful to me, so my expectations are pretty low. But yeah, I was still disappointed. This is my second try at finding an internist - this is the "new" one I got this fall. Unfortunately, she isn't helpful, either. We keep hoping to find someone to coordinate all my doctors, but she is pretty unwilling to play that role. She just went over my meds, asked me if I was depressed, listened to my heart, etc. At the end, she said, "Is there anything else I can help you with?" I didn't know what to say, since she had replied either "I don't know" or "You need to ask Dr. X about that" to all my questions... Oh, then she offered my the pneumonia shot. It's kind of a running joke with my mom and me how the internists are always pushing this shot on me! I decided that I will not be following up with her as I'm unsure as to why I'm supposed to see her in the first place! ;)

I think it's so easy for me to get caught up in all the mess of doctors and pills and feeling bad that I forget to step back and look at the big picture... Endo Doc was right. I have come so very far since I started seeing her in April. I have come so far since my surgery in August. And of course, not just physically, but spiritually... I wrote an end of the year post about this, but forgot to publish it (whoops! It's coming soon, but you'll have to look back at January 1 for it). So, as frustrating as my whole health adventure continues to be, I'm thankful for the reminder of how much better things are now than they were! And sort of convicted to quit whining! ;)

Hannah ;)

Saturday, January 8, 2011

Update

Sorry for no posts for a while. Sometimes, I just need to step back and be a normal person for a little while... so I did. ;) I went to Florida to visit my very very dear friends, Stephen and Kendra. It was absolutely wonderful and fantastic and magnificent. We watched fireworks on the beach on New Year's Eve. Standing there with two people who have been with me every step of the way on my "journey" watching fireworks explode over the ocean made up for every fireworks show I've missed over the past few years... It was a lovely weekend to hang out with them and I already miss them tons!

Healthwise, things are okay. We are all still reeling from the whole "Hannah still has some of her colon/J pouch left" news and trying to figure out what this means. I am also trying to figure out what's actually going on with my tummy. The day after ID Dr. put me back on antibiotics for the fluid collections, I get a call from GI Dr's PA telling me that my ultrasound was totally normal. So no worries about anything, oh except for this big mass that they think might be cancer. I was mildly baffled (but no worries about the mass thingy. It's just a cyst. It's been on about every other scan I've ever had and it's been worked up and it's nothing to be worried about.). I just don't understand how ID Dr thinks the ultrasound is abnormal and GI Dr thinks it's fine. I have put in calls and emails (beginning on Monday) to both of them requesting that they communicate with each other about their respective findings so that I'm getting a unified answer. I have yet to hear back from them. Needless to say, I am beyond frustrated and exasperated with the poor communication and conflicting information I'm getting.

I'm feeling okay. My joints flared up this week with the weather changes, but I think my pain is better overall (plus, I saw Dr. Pain and got a shot of Toradol, hurrah). I think I need more steroids in my life, since I've been shaky and tired all week. But, I think the antibiotics are helping me to feel better overall.

I'm also having a bit of trouble with work... I am in love with my job, but I'm driving far and not getting benefits. I know that I go to the doctor a ridiculous number of times and that I am very blessed that I only work an average of 4 days a week. Their patience, however, is understandably wearing thin as I continually have to go to the doctor. I don't miss work for this; I do it on my days off. But sometimes they call me into work on my days off... and I'm always at the doctor and can't come in, so they give me a hard time about that. There is no official policy about needing to be available on days off, so I don't really know who's right or wrong in this situation. Anyways, I'm praying that I'll have a good testimony and that God will make it clear what I should do. Ideally, a perfect new job with health benefits will just drop into my lap... ;) Haha...

Hannah ;)

Saturday, January 1, 2011

2010 By The Numbers

11 Hospital stays
6 ER only visits (when I wasn't admitted to the hospital)
5 Hospital admissions
46 Days in the hospital
14 Humira shots self-administered
1 Surgery (believe, me, one was enough for this year!)
2 PICC lines
3 Weeks on TPN
14 Days without food after surgery (and only a few sips of water)
365 Days on steroids
4 Blood Transfusions
11 Current daily medications
7 Doctors currently involved in my care
87 Grade on my cumulative physics final
3.5 Hours that my graduation ceremony lasted
3 Months since I started my new job
35 Approximate bottles of V8 juice drunk
72 Number of saline flushes used on Mr. Clean (2 each day for 36 days)
0 Days I have missed my colon
11 Verses of Romans 5 memorized

Innumerable bags of IV fluids, sleepless nights, impossible decisions, doctor's appointments, pill bottles, days I barely got out of bed... then there's the countless flowers, cards, teddy bears, socks, and prayers received from loving family and friends and wonderful people I don't even know.

Last year, I anticipated that I'd graduate. That I'd have my second surgery and have a J pouch, not an ostomy. That I'd take Organic Chemistry II. That I'd get a job. As you can see, God allowed some of these things to happen as I thought they might. Others, though, God has not allowed to come to fruition. He's changed my paths. But last year, even as I wrote about things I hoped might happen in 2010, I said, "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... His way is always best." And this has certainly been true, again and again.

This year has seen tremendous difficulty and hardship beyond what I could possibly have imagined. But it's also brought incredible growth. God has so clearly revealed that it's NOT about me; it's all about Him. That I am not a great spiritual giant capable of facing whatever trial comes my way. That I do not possess such strength and faith that I can stand unmoved as wave after wave passes over me.

Instead, I've learned that I am weak. I've seen myself fall, over and over again. I've seen that I am broken and poor. And in the midst of my faltering, that's when I've seen His strength. As many times as I fail, He grants me His faith. I've seen that when I fall, He may not necessarily pick me back up again. He may make me stay in the hard places, but He remains there with me. I've seen that anything good that's come of this has been from Him, because it's obviously not from me. Let me be broken, that He may be shown strong. Let me be weak so that others see Him. As Paul says it in I Corinthians 1:27-2:5, "And God has chosen the weak things of the world to shame the things which are strong... that no man should boast before God. But by His doing, you are in Christ Jesus... that, just as it is written, "Let him who boasts, boast in the Lord... that your faith should not rest on the wisdom of men, but on the power of God." It's His power that I've seen this year and continue to lean on. I'm done making predictions on what this year will bring; it's enough for me to just cling to His power and boast in Him.

Hannah ;)