Pages

Sunday, October 30, 2011

Weekend-O-Fun

This weekend, I had the extreme pleasure of hanging out with some very special people... Nadia and Dennis of the UC Vlog! It was a weekend full of fun, complete with pumpkin carving (click to see their INCREDIBLE IBD awareness building pumpkins!), BBQ eating, and rodeo watching! I got my first taste of delicious Pakistani food, and Nadia and Dennis explored Dallas and celebrated Dennis' birthday! Between all the fun, Nadia and Dennis were hard at work filming video after video for their site! I even got to make a guest appearance in 2 videos.

It was pretty to be with two other people who have walked the same path of disease, tests, treatments, hospital stays and surgeries due to Inflammatory Bowel Disease. All of us share a common desire to use our experiences to help others who are fighting Crohn's, Ulcerative Colitis, and other digestive diseases. And, as you can see from their pumpkins... although missing a lot of guts, their senses of humor are still firmly intact!

Hannah ;)

Friday, October 28, 2011

Scary Costume


I had an internal struggle this week. It's not really new. See, I have a lot of days where I feel completely wiped out. I get out of bed to go fill my very cool water bottle (seriously, everyone needs one of these! They are AMAZING!) or something, then I'm completely exhausted and shaky and have to go lay down for another hour. I just don't want to do anything. Even the thought of taking a shower is too overwhelming. Then I start beating myself up - telling myself that I just need to try harder to get out of bed and do things and get a job and be productive! Then, I'll have a day where I actually have energy - and on those days I always get out and do a million things. On those days, I have no desire to lay around. So then I think, Oh, I am not just being a lazy bum on those days when I'm laying around. I really do just have bad days where I feel awful and can't do stuff. When I feel good, I feel like doing things. When I don't feel good, I don't.

My joints are continuing to flare. I also have this issue where my eyes get really dry and red when my joints flare up, so I have to wear my glasses - which are from circa 2002 and probably illegal to wear while driving - or I have to POUR eye drops into my eyes! Thankfully, my bad couple of days were followed by a great day yesterday and today. I still have more joint pain and stiffness and swelling than usual, but I actually had ENERGY!

All in all, Wednesday was not a good day for my faith in the intelligence of the human species. I went to a Fall Festival on Wednesday dressed in scrubs, because it was the scariest costume imaginable, based on my experiences that day... keep reading! ;)


Wound care this week was same song, 5th verse. The wound is still the same size. There was no need to cauterize the wound this week, thankfully. We are trying a new combination of ointments and dressings this week - this is the 6th combination we've tried since the middle of September. I asked the doctor if I really have to come in every week since the wound is not really changing. He said I do unless the wound plateaus - if it doesn't change for several weeks. I dunno, maybe I'm missing something... but my wound hasn't changed in 6 weeks... doesn't that sound like a plateau to you?

I was scheduled to see Dr. Saturday after Wound Care, but since he had wanted to see me when the wound was better, I ended up rescheduling since it hasn't changed since I saw him a month ago. Trying to do this, however, turned out to be an extreme challenge, thanks to Misinformation, his Medical Assistant. I called and left a message a day and a half before my appointment to see if Dr. Saturday actually wanted to see me. She did not return my call, so I called again the morning of my appointment. I didn't receive a call back after a few hours, so I called a third time. Understand that each time you call, first you get the automated menu, then, after punching a few keys, you can get a front desk worker, then you can be transferred to the nurse's line, which inevitably is busy. So, on the the third call, I told the lady that I needed to speak to Misinformation directly, as I had called twice before, received no response, and needed an answer before my appointment in half an hour.

Thankfully, she transferred me directly to Misinformation, who asked if I had got her message. No, she hadn't called me. "Oh. Isn't your number this?" No. It's not. She has my correct number because it's in my chart, and she's called me before, AND I left my number in my message both times that I called.
"Oh. Well, that would explain why you didn't get my message."

(Can you imagine poor John Smith or whoever she called checking their voicemail? "Hi, this is Dr. Saturday's office, calling to check up on your anal wound." Hahahaha!)

Misinformation continued, "Did you need something?" Yes, as I explained in both messages I left, I just need to know if I should keep my appointment or reschedule, because there has been no change in the size of my wound.
"Oh, sounds like we need make you an appointment to come in! Let's make an appointment." No, I already HAVE an appointment. Can you please just ask Dr. Saturday if he wants to see me or not, because there has been no change?
"Ok, let me put you on hold for a moment while I ask him."

Then she transferred me to her voicemail.

I waited a few minutes, called again, got through the automated menu to the front desk, and told them the situation for the fourth time. She transferred me to Misinformation.
"Hi Hannah," she said, "we lost you."
Hi, Misinformation. You transferred me to your voicemail.
"Oh. Well, he says he wants to see you in a month. So let me reschedule you. How's three weeks from now?" Well, if he wants to see me in a month, that would be about 4 weeks.
"Oh, well, he said a couple weeks. So like the beginning of November? Is that okay with you?" Um, when did Dr. Saturday say to come? A month, three weeks, or a week?
"Um, you know, a few weeks. I have you down for Nov. 16. Is that okay?" Yeah, it's fine. She hangs up.

Then, when checking out of Wound Care, the nurse had to ask me how to spell "assessment," because she couldn't figure it out and needed to pull up an assessment appointment for me.

See why I thought scrubs were a scary costume? ;)

Hannah ;)

Thursday, October 20, 2011

God's Goodness

Okay, so I haven't updated in a while... a lot has happened. I had a wound care last Friday, and the wound got a little bit bigger. Again. I was running a fever and feeling awful. The wound cultures came back negative. Despite that, the doctor suggested that I try a course of antibiotics to see if it made me feel better. At the end of the visit, a nurse suggested that I get a fresh set of eyes to look at the wound. We have not made any progress in a month.

I went to the regular doctor on Monday, and she ordered some labs and an MRI because my tummy had been hurting again right where the abscesses had been, and I was running a fever. She agreed with me to hold off on taking the antibiotics. If there wasn't any infection, they wouldn't do much except upset my stomach!

On Tuesday, I went to see the other wound care doctor. A nurse I hadn't seen before came in, and I had to remind her to wash her hands before touching my wound. She graciously complied... but I really don't think I should have had to ask!! Come on, people! The doctor thinks that the wound has too much granulation tissue, which makes it hard for the skin to cover the wound. So he burned off the excess tissue with silver nitrate. Without numbing me first. ;( Ugh. He thinks that it will need to be cauterized every week for several weeks before we see progress. Rest assured that I will ask him to numb me next time! ;) He had several ideas he wants to try before sending me back to GI to consider a UC treatment like Remicade or Humira. I also really need to be better about following my high-protein diet... I have kind of fallen off the bandwagon (and some pounds are falling off me, too, as a result). This will help my wound to heal. I also have to stand up and walk around for 30 sec after each 30 min of sitting.

Next, I went to go get my MRI (after almost passing out when I heard what it's going to cost me! My old insurance was so amazing that my new insurance seems incredibly crummy in comparison). On the way to the MRI, I got some excellent news! Many of you know that I was originally in nursing school when I got sick. During some time off school, God led me out of nursing. I have been pursuing pre-reqs for med school/Physician Assistant school since then. After months of studying for the MCAT, God tightly closed several doors at once that made medical school out of the question (although I still took the MCAT and could use my scores for up to 5 years). So, this summer, in between surgery and wound care, I finished up the remaining PA pre-reqs and applied to several PA programs. This past weekend, I was invited to interview at two schools, and, while I was driving to my MRI, received a call from one of the program directors. They offered me a spot in their program, to begin in May! AAAAAH!! When I could breathe again, I thanked the director for his call and expressed my excitement! ;) I never expected to hear back so quickly!

The doctor called me today, and thankfully, the MRI did not show ANY infection at all!! Praise God! It did show a very large ovarian cyst exactly where I was hurting, so that definitely explains the pain. I've had these cysts before, and they come and go, and I'd really rather just leave them alone! The doctor believes that my fevers (which I've been getting daily) are from my arthritis inflammation, not infection. Not too much we can do about that...

I've been off and on feeling completely awful and totally fine. It's very strange, but I'll take it! Last night, my joints completely froze up and I couldn't move! My mom had to bring my contact lens stuff downstairs to me so I could take them out without having to move. I wasn't able to sleep well from the pain, and today's been rough so far, too... hopefully it's just the weather.

The other good thing about the MRI being clear is that we can move forward with more aggressive treatment for the arthritis, if needed (I go back and forth on this, because I have times when my joints are okay, then I have times like today where I'm totally miserable and can hardly support my weight. And constant fevers are just no fun at all).

Mainly, though, I'm rejoicing in God's goodness for a clear MRI, a "next step" in my life, and for my heating pad and fleece blanket that never fail to make me feel a little bit better!

Hannah ;)

Friday, October 14, 2011

An Open Letter to Squirt

Dear Squirt,

I never thought I'd be writing this letter to you. And I never thought I'd say any of the things that I'm about to say. But in honor of your second birthday (TODAY!), here goes:

At the risk of sounding dramatic, you have given me my life back. My life used to revolve around going to the bathroom. There was the constant stomach pain from the moment I woke up until I went to sleep curled in a ball around my heating pad. It never really went away, just got worse.

There were the months when I'd have to get up hours before I had to be anywhere so that I could spend most of that time in the bathroom, having bloody bowel movement after bloody bowel movement, over and over again. There were the nights spent on the bathroom floor so I'd be close enough. There were semesters of sitting near the door of the classroom and special permission from professors so I could run to the bathroom whenever I needed to. There were the accidents. There were days when I couldn't leave the house at all because I was, as one of my doctors so gracefully put it, "a potty cover." ;)

There were the constant IVs to rehydrate me since my colon didn't absorb any water. There were the anti-spasm pills that made my vision blurry and my mouth cotton dry. The liquid diets. The gluten-free diets. The low-fiber diets. The supplements and herbs and pills and treatments and medicated enemas and medications and infusions. It didn't really matter; I still hurt and was sick more often than not.

Squirt, there's no way I could have held down a job back when I had a colon. Few jobs can accommodate sudden needs to go to the bathroom every several minutes. You have given me freedom and independence in a weird sort of way. I can choose when I go to the bathroom. And there's no pain, no urgency. I go in, empty my bag, and I'm done.

Are you an inconvenience? Maybe. But honestly, Squirt, you're not nearly as inconvenient as having an ulcerated, nerve-damaged colon that never worked properly. Are you gross? Maybe, but not as gross as ulcerative colitis. Do I still have a long list of health problems that make me slightly miserable? Yes, but I have one problem fewer...

When my doctor first told me that he was going to make you, I thought, "Thank goodness this is only temporary. There's no way I would live with an ostomy forever." God has made me eat those words -- and I say that without any bitterness, just with a smile, for I am truly thankful for you, my permanent sidekick, Squirt.

Many happy returns.

Hannah ;)

Tuesday, October 11, 2011

Prayers for Laura

Laura, from It's So Long Colon wished Winnie the Pooh, her ileostomy, a lovely goodbye on Sunday as she headed in for surgery to create her J pouch. I'm praying for a speedy recovery and a quick adjustment to life with a J pouch! Go visit her blog and wish her well!

I'm doing okay! Feeling kind of "off." Nothing really is wrong; just bad days here and there. A bad day with the steroids last week, arthritis flaring with the weather, migraines, tummy hurting and feeling nauseated. I am a little concerned that something is not right with my tummy. I don't really know what the deal is. It just doesn't seem like I should have to force myself to eat and still have pain. Hopefully it's just that my body is still trying to clean up the inflammation from my June surgery!

Hannah ;)

Friday, October 7, 2011

Happy Birthday, Semi Colon!

Two years ago today, I published the very first post on Semi Colon from a hospital room decorated with mismatched 1980's blue and green floral curtains. I was about to undergo my first surgery, a colectomy & J pouch creation (laparoscopic total proctocolectomy with ileoanal anastomosis and diverting loop ileostomy) and didn't want to have to answer a million phone calls, emails, and texts asking for updates. ;)

Semi Colon has become a place where I narrate my health adventures with (usually) good humor and reflect on how these adventures affect me spiritually, or more importantly, what they show me about God. Blogging has been a great way for me to put my thoughts in order and re-focus on Jesus.

I am so thankful for you, my readers, who have been nothing but kind, caring, funny, respectful, supportive, and many other wonderful adjectives. You have encouraged me when I've been discouraged. I hope that, in some small way, following my journey has drawn you closer to God and encouraged you to faithfully live out your life, to walk each day, in a way that honors God. Because that is way more important than being "healthy."

Why is this so important? How can I (and you!) have hope and peace with God when I'm stuck in a body doesn't work right or in situations that are incredibly tough?

One day, each one of us will leave our bodies behind (I will just have 7.5 feet less of guts to leave behind than most of you). One day, you will die. Tough topic for a birthday blog, but true. And you will face God, the God who made you. The God whose standards you can never perfectly keep. The God who gave you a conscience you can't even live up to. And when you face Him, it won't matter what your health was like, what kind of diet you ate, what kind of good things you did or didn't do. Someone has to pay for those things you did wrong. And our attempts to make things right with God just fall so short (Romans 3:23, Isaiah 64:6). We deserve punishment because of that.

But God - (beautiful words!) demonstrates His own love toward us, in that while we were still sinners, Christ died for us (Romans 5:8, part of the Romans 5:1-11 challenge!). He took the punishment our sins deserve (II Cor 5:21). If we come to God in repentance and faith, we are justified - made righteous in God's eyes - because of Jesus' death in our place. This gives us peace with God, and a hope for the future, a hope that does not disappoint us (Romans 5:1-5).

Dear readers, as a follower of Christ, I beg you on His behalf, be reconciled to God (II Cor 5:20)! Please do not wait. If you don't have this hope, if you know that you lack a peace with God, ask for His forgiveness. Turn to Him in faith and He will be your Lord, your King. If you have a question, send me a comment or message (I preview them, so if you prefer yours to NOT be published, just let me know).

Please, right now, spend 5 minutes thinking about this... and if you already are following Christ, spend 5 minutes reminding yourself WHY. What is important in life, and what is not? Knowing Jesus is the most important thing (Philippians 3:7-14).

In the next year, look for some changes coming to Semi Colon. Blogging has opened up the doors for me to meet other people who have UC and people going through surgeries. This has been such a blessing. I'm working on organizing and more clearly presenting "my story," but mainly, I will start publishing posts on tips and tricks for hospital stays, surgeries, procedures, and living with an ileostomy. I hope to make Semi Colon a resource for people who are on the ever-exciting journey of living life with IBD.

The tag line for Semi Colon is "my journey to a life without ulcerative colitis." As I learned today, that journey still continues...

Happy Birthday, Semi Colon.

Hannah ;)

(see post below for today's update)

It's Baaaack!

Today I had more wound care... sorry, I feel like I sound like a broken record these days! ;) Unfortunately, the hospital LOST the cultures we did last week. You will recall that these take several days to grow, so this is, um, disappointing. Also unfortunately, the wound is not any smaller. It really is the same size as it was in mid-September when I got rid of Edgar. Thankfully, it's not oozing pus anymore and is a little less painful than a few weeks ago.

And ALSO unfortunately... the doctor thinks that the wound not healing is a manifestation of Ulcerative Colitis. Again. I have no colon, no rectum, no J pouch, no abscesses, and no anus, but somehow, my UC has found yet another way to rear its ugly head. Haha! At this point, it's just humorous (and slightly impressive) how it manages to come back! It's pretty stubborn, but thankfully... I'm even more stubborn.

The doctor said that IBD (Inflammatory Bowel Disease, a group of diseases encompassing Crohn's and UC) is not just a disease of the digestive system - it is a disease of the immune system, so the inflammation can come back in numerous places, even after the inflamed intestines are long-gone. We already know that I do have systemic issues - my arthritis, for example.

We repeated the wound cultures because he wants to completely rule out infection. In the meantime, I'm supposed to try to limit my sitting. Hmm... I'll letcha know how that goes! ;) The worst case scenario for this, the UC coming back in/on my wound, is that I would have to actually go back on Remicade/Humira - both heavy-duty treatments I'd prefer to not revisit.

Hannah ;)

Sunday, October 2, 2011

Wound FAQ and Rise & Conquer!

So, Friday's wound care was a "same song, 2nd verse" deal. My wound is not getting smaller. It is looking a little healthier than it did on Monday, which is good. The doctor did some wound cultures to see if the wound is infected, and if so, which antibiotic would be effective.

The dark side of all of this is... 1. the wound may have a drug-resistant infection, since I've been on so many antibiotics, and 2. the wound may not be infected at all- it may be my UC coming back on my skin. Just like the ulcers from my UC moved to my J pouch, they could also set up shop in the anal area. So, sad as it sounds, we're actually HOPING it's "just" an infection! Thinking that it's UC back again is just a little too scary to dwell on!

As far as the wound goes, I'd like to address two FAQs:

Q1. The WoundVAC was working; why can't you use it again to close up the wound?

A: The WoundVAC is very effective for helping a deep wound fill in. Imagine my wound as a hole in the ground. Edgar the WoundVAC helped fill the hole in. He did his job well, and his work is done. The hole is now filled; we are just waiting for the "grass" (skin) to grow over the "dirt" (granulation tissue).

Q2: Why can't they just stitch up the wound?

A: Imagine if you took a potato peeler to your arm (emphasis on "imagine:" don't try this at home, kiddos!). You couldn't stitch that wound together, could you? My wound is similar.

Finally, I'd like to do a big shout-out to Rise and Conquer! The 3rd Annual Morse Cup Tournament, a golf tourney, was held on Saturday. This year's honorees were two kids, Philip and Sophie, who live with Crohn's/UC. These kids and their families have been through quite a bit as a result of these "crappy" diseases. I don't know the final count-up, but a LOT of money was raised that will help these families and support those fighting Crohn's Disease and Ulcerative Colitis! The most amazing thing to me was the number of volunteers who were there. It meant a lot to me, as someone who's gone through this disease, to see people wanting to lend a hand to help out others who are suffering! It really touched me, and I'm about as sentimental as your average teenage boy. Hopefully we will find a CURE for Sophie and Philip! And while we're waiting, we can give their families support so they can continue seeking the best treatment possible for their amazing kids.

Hannah ;)