Monday, November 28, 2011

Honey Buns

So, exactly 5 months ago today, I had my 4th surgery. Dr. Saturday removed the bit of remaining J pouch and (I hate this word...) anus, and cleaned out my pelvis, which had abscesses in it, leaving me with a 10 cm long, 8 cm deep hole. By the middle of September, after 80 days on a Wound VAC, the hole had filled in, but the skin did not grow in. Then we began experimenting with different dressings. Well, after 9 different combinations of dressings and several treatments with silver nitrate sticks, the dressing I'm using now is a dressing impregnated (that's the wording on the label, I promise) with Manuka honey.

So I'm calling myself Honey Buns.

The wound is starting to heal, finally. The skin surrounding the wound had a terrible reaction to soemthing (who knows what.... basically my skin there is allergic to/irritated by... everything). For several inches around the wound, the skin was raised and red and blistered and peeling and generally nasty. It felt about as good as it looked. Thankfully, it's healing now, which is a huge relief! I so empathize with crying babies. I now truly understand that their tears are from diaper rash.

Overall, I am doing great!! My energy is getting better and better. My joints are so much less stiff and painful. I am tapering off some of my medications since I'm having less pain and issues. I still don't have anywhere near normal energy or anything, but it's so much better! I am so thankful.

Hannah ;)

Thursday, November 24, 2011

Happy Thanksgiving!

I have so many things to be thankful for... family, friends, food, church, home, new beginnings, better health, fall weather... the list could go on and on!

There are some amazing verses that have rattled me a little bit and shown me a truly amazing way of giving thanks. I'd like to share them with you:

"Though the fig tree does not bud, and there are no grapes on the vines,
Though the olive crop fails, and the fields produce no food,
Though there are no sheep in the pen, and no cattle in the stalls,
Yet I will rejoice in the Lord;
I will be joyful in God my Savior.
The sovereign Lord is my strength,
And He makes my feet like the feet of a deer,
He enables me to tread on the heights."
Habakkuk 3:17-19

I know that pretty much everyone who reads this blog has gone through/is going through very hard things. Maybe physical difficulties. Maybe spiritual. Maybe heartbreak in your family. Maybe financial troubles. Sometimes everything around you is falling apart. How do we face these difficulties? Habakkuk writes about unimaginably hard times - it's not just a bad hair day. It’s crops failing and food not growing. It’s having no livestock. He is sitting there, staring starvation in the face.

His reaction, though, in the midst of an absolutely dire circumstance, is to rejoice – to rejoice in the Lord. He calls Him his Savior. He calls Him sovereign - all powerful. He calls Him his strength.

Habakkuk was counting on the fig trees to bloom, for the olives to grow, for the fields to bring forth grain, for the flocks and cattle to still be around. We count on those things, too. We count on our savings, on a regular paycheck, on a pantry full of food. These are the things that we’ve worked hard to produce to provide for ourselves and our family. We're thankful for these things, especially on Thanksgiving.

So what Habakkuk is saying is truly remarkable. He's saying that even if those things all disappear – YET he will rejoice in the Lord, because He is his Savior, sovereign, and strength.
Life is a great gift. The things we enjoy in this life are amazing, incredible gifts. But the point isn't the gift itself. The point, Habakkuk says, is the Giver, God. James 1:17 tells us that every good and perfect gift comes down from above. In the midst of tough circumstances, we trust that He will save us from calamity. He is sovereign – all-powerful and in control of these circumstances. And He is our strength – to give us strength to face situations as scary as certain starvation. He will enable us to do what seems impossible… like rejoice even in the midst of hopeless times.
So today, on Thanksgiving... I don’t know where you are or what you are facing. But we do have many blessings to be thankful for.

But even if those blessings were gone, YET I must choose, like Habakkuk, to rejoice in God my Savior.

Happy Thanksgiving... enjoy the gifts... thank the Giver.

Hannah ;)

Tuesday, November 22, 2011

An Open Letter To ConvaTec

Dear ConvaTec,

I am a long-time user of your moldable wafers (Natura Sur-Fit). I really love them – they hold up so well, and I rarely have issues with skin breakdown or leaking (15 months leak-free!). I wear them up to 9 days at a time and can do pretty much anything I want (including swimming and high diving and going down really tall water slides) while wearing them.

One day, I was getting materials ready to change my pouch and wafer. Imagine my surprise as I tried to roll up the lock and roll system on the pouch, only to discover that a Velcro strip was missing! The good news is that I noticed this PRIOR to trying to wear the pouch. That would have been an unforgettable experience.

[Here is a picture of the tails of two pouches. On the right is a normal pouch. You can just barely see the Velcro strip just below the flap. On the left is the defective pouch. The Velcro strip is absent.]

For your amusement, I have enclosed the (unworn) defective pouch.

While I’m on the subject, I would like for you to consider making your opaque pouches actually opaque. They are currently very transparent. Just as I’m sure you prefer to not examine your fecal matter or anus (at least, I assume this to be true), I am not a huge fan of having to look at my ostomy and my own waste any time I change clothes. I know you offer a transparent bag for those ostomates who do enjoy this. I (and many ostomates I know) would welcome a more opaque model with open arms (figuratively speaking).

I heard that you are making new bags which are less plastic and “crinkly” and more cloth-like, which I think will be a great improvement.

Please let me know your thoughts about making the pouches more opaque. I am a 24-year-old with a permanent ileostomy, so I will be utilizing ostomy supplies for (hopefully) many years to come. I truly enjoy using your products and find them to be very durable and comfortable. I would greatly appreciate a more opaque bag, such as is offered by most other ostomy supply companies.


Hannah ;)

Wednesday, November 16, 2011

Yeah, REALLY Sweet!

Today was D-Day. Today, if my wound was the same size, I would be referred to the plastic surgeon for a discussion about my options, most likely skin graft surgery.

The nurse peeled back the sticky honey dressing... and...


There are tiny little beads of new skin starting to grow in around the edges.

For the first time in two months, I've made a step in the right direction.

Praise God!!!

The doctor cauterized the wound for the millionth time, and I wandered over to Dr. Saturday's office (with a stinging tush).

Dr. Saturday agreed to take over my wound care from here on out, which will be, like, waaaaay cheaper. And I don't have to come back for TWO weeks!!

We think that the methotrexate is already making a big difference - telling my body to quit attacking me so I can heal. I'm also drinking a protein shake every day, seeing the chiropractor 3x/week, and doing some new supplements. I also noticed a substantial increase in energy last week. Dunno which thing is helping, or if it's a combination of things, or if it's all coincidental. And then the last few days have involved steroid issues, malabsorption of meds, more fatigue, and lots of pain. BUT! The wound is getting better! And I think that the rest of my body will start following suit.

So as I put a new sticky honey dressing on my wound, I began to wax eloquent in my mind. I thought, this is the bee's knees. My wound is starting to bee-hive and life is sweeter than, well, a honey impregnated wound dressing.

Hannah ;)

Friday, November 11, 2011

Shootin' Meth on a Friday Night

A couple weeks ago, I went to the Rheumatologist. She is interesting. She either wants me to go to the hospital or is convinced that I am depressed. Before you get to see the doctor, you have to fill out this loooong questionnaire about your pain levels, functional ability, energy level, etc. It is a bit of a downer to write all that stuff down! I am admittedly an unhappy camper by the end of filling that form out, so that's probably why she thinks I'm blue!

Anyways, for the past year, they have been unable to do much to treat my arthritis. I had a chronic infection in my belly, and it's not so smart to suppress the immune system when it's fighting an infection. Finally now, however, we have not one, but TWO MRIs that clearly demonstrate no infection! Praise God. I still have a mildly elevated white count and intermittent low-grade fevers. I had a really bad time with my joints last week (the weather didn't help!), too.

So we decided to start a low dose of methotrexate, a chemo drug, once a week. It's used a lot in rheumatoid arthritis and lupus. It's supposed to knock down your immune system enough that it quits attacking you -- ideally without lowering your immune system enough to really hurt you too badly. She did also offer me antidepressants and told me that the methotrexate won't help my fatigue if it's fatigue caused by depression. Lol. No comment.

It should start helping with all the autoimmune inflammation in my joints and muscles. If my wound is not healing because of autoimmune stuff, this hopefully will help that, too!

So... I load up my little syringe and shoot up some meth each Friday night. Here's my shady supplies:

It really looks like yellow snake venom, doesn't it? Yummy. ;) Whenever I'm in the hospital, my mom always brings fun bandaids for all the times I get poked. It's tradition. Rainbow tie-dye and Snoopy bandaids have been my favorites. Thankfully, I found more of the infamous Snoopy bandaids! Yes! Methotrexate can cause nausea, vomiting, mouth sores, headache, hair loss, etc. I was told to expect to feel rotten the day after the shot. Last week, I had a bit of a headache, but that was it. Hoping that this will put my body back on track.

Hannah ;)

Thursday, November 10, 2011


Here's the basic formula for wound care posts:

"The wound looks healthy. It (choose one) has not changed in size/is slightly larger. It still is not healing. We decided to try (choose one or two) a different dressing/cauterization. I made an appointment to repeat this process in a week, then drove home."

This week and the week before also followed this pattern.

The doctor told me that I've been very lucky (I say blessed) that the wound has been open since June, yet I have not had a single infection in the wound to date. The longer the wound stays open, the greater the chance that it will get infected.

He started to discuss referral to a plastic surgeon for possible skin graft surgery. Problem is, this won't actually "take" if the wound is not healing for autoimmune reasons. Another option might be a biopsy to see why there's been no healing. A biopsy would show if I have ulcerative colitis in the wound. I see Dr. Saturday next week (click here to see why am I seeing him next week), so we'll see what he says. Hopefully he and the wound care doctor can put their heads together and figure out a good plan.

We are, of course, trying yet another new dressing. This one is pretty interesting. I've had dressings made of algae, foam, cardboard-like dressings impregnated with blue dye that is supposed to kill germs, and dressings, pastes, and powders containing silver, to name a few of the NINE combinations we've tried so far.

A few weeks ago, I was standing in line at the grocery store checkout. The lady behind me had 6 jars of honey in her basket. That was it. I asked her what she was making. She told me that she worked at a vet's office, and they put honey into the animals' wounds. It kills bacteria and promotes healing better than anything else! A friend at church had also mentioned this to me.

So, the doctor brought in a new dressing... it is soaked in honey!!! No way!! I texted my mom about it. She replied, "Sweet."

After pulling the icky sticky dressing out of my wound today for a dressing change, I'm not sure I can ever view the honey pot in the same way again...

Hannah ;)

Tuesday, November 8, 2011

You Know You Spend Too Much Time Dealing With Medical Billing When...

Due to all my health issues, I am currently averaging about two doctor's appointments per week. This is actually an improvement from the 4/week I had all summer. Most of my doctors are at least 35 minutes away, one way. Add on to that the wait time and the time with the doctor, and you have a pretty significant time investment just to keep my appointments.

Because of all this, I receive innumerable EOBs (Estimates of Benefits) and charges from doctors. Recently, it's been almost humorous - in the past several weeks, not a SINGLE ONE of these has been correct. I've been billed for services on dates when I was NOT receiving services. I've been billed for services that I never received. I've been billed for office visits that were coded incorrectly and should have been free of charge because they were post-op visits. Three offices continue to bill my old insurance carrier, although I've called each office at least twice (beginning in August) to give them my new insurance information. I've been denied coverage of a new medication after 2 hours and 4 calls back and forth from the insurance carrier and the pharmacy carrier (one insists that it is covered, the other insists that it's not, but both refuse to talk to the other). I've been billed twice for labs that had to be redone because the hospital lost the first batch. I've been denied coverage for certain doctors because they are in association with a hospital, and so my insurance treats an office visit with these providers as an Emergency Room stay and refuses to cover them. And it goes on and on.

Each one of these mistakes represents an inordinate amount of time that must be spent on the phone and organizing papers. I spend at least an additional hour or two PER DAY on the phone dealing with doctor's offices, billing offices, pharmacies, and insurance companies. It's really a full time job! I am so thankful and blessed that my parents took care of the majority of this type of business when I was very sick. It was a burden I could not have borne.

So, You Know You Spend Too Much Time Dealing With Medical Billing When...
  • You find yourself humming the insurance companies "'hold" song because it's stuck in your head
  • You have your insurance ID Number and Group Number memorized.
  • You understand ICD-9 codes, 5-digit procedure codes, and you know and can explain laboratory billing procedure in the state of Texas to insurance reps.
  • You start recognizing the name and voices of the Customer Service reps for your insurance company
  • You are on a first-name basis with the billing department of two hospitals and a doctor's office
  • You use your insurance card more than your debit card
Hannah ;)

Saturday, November 5, 2011

What's in Semi Colon's Fridge?

So... I have a SERIOUS salt problem. I can't stop eating it. I salt salted chips. I love the bottom of the pretzel bag. When cravings hit, I am unable to concentrate on ANYTHING until I go to the store, buy whatever I'm craving, and dig in. I've actually left church and school to go buy pickles. Here is my salty food cravings list:
  • Claussen Dill Pickle Spears (and sometimes, when it's really bad, I even drink the juice!)
  • Green Olives
  • Salt & Vinegar Chips (I don't even like potato chips, but I LOVE the sour/salty combo, sooo, this is way gross, but sometimes I just lick the chips. Don't worry, I don't put them back in the bag once they have been licked)
  • Lemon or lime slices (with salt)
  • Chicken noodle soup - the kind from powder, it's so salty and delicious!
  • Cheetos (the crinkly ones, not the puffs - the uneven surface collects more orange-artificially-flavored-cheese-powdery-salty goodness)
So here was the scene upon opening my fridge awhile back:

Here's a close up:

There are a couple medical explanations for these insane cravings. The first, and most obvious, is that I'm missing the last 7.5 feet of my digestive system. The colon, specifically, is responsible for reabsorbing water and electrolytes. So I can get dehydrated and deficient on salt pretty easily!

Another reason is my adrenal insufficiency. The adrenal glands are responsible for maintaining your fluid and electrolyte balance. I take a pill that's kinda the opposite of a water pill - it makes you retain fluids and salts. But the more salt you eat, the better the pill works. Some patients are actually instructed to eat at least a teaspoon of salt daily!

Several weeks ago, I talked with Wanda, a lady with a permanent ileostomy who has Crohn's. She is missing so much intestine that she has Short Bowel Syndrome. She started describing this "weird salt habit" she has. She has to buy pickles in bulk at Sam's so she can eat the pickles and drink the juice! She takes jars of them to work so that they are always with her when the cravings strike. And she eats lemons with salt. And she craves "sour chips."

Hehe...there's more than one of us out there! ;)

To my UC/J pouch friends, anyone else have this issue? What's your favorite salty fix?

Hannah ;)