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Sunday, September 4, 2011

Operation

Patt came through her surgery. Unfortunately, Dr. Saturday deemed it too risky to perform the more extensive surgery that she likely needs, so she had a small surgery that may or may not help her very much. Please continue to keep her in your prayers. She is going through an unbelievably difficult time, and really needs some encouragement.

I had my two month follow up with Dr. Saturday. My amazing mom found me the perfect shirt to wear to this appointment:


It's the Operation guy saying, "You removed my WHAT?" Where does she find these shirts? ;) I actually had a nurse stop me and ask me what they removed. I tried to play it off, but she persisted. Um... yeah. They removed my anus.
Also, here you can see me and Edgar (aka my ball and chain). The clear tubing goes to my surgery site. He is pretty small and unobtrusive. When I'm around the house, everyone keeps asking me where I'm going - I look ready to go all the time, since I'm wearing a little "purse."

I asked Dr. Saturday what the deal was - he didn't exactly tell me that I'd still be carrying around a WoundVAC 2 months after surgery. He said that it usually doesn't take this long. I'm just special. ;) He was sad that I'd had to go back up on steroids a bit, but said that probably confirms that I am steroid dependent and will have to stay on the roids forever. I'm still holding out the hope that I will be able to taper again once my wound has healed. We'll see. He also mentioned how impressed he was that I lost massive amounts of weight this spring while on a fairly decent dose of steroids. Most people gain a lot of weight while on roids. Again, I am truly special. I have, however, gained 15 hard-earned pounds since my third surgery in April! He told me to watch out, or I'll get fat, but he couldn't even say that with a straight face. I'm getting close to my "healthy weight." As a girl, of course, it is really weird to have people commenting on your weight and weight gain, but I definitely needed these pounds!

On Wednesday, I went to the wound clinic. My skin is pretty bad again, so I wore Edgar til Saturday night, and now I'm on VACation again. It's lovely to not be hooked up to anything! And I'm hoping my skin will heal up. I don't have to go back to the clinic til Wednesday - I get a whole week off from wound care! Feels like Christmas! ;) The most exciting news is this: the nurse thinks I might be done with Edgar on Wednesday! She'll get a doctor to evaluate, and if he agrees, then I will kiss Edgar goodbye! The wound is now very shallow. It is still pretty long, and will take an additional several weeks of wound care before it closes, but we are definitely moving in the right direction!

This week has been really tough. I've been in bed for most of it - I am dumping very badly despite taking medicine that is supposed to slow my stomach down. I'm actually maxing out on that medicine without much effect. I feel very low on steroids - super exhausted, shaky, craving salt. My pain has been worse, too. I think I am not really absorbing my medicines because everything is going straight through me. I'm allowed to double up on steroids when this happens, but I have to do this very judiciously. If I go up and actually absorb it all, my body has a hard time when I go back to my normal dose. But if I get too low on steroids by not absorbing them, I get very sick. It's a very tricky balance.

Please keep Patt in your prayers! Thank you for your prayers for my friend Kendra. She is halfway done with her chemo! Thankfully, they have finally hit on the right "cocktail" of meds to keep her from feeling like she wants to die in the days following chemo. She is still dealing with chemo side effects of fatigue and nerve pain issues, so keep her in your prayers.

Hannah ;)

3 comments:

  1. LOVE the T-shirt! It amazes me how you fill your writing with humor. You inspire me!

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  2. Wow..Hannah you are amazing, your so upbeat and yet go through so much, I will remember this when I have my rectum removed and jpouch done in two weeks..will continue to keep you and Patt in my prayers..wishing you well...from Laura at http://ucitssolongcolon.blogspot.com/ I have linked you on my blog and will be writing a bit about you and your tshirt on my blog...hope this is ok. Take care x

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  3. Hehe... so glad my mom found that shirt! It's so awesome!
    @Laura - you will be in my prayers as you go through the next step of surgery - one step closer to being RID of UC! Yay!

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