Friday, July 15, 2011

Guarded Optimism

Today I had a follow up with Dr. Saturday. I actually saw his partner, because Dr. Saturday is out of town. Everything is going well, just have to continue with the WoundVAC. POOP STUFF: I'm still dumping something awful most days, so I asked him about the imodium. Turns out I can take up to 8 a day! He told me the goal is to have less than 1000 mL (1 liter) of output from Squirt daily. Oh. By the time I saw him at 12:45, I'd probably already had that much output. And I'd taken 2 imodium. He was rather impressed with my motility. ;) He said there's no way I can possibly stay hydrated when I'm dumping that much. He gave me a stronger med to try, one I'd taken in the past for UC. It worked better than imodium for me, so hopefully that's still the case! I'm excited to find the right combo. I really think that being able to keep my guts under control will really increase my quality of life! Being dehydrated all the time just makes you feel awful. And having everything go through me so quickly can really get me in trouble with absorbing some of my meds.

I also broached the topic of the whole wound care 3x/week. "Maybe we can do it twice a week?" He said sure, as long as I'm not having problems with the WoundVAC leaking, and if the wound doctor agreed. ;) Yessssss!

Next, I went to the wound care clinic. Everyone remembers me and is soo good at what they do. It is really a night and day contrast to the local clinic... Once a week, I have to see a wound doctor to assess my healing. He continues to balance optimism and reality. The tissue in the wound looks great; it's bright red, which means that it's getting lots of blood flow and nutrients to heal. The wound is getting smaller, too. He was very clear, however, that my wound has an extremely long way to go. It's still really deep. He was also guarded with his optimism and reminded me that I likely will not heal quickly or well due to my history of ulcerative colitis. He asked me if I was comfortable (if my wound hurt). I mentioned that I'm sitting in class from 8:50-3:00 Monday through Thursday. He winced and shook his head. He didn't say that I was doing anything harmful, just seemed very surprised that I could even tolerate sitting at all on my large, gaping wound. I asked him his thoughts on decreasing the wound care to 2x/week. He said that they usually change woundVACs 3x/week. This is because most people have WoundVACs because their wound is badly infected. Thankfully, mine is not, so he felt comfortable decreasing to twice weekly wound care. YESSSSS!

GRAPHIC WARNING: The wound changes are getting less painful. I can't even describe how much it hurt originally. Now it's better, although still very painful. To begin with, it's just in a very, ah, sensitive area with lots of nerve endings. First, they must remove all the tape and the previous piece of foam. Like I mentioned, the new tissue grows into the foam that fills my pelvic cavity. Each time they remove the dressing and foam packing, they actually rip out visible pieces of tissue along with the foam (this is actually supposed to encourage the cells to divide more rapidly and speed up the healing process). Then, after cleaning and measuring the wound, they tape "drape" around the healthy tissue to protect it from the suction of Edgar. Next, they must stuff a new piece of foam into the wound. This involves a lot of poking and pushing of the very raw, bleeding tissue of the wound. Then, they tape everything into place. They run a strip of the foam from the wound up to my hip. They affix the tubing - a small suction cup type thing with tube coming off it - to my hip, and attach Edgar. They must alternate hips, because the drape to protect my skin and the constant suction actually breaks my skin down. If everything is not taped down very securely, Edgar is very noisy (like a coffee maker). So they must apply pressure around the seal in various places to try to find the leak(s) and fix them. The wound is actually much more comfortable when it's packed (provided I have a good wound care person doing the packing). These days, the whole process takes between 35 and 90 minutes (35 -45 at the clinic, because the nurses are just so good at doing this).

Interestingly, Dr. Saturday sent me the pathology from the (least favortite phrase coming up again...) anal canal/tiny part of rectum/bottom of J pouch he removed. It showed a lot of inflammation and significant ulceration. It was very clearly ulcerative colitis-type inflammation and showed absolutely none of the markers that indicate Crohn's disease. This is good on several accounts. First, it means that prior to this surgery, there was still a part of my body that my immune system was attacking pretty severely. This means that my immune system in general may calm down now that the offending tissue has been excised. Secondly, there's always been a fear that I have Crohn's, not UC. Crohn's could come back in any part of my remaining intestines, which could be detrimental to my health, since I already lack so much length. Since the pathology looks like UC, this means that I likely do NOT have Crohn's and that the rest of my GI tract should stay healthy (although, admittedly we know that my remaining guts are a little bit "special" and don't work exactly like they should).

I don't want to declare "Victory!" too soon, but I think we're making progress! I am having a small amount of joint swelling and stiffness, mostly in my hands, and some muscle pain (and some soreness in my wound, especially after sitting), but honestly, my pain is really not so bad. I am able to manage it with a very reasonable amount of meds. Of course, there are bad hours here and there, but nothing NEAR the "pain flare" I experienced after my April surgery (where I ended up in the ER because I was hysterical from severe pain). I am unspeakably thankful for this. I'm hoping to cut back on steroids again in the next week or so. I'm working towards being able to manage my hydration issues. I'm rarely nauseated, and I'm eating so well. I really think that God is allowing my body to repair itself... and I'll continue with guarded optimism.

Hannah ;)


  1. Praise God for this encouraging news!!!! Keeping you in my prayers. His grace is sufficient -- and has to be, because I don't know how else you could endure all that you are going through with such strength and peace, not to mention...sense of humor!

  2. Such great news Hannah! I'm so happy to hear this. I hope more great news keeps coming and your body will continue to heal itself!

  3. Thanks for the encouragement, friends! Y'all make this path easier to walk.
    Hannah ;)