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Tuesday, September 27, 2011

Chocolate Bunnies

I've mentioned this, one of my favorite shirts, in a previous post... I didn't wear it today (I was tutoring a high school student, and I want to continue the illusion, I mean, the impression that I'm a good kid in front of her mom, at least), but boy, this shirt says it all today.


On Monday, I went to Wound Care after a delightful 10 days off (and only three showers, boo - I was only allowed to shower every 3 days due to the special collagen dressings). I told my nurse that I doubted that the wound had gotten any smaller. Sadly, I ended up being right - the wound, in fact, has gotten LARGER. It was a pretty big disappointment that it has gotten bigger and had the nurse quite concerned. It is also REALLY hurting me. I think it's infected, but it was difficult for the nurse to tell, since I took a shower and cleaned it just prior to wound care. We decided to go back to my SeaSorb alginate dressing - no more collagen implants in my bootie. ;) And I can shower daily now.

Next, I went to see Dr. Saturday. The last time I went to see him (a month ago), he was quite surprised that I was still on the WoundVAC. So we set an appointment for the following month, believing that SURELY by that time, I'd have my perfect "Barbie butt." Last week, I realized that I wouldn't be healed. I called his office to see if he really wanted to see me, even though I'm not healed, but of course "Misinformation" did not actually talk to the doctor or call me back.

When Dr. Saturday opened the door, he stopped in the doorway. "I'm scared to come in," he joked, "I'm scared you're going to get another problem!" He decided to cauterize the wound with silver nitrate. This was an interesting experience. It is supposed to promote wound healing, I guess? He told me it would smart pretty bad. Once he was done, he asked if it hurt. I shook my head no. He chuckled and said, "I've hurt you way worse than this!" Hey, he said it, not me. ;)

He did not have a lot of helpful information or advice for my continuing issues with dumping, nausea, occasional vomiting, and belly pain. "Sounds like spastic colon," he said. I had to remind him that, in fact, I have no colon. "People like you, people who have had cancer do this, too. They have a symptom and are convinced something's wrong." Um, really? Frustrating. He talked to me about the medication I use to slow down my GI tract (Lomotil). I was surprised to hear that it causes side effects of dry mouth, double vision, and sleepiness or feeling loopy. I have not experienced any of these side effects at all, so he told me I must not be absorbing the medication. No wonder it's not working when I'm dumping badly... ;) I can increase my dosage above the directions on the bottle until I feel side effects.

My grandma has been having her own hospital adventures due to GI issues. Thankfully, after a "fun-filled" weekend of tests and procedures, she came home again late this afternoon. Please pray for her healing and for relief from her discomfort.

Thankfully, I saw that Nadia was able to go home today! Yay!! Please keep her in your prayers as she continues to heal and recover! She has been through so much. In addition to just being awesome, she is such a fantastic advocate and educator about IBD and J pouches and living with an ileostomy. I don't think I mentioned this, but I had actually seen some of her videos online before I met her - then I met her in "real life." How cool is that?

I am trying so hard to get better, so it's been a little frustrating to feel like I'm going backwards with the "chocolate bunny" feeling. It is so uncomfortable, no matter if I'm standing, sitting, or lying down. But, as the other bunny reminds me, it could be worse... I could be missing a chunk of my head instead of a chunk of my rear! ;)

Hannah ;)

Thursday, September 22, 2011

Pray for Nadia & Kendra!

Hi, everybody!

I am still really enjoying NOT being hooked up to tubes and NOT carrying around Edgar. I still reach for him every time I stand up or get out of bed. Then a little thrill goes through me, because he's NOT there anymore!

The wound is doing okay. It actually is feeling very sore and raw. I think that the WoundVAC helped to protect it and hold the edges together. Now when I sit, I feel a little bit like I'm splitting in half! As I now am responsible for performing my own dressing changes (an acrobatic feat in and of itself!), I get to look at the wound. It's big. It's ugly. It amazes me that it's only a third of the length and 1/16th of the depth that it was 3 months ago. It was HUGE at the beginning. This healing process has shown me in a new way that God has designed our bodies amazingly.

I saw Endo Doc early this week. It actually made me a bit depressed. She really thinks that I will be steroid-dependent forever, which of course, I did not want to hear! This means I will continue with my two different steroids, one once a day, and the other three times a day, for life. But thankfully, I am stable on my current dosage, and we have a pretty good system in place for managing my steroids on those days when my tummy is not working right. We will give the taper one more try once my wound has healed completely.

I am also working on healing emotionally right now... as I hit the one year mark of having my J pouch removed and all the complications that followed, I've realized that I've been through a lot! I've been sort of preoccupied with intrusive memories that I'd rather not have replaying in my mind! Anyways, God has provided numerous informal opportunities for me to reach out to other patients going through surgeries for IBD. This summer, however, I began to actively seeking out opportunities. After all I've gone through, I really want to reach out to others facing these challenges! This has been in the works for a long time now, but I will be revamping Semi Colon very soon to better explain my "story," and to provide more helpful information for others who are going through similar surgeries/dealing with UC/Crohn's.

So - to share just a couple of this week's very interesting and wonderful opportunities! First, I spoke to an ostomy support group about life with Squirt. They probably were more wonderful to me than I was helpful to them! It was great. Each person there has been through a lot, and has a unique and incredible story of how they got their ostomy. I met an ostomy nurse there, and I asked if she was able to give my name and contact info to patients. She is, so I gave her my info... and the next morning, I awoke to an email from the nurse regarding a couple patients. Turns out that there's a patient in the hospital who has a story that's incredibly similar to mine...

I went to visit Nadia yesterday. She vlogs and blogs quite extensively about her experiences - check out her popular site here. Meeting Nadia was awesome! Nadia is basically my clone! We felt like we were telling each other our own story - right down to pancreatitis as a rare side effect from a medication we took, to pouchitis resulting in permanent ileostomy... the similarities were crazy! She is going through quite a bit right now - she just transferred her care here from out of state, and is in the hospital for an abscess - another aspect of our lives that we share! She is new here, in this hospital for the first time (and pretty tired of having to relate her complicated health history to every new doctor or nurse!), emotionally adjusting to having a permanent ileostomy - yet, through it all, she has a tight grip on her sense of humor and her strong spirit shines through! Please pray for her recovery, for less pain and nausea, and for comfort! It was so very clear that God had wanted us to meet that it was giving me goosebumps!

Finally, my dear friend Kendra (fighting Follicular Lymphoma) had scans today - she is halfway done with chemo. Her scans showed some cancer, but the doctors are pleased with how things look and believe that she will be in remission after she completes her 6 rounds of chemo. Unfortunately, she was not able to receive her chemo today because her blood counts were too low. Please pray for her body to crank out more healthy cells (but for the cancer cells to DIE and never come back!). Please pray for her and her husband, Stephen. They are both under quite a bit of stress right now, understandably!

Hannah ;)

Sunday, September 18, 2011

No Strings Attached

Sorry for no post for a while... just haven't been feeling the blogging, I guess! I am doing okay. No crisis or anything horrible for a whole week! Muscle pain is still acting up and joints are unhappy with the weather. I've been dumping off and on, sometimes quite badly, for a while, but I think that's under control now. I'm having a bit of concerning stomach pain and nausea - concerning because it reminds me of how I felt prior to my surgeries this spring and summer - but hopefully it's just a bump in the road. Otherwise pretty status quo. The wisdom teeth recovery (aka, excuse to eat processed cheese food with a spoon) was completely uneventful and hardly even worthy of mention, thankfully!

Now for some news... I lost three pounds on Friday. Don't worry. These were three pounds I needed to lose - Edgar the WoundVAC!!!!! I'm not hooked up to anything - no tubes, no machines - just Hannah and Squirt, no strings attached.

That's right, after 80 days and 29 painful, humiliating dressing changes... I am DONE with Edgar! Praise God! The wound measured 0.5 cm less in length than last week, and the depth is 0.6 cm less! The doctor said he just didn't see any reason to continue with the WoundVAC... and he didn't have to say that twice! He is thrilled, the nurses are thrilled - everyone's happy! I am well on my way to having a Barbie Butt!

Unfortunately, being done with Edgar does NOT mean I'm done with Wound Care. I still have to have special dressings and continue to have the wound assessed. We are using a foam - type substance that is made of collagen. That's right; I'm getting collagen implants in my butt. Be jealous. ;) Anyways, next they put this alginate-type dressing on top of the collagen, then tape it all in. The crummy thing is that I'm not allowed to remove it or get it wet for 3 days - I am not allowed to shower. I told them I would try this, but I would reallllllly prefer something that I can change daily! It was already a mess 24 hours later. Due to my wound's location, this type of dressing is NOT practical. I don't (and I don't intend to) blog about all the difficulties I encounter many times a day for the last 80 days because of the location of the wound. I'll leave it at that. This cannot heal fast enough! ;)

I am a little worried that this final healing stage will take forever. For one thing, have you ever cut the webbing between your thumb and hand? You know, every time you move, it rips open again? That's kinda what I think will happen with this wound. Secondly, the doctor said that, because of my UC, it may have a lot of difficulty closing all the way up. Remember when they sewed my bottom up last year? The stitches, which were supposed to dissolve in a matter of days, took months to dissolve. But the skin never healed shut down there at all. So I am at pretty good risk of not completely healing up down there.

When I had Edgar (aaaaah, how wonderful to refer to that time in past tense!), he was always hanging from my shoulder, so everyone used to ask me, "Do you want to put your purse down?" I would always reply, "Oh, it's fine," but really, I was thinking, "You have NO idea how much I want to put it down!" Thankful to be free, no strings attached!

Hannah ;)

Friday, September 9, 2011

Wounds on Both Ends

Thanks for the prayers - the wisdom teeth thing went down with no issues! One tooth was a little troublesome to extract, but the whole procedure for both teeth took under an hour. I am feeling fine and experiencing pretty much no pain from my mouth, thankfully.

I am having a LOT of muscle pain, though. It has been off and on really, really bad for the last few days. Overall, though, I feel very energetic and stuff from the extra steroids I've been taking! I'm enjoying that it while it lasts. I expect I'll probably crash in a few days when my body realizes I'm back to a normal dose of roids.

So, today I went back to wound care, hoping that the doctor would tell me I'm done with Edgar! The nurse takes a look first and measures the wound, then the doctor comes in and examines the wound for himself. It's getting tough to get accurate measurements, especially on the depth, as it is healing unevenly. So while the wound looked smaller to Christina, the measurements were only a bit smaller, likely because it was measured in a slightly different spot last week. The wound care doctor came in... and... he said it looked good, but he would recommend going back to Edgar for "a while." I was so disappointed, and I asked if I had to. He said that I could make the call to stop the WoundVAC if I wanted, and the wound will heal with or without Edgar. It will just heal much faster with Edgar. So... I'm back on the VAC.

I'm pretty disappointed. But I pray that God will give me patience to continue to endure. Please pray for healing for, uh, both ends of my GI tract - the entrance (my mouth), and the (former) exit site! ;) The nurses at the wound clinic thought I was nuts for doing the teeth out while I was completely awake. "I'd be begging them to put me out!" I thought this was incredibly ironic, as I was the one begging them to stop while they extracted foam and tissue from my wound. I told them, no offense, but wound care is far more traumatic than having wisdom teeth out! At least they numbed me for the wisdom teeth!

Hannah ;)

Wednesday, September 7, 2011

Surgery and Good News!

Friends - I am having another surgery tomorrow.

Don't freak out; it's no big deal. ;) I am having my wisdom teeth out. Of course, they started to try to come in, and it's not working - they are impacted. I opted to have them extracted with no sedation. I'm just getting two teeth out, the sedation is expensive, and, let's face it, the meds don't even work on me anymore - I've been sedated close to 20 times. You may recall my experience with the last "sedated" scope I had - I was completely awake and aware and gagged and heaved throughout the entire thing. I figure that I have worse things than wisdom teeth extraction done to me while I'm completely awake (read: dressing changes), so I'll be fine. I'll letcha know tomorrow if this was a bad choice. ;)

Today was an exciting day - back to the clinic after an entire WEEK of freedom from wound care. My absolutely amazing, fantastic wound care nurse, Christina, told me last time that if the wound looked good today, I might be able to stop the WoundVAC therapy. So, I went in, we did a drumroll, I dropped my drawers, aaaaand... I walked out WITHOUT Edgar (but after pulling my drawers back up)! Christina said the wound looks great, I did a good job taking care of it (which is slightly amazing since I cannot actually SEE the wound or what I'm doing!), and I can continue until Friday without Edgar. Here's Christina and I - note that I am wearing a victory smile, and NOT wearing Edgar:


(In the background above our heads is the cool hyperbaric chamber!)

I can't give up Edgar for good yet - this is all unofficial. I have to get the official word from my wound care doctor on Friday. He'll give the final verdict and decide what kind of dressing to use from here on out. Likely I will only have to go into the clinic for 4-6 more weeks (until the wound closes up), but only ONCE a week. I am currently using a dressing known as SeaSorb - it is an alginate dressing that absorbs a lot of wound goo and speeds wound healing by promoting collagen formation. Oh, and it does NOT stick to the wound. So it doesn't make me unhappy when it comes time to change this dressing. Oh, AND, no tape is involved!

I am so thankful to God for allowing me to continue to make progress toward healing this wound! I have been doing a lot of thinking about everything I've been through, and it does a couple things for me: 1. makes me so thankful to God for bringing me through some incredibly difficult times, and 2. really puts things in perspective for me - it's hard to get upset about everyday annoyances when you've faced huge battles.

Please pray for an easy time with the wisdom teeth! I got to take double steroids today in preparation for the stress of wisdom teeth removal, so I feel FANTASTIC - normal energy, no shakiness or insane salt cravings - wish I could feel like this every day! Course, here it is, almost 1 am, and I'm still awake and blogging! So much energy! Love it! ;) Seriously, though, the doctor told me I will have a tough time afterwards - my body may not react well to even a simple wisdom teeth surgery - also, I already take pain medicine, so he tells me I will probably have a lot of pain afterwards.

I talked to Patt early this week. She sounds fantastic - a complete night and day difference to how she's sounded for the past few months. She was full of wit and wisdom - I just wish I could have tape recorded our conversation to catch all her wise words. She is recovering very well, just having to come to the realization that her problems aren't really "fixable," which is a difficult place to be. Please continue to pray for her healing.

Hannah ;)

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 ;)