Sunday, July 31, 2011

Happy Ostomy Awareness Day!

Today, July 31, is Ostomy Awareness Day. I found this out through Jackie's blog. She is an earthy chick who has been through the wringer with MS and UC, requiring numerous surgeries.

Unfortunately, I'm sure you won't hear Ostomy Awareness Day advertised. In our society, having an ostomy is a taboo topic and highly stigmatized.

It's like how breast cancer used to be. No one wanted to talk about breasts, so breast cancer was a deep, dark secret for women for years. Thankfully, due to the hard work of many people, breast cancer now has more treatment options than any other cancer, and mortality rates are plummeting. We see pink ribbons everywhere. Breast cancer is publicized by the media and at football games and at the grocery store. It's amazing what raising awareness can do.

Lamentably, awareness for ostomies and IBD (Inflammatory Bowel Disorders) is still in the dark ages. Yeah, maybe ostomies are a little gross. No, they are not pretty. But diseases like IBD and colon and bladder cancer threaten the health, productivity, and well-being of millions of people. Many people with Crohn's and UC and cancers would greatly benefit from surgery to remove diseased bowel or bladder. For cancer patients, this is life saving. For those with IBD, it can restore the health we've lost and give us our lives back.

Sadly, people often shy away from these surgeries, because they are afraid of having an ostomy, whether temporarily or permanently. To these people, an ostomy is a worse fate than death or constant chronic pain and sickness.

I admit, I was once in this category. When my doctor first told me about J pouch surgery, he told me that some people choose to live with an ostomy rather than a J pouch. I looked him square in the eyes and said, "Well, that won't be me. We'll make the J pouch work, because I am NOT living with an ostomy forever." I never pictured myself with a permanent ostomy.

We need to raise more awareness about life with an ostomy. C'mom, people, having an ostomy is WAY better than the alternative. We need some vocal positive role models to show people that LIFE GOES ON after ostomy surgery... and it's usually much better than life was before surgery.

Is life with an ostomy different? Yes. Very different. I no longer have bloody diarrhea 15 times a day. Instead of running to the bathroom and having accidents, I can choose when to empty my bag. I no longer have constant stomach pain and cramps. I can attend events for hours and not need to sit near a bathroom. I am no longer anemic from blood loss. I have zero chance of ever getting colon cancer. ;) I don't smell like poop, and no matter what I wear, no one knows I have an ostomy unless I choose to tell them. I empty my bag whenever I feel like it, and I only have to change my bag out once a week, which takes me all of 5 minutes. I don't feel sorry for myself, and I don't feel different or ugly because of my ostomy. I feel better than I did with UC.

Here is a pic of me about to dive off a 5 meter platform (with Squirt, my ostomy, although I'm willing to bet you can't see him). I'm on the left, Claudia is on the right. There is really nothing you can't do with an ostomy. Rolf Benirschike, the NFL's 3rd most accurate place kicker ever, had an ostomy. There are ostomates who are firemen, mountain climbers, triathletes... you name it! Chances are, you know an ostomate... they just haven't told you about their ostomy.

More information on Ostomy Awareness Day.
Another site doing a great job of raising awareness and destroying myths about having an ostomy.

Hannah ;)

Wednesday, July 27, 2011

Leaky Seals

It's been almost a week since I updated... I've been really busy with school and NORMAL life, which is amazing. I like it. I am still having daily headaches, fevers, joint pains and swelling, but I am functioning and more or less passing for normal.

I had some pretty major issues with Edgar after the Friday change. He was just really loud, which means there is not a great seal on the dressing. When there's a bad leak, you can actually hear hissing from the air being sucked into the vacuum tube. On Sunday, I started hearing hissing. I used an entire sheet of tape trying to tape down everywhere I heard hissing. Then it started leaking. Wound juice was oozing everywhere. I used up tons of tape trying to re-seal it.

On Monday, I walked into the building to take a test in my genetics class. I visited the ladies room before the test, and discovered that... my wound was leaking everywhere. Great. I stuffed the dressing with toilet paper, took my test in record-breaking time (racing against the wound juice soaking through), drove home, and tried to patch it up again. It lasted for a little while, but, alas, not long. I tried again to fix it and ended up in a puddle.

I called the Wound clinic, but by then it was 8:30 pm, so I had to explain the situation to the on call receiver, which was, um, interesting. Then she got someone else, and I had to tell the story again. At the end, she said, "I'm actually in training. Let me have a real nurse call you back." Thankfully, the on call nurse quickly called me. I related my story for a third time, and she said, "Well, what you need to do is turn off the WoundVAC, take off the dressing, remove the foam, clean out the wound with sterile saline, pack it with sterile gauze, tape it in place, and go get some adult diapers or something to protect against the drainage."

Ok, but... do you understand WHERE this wound is? I got this awesome mental image of me doing all kinds of contortions to try to take care of this myself. I was envisioning me doing a backbend sort of thing, supporting myself with one hand, while the other hand is removing tape and packing. My head is doing 360s to try to see what's going on. Maybe I'd open the gauze with my toes. Problem is, I can't see what I'm doing, much less get the foam out (which has taken two nurses, with lots of tugging and pain), clean the wound, and repack it. And even if I can do that and tape it, since it's between my legs, the size changes any time I move, and the packing will not stay in and the tape will not hold. She asked if I had a friend I could ask to unpack and repack the wound. I've seen the wound, and it made ME nauseated - and I am not easily grossed out. Even if the wound weren't in such a, um, private area, I wouldn't subject anyone to that.

I was mildly upset at this point. I don't know; maybe all this doesn't sound like a big deal, but it is so very uncomfortable. Here I am, leaking wound juice all over the place. You feel so helpless and dirty and humiliated. It reminded me of when I first got Squirt and I had issues with the seal breaking and poop getting everywhere at MOST inopportune moments. Thankfully, my friend Megan was over, and helped me stay calm. I whined about how much this stinks for exactly 20 seconds, then we moved on. ;)

I ended up calling the wound care lady back. She said she was about to call me back. She remembered me, and the location and size and nature of my wound. On second thought, she figured I had better not try to mess with it or have someone else mess with it. I was supposed to come into wound clinic the following afternoon. I just asked if I could come in first thing in the morning, and she agreed.

I got there at 7, they changed the dressing, and I felt so much better. The foam again was super hard to remove, which confirmed in everyone's mind that it would not have been good for me to try to mess with it. Edgar was quiet, the wound wasn't hissing, I wasn't leaking, and I was as comfortable as you can be with a piece of foam up your rear, taped securely into place. The nurses said they felt terrible for me and were happy they were able to help. They are so sweet. I even was able to make it to the opposite end of the metroplex in time for my lab practical by 8:50.

I should tie this post together with some inspiring story about how we all are leaky seals and need to tape each other down securely or something... but, sorry, I'm out of analogies. I can't think of a clever way to drive home whatever huge spiritual lesson a leaky woundVAC dripping wound juice in my pants represents. ;) I guess I am just thankful for the sweet nurses who call me back at 9:30 at night to help me and come in early to work and never complain about having to stick their hands in yucky places and work for over an hour multiples times a week to help me on my journey to a life without ulcerative colitis.

And I already think that this whole story is slightly funny, which is a good thing.

Hannah ;)

Friday, July 22, 2011

MORE Wound Care

Today was wound care again... once a week I have "Assessment Day" where the wound care doctor measures the wound and takes a good look at it to assess my progress. Just like last week, the tissue looks fantastic - very red with lots of blood supply, and no infection. Unfortunately, the measurements are also exactly the same as last week. The wound has not closed up even a millimeter more. This is disappointing for everyone. The new plan is to put in this stuff (and of course, I've forgotten the name of it by now) that is like synthetic collagen. Collagen is the connective tissue that holds our bodies together. The theory is that this synthetic collagen will stimulate my body to make its own collagen to start pulling the edges of the wound together. Hopefully this will speed up the healing process.

We also made a major breakthrough. The nurse soaked the foam in lidocaine for a few minutes. This made the entire experience much less painful. YAY!

The bummer was that I had to listen to a nurse whose husband and husband's aunt have food intolerances (diagnosed by a doctor who got kicked out of/left Baylor), and have cured themselves with supplements from different websites and treatments from a doctor in Canada. I do not wish in any way to minimize their sufferings, and I am very happy that they have found health! However, it was very frustrating to have to listen to her for an hour and a half as she told me that I could have prevented all this by going gluten-free and taking supplements from these websites. She kept going, even after I explained that I did gluten-free for several weeks without effect. I also have had negative biopsies and blood tests and stool tests for gluten and celiac issues. I also continue to have symptoms even when I am not using my GI tract at all for weeks at a time. This had no impact on her, and she continued to go on and on. I just kept smiling and trying to be gracious... but, believe me, it was far from easy. ;)

Unfortunately, I have had a migraine since Tuesday. I went to the chiropractor today, which helped for several hours, but it's back again with a vengeance! It's making me pretty nauseated, so I haven't been eating well this week, which may be impacting my wound healing. I am also running low grade fevers and shaking all over (the nurses were like, "Do you realize you're trembling?"), probably because my arthritis is flaring. Also, they had to put in a more "bulky" (read: uncomfortable) dressing today, and Edgar is plugging away quite audibly. So I am a little bit throbbing and miserable all over...

But guess what? God is still good, and gives me more than I deserve in Christ! I had a neat opportunity to share just a little with the wound doctor. He commented that it's just not fair what life has dealt me, and that he doubted that he could endure a fraction of what I go through daily. I told him, "Well, life is not fair, but God is good!" He shook his head and said something about that showing unusual grace. He left just after that, but I know I'll have many more opportunities to share the hope and perspective Christ gives, as it looks like I'll be a fixture at the wound clinic for some months!

Hannah ;)

Tuesday, July 19, 2011

More Wound Care

I had another wound change, and boy, was I ready for this one. Friday's dressing left me very uncomfortable and hurting all weekend. I was dealing with leaks any time I moved (I had to do patch jobs every day, without much success), and my skin has started to itch quite intensely under the dressing. And it basically felt like I had a giant cocklebur in my wound. But really, I've been blessed - this weekend was really the first time that I had significant pain and discomfort from the wound. All that to say that I was actually excited to get the foam changed today. ;)

It was a tough dressing change; the tissue had really stuck to the foam and it was very difficult and painful and took a very long time and a lot of tugging (at least, it seemed that way to me!) to take out of the wound. Thankfully, the wound is showing no signs of infection, despite all the leaks and patches I had to do. My skin is really not a fan of the tape; in some places, the skin is bright red. In other places, the skin actually bubbles and peels off from the irritation. The nurses think that the itching and increased pain are a good thing - they are signs of healing. Let me just say again, I am continually thankful for the kindness and skills of the wound care nurses. They are so good and wonderful. They really do their best to make a very unpleasant situation more comfortable. And thankfully, I'm a bit more comfortable now with the new dressing.

As of last Tuesday, I am all caught up in my summer classes! And I took the GRE on Saturday. I had called the GRE and the testing facility prior to the exam to make sure it was okay for Edgar to accompany me in the test room. They said yes, thankfully. On test day, it was fun explaining Edgar the WoundVAC to every test proctor in the building. ;) I'm working on applying to Physician's Assistant programs. Most of them are 3 year Master's programs. If I'm accepted, I would enter in fall 2012. Now I just have to figure out a job or something until then! ;)

Hannah ;)

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 ;)

Thursday, July 14, 2011

New Meds and Wound Care

Wednesday was a day of many small victories... Dr. Saturday and I talked about the ER visit. He wasn't concerned about the elevated white count. He thought it was likely due to my open wound. He agreed with me to hold off on antibiotics, especially with all the trouble I've been having with my stomach.

He asked why I ended up in the ER, and I told him that I just got behind on fluids and was dumping really bad. No matter how much I drank, I just couldn't catch up. I was slightly shocked to hear him say, "You're right. You can't catch up! There's just no way." Um, ok... so what do I do? Amazingly, he had a plan... everything goes through me so fast that we need to slow down my intestines. That way, I actually have a chance to absorb stuff. He told me four different medicines I can try to use to accomplish this. They are all medicines I've taken in the past (and I still have bottles of 3 out of 4 of them), back in my UC days before I was a Semi Colon. I always feel so guilty if I have to go get fluids. I feel like if I had just been able to get more fluids in by mouth that I would have been okay. So it was nice to hear him say that it really is impossible for me to stay hydrated on my own at times.

I tried the meds, and eventually I was able to meet with success. To give you an idea... I took 6 immodium over several hours before the dumping even slowed down. I'm continuing to play with the meds to find the right amount to take based on how I'm feeling. I'm just glad that there really is something I can do to stay hydrated!

We went back to the downtown wound clinic on Wednesday. It was a somewhat miserable drive with a horrible back up from an accident. The difference with the care compared to the local clinic, however, was night and day. The nurses knew exactly what to do, and they did it quickly, efficiently, respectfully, and professionally. And they did an excellent job. Thankfully, the wound changes are getting less painful. They still hurt, but it is not excruciating or long-lasting pain. Yay! I'm thankful for the great care, even though it is a much more significant time investment.

Another wound change tomorrow!

Hannah ;)

Monday, July 11, 2011

ER and Wound Care

Well, what I neglected to mention in my last post was that I've been feeling rather awful since I got home from the hospital... super tired, very lightheaded, heart racing. At the wound clinic, my blood pressure was extremely low. I tried to drink a lot, but then I started dumping... I just got behind on my fluids, and I couldn't catch up, because my stomach decided to quit absorbing anything I drank. I talked to Endo Doc on Friday, and she told me to double up on steroids for a couple of days. If that failed, I was supposed to go to the ER for fluids. I don't really think steroids were the issue. When I am low on steroids, I have ridiculous salt cravings and I get really shaky, two symptoms I did not have this weekend. But I figured it was worth a shot!

Unfortunately, by Sunday, I still felt pretty awful, so to the ER we went. I felt tremendously better after I got "topped off" with some fluids, as my awesome nurse Mark put it. My white count is back up again, after having gone down to the lowest it's been in recent history. That's disappointing and a bit concerning, so per the ER doc's instructions, I placed a call to Dr. Saturday to see what he wants to do - probably more antibiotics.

My tummy is still dumping, which makes staying hydrated quite a challenge for me. And it's annoying because I have to empty Squirt's bag every hour. I'm working hard at pushing the fluids! Thankfully, I've been doing pretty well otherwise - my muscle pain has been mostly under control, and my joints are really doing fantastic! I've also been able to eat, mostly, despite the dumping, which is very good and exciting!

I had another wound change today. We tried out a local rehab clinic. Unfortunately, they don't quite have the resources or experience that the downtown wound clinic offers... and they only have male wound care people. I wasn't at all comfortable with the situation. So we've decided to bite the bullet and commute to the downtown hospital three days a week, on top of my school schedule that has me at the complete opposite end of the metroplex. This is a major bummer, but I think the drive will be worth it to get really good care delivered in a slightly more comfortable setting. The guy at the clinic did take a picture of my wound so I could see it (the photo was subsequently deleted, per my wishes). Boy howdy. It is gaping and bigger and uglier and far more graphic than I had imagined, and trust me, I have a pretty vivid imagination. I now understand why it's going to take so long to heal. It's amazing to me that God created our bodies so that they can heal even from massive injury and illness... He is amazing!

Please pray that my stomach will settle down so that I'll stay hydrated!
Please pray for wisdom for Dr. Saturday to decide what's best to do!
Please pray for my attitude, especially with the wound care... it is still very a very painful, time consuming, unpleasant, and embarrassing process. But necessary! This care will involve many, many hours each week for the next several weeks. But this is clearly what God has for me right now, and I'm trying to find joy in Him and be thankful in the midst of it.

I am taking summer classes - returned to class today - and I'm hoping that the downtown clinic can accommodate my schedule so that I won't miss class for wound stuff.

Hannah ;)

Saturday, July 9, 2011

Adventures of a Semi Colon: Hannah vs. Edgar

Be ye warned, this is an epic tale about a girl and her WoundVAC.

WoundVAC has been dubbed Edgar (think J. Edgar Hoover... think Hoover as in vacuum... got it?), many thanks to Heidi. Edgar has quickly proven himself to be a high maintenance side kick. Here's a picture of Edgar: (Actually, this is someone else's WoundVAC. Edgar is indistinguishable from this. I just don't own a camera to take a picture of him, so I Google imaged him). On the upper right, you can see a tiny bit of the tubing. That tubing attaches to my wound. You can also see part of the power cord (black plug with big white arrow on the bottom left). This becomes important later in the story.

On Tuesday night, the seal broke, resulting in horrible, nasty messes. That wasn't really Edgar's fault, but we'll blame him anyways.

Wednesday, the wound had to be repacked due to the broken seal. Again, not his fault, but again, I'm blaming him.

Thursday... I arrived at home with my portable Edgar. He gurgled continuously like a coffee percolator when the water is almost gone... you know that sound? To muffle the sound, I put two pillows and a blanket on top of him so I could sleep through the noise.

Friday morning, I woke up, elated that I had slept through the night. The pillows and blanket really did the trick; I couldn't hear Edgar at all. I uncovered him, only to realize that... he was dead. Yes, I had forgotten to plug him in. I'd like to blame him for this, but I really can't.

I quickly dashed across the room for the power cord I'd been given by WoundVAC Guy Who Thought I Was Under 18... forgetting, in my haste, that I am attached to Edgar at the... not hip, but you get the picture. OW. I picked him up, plugged him in, hit the power button... and... nothing happened.

Pictures filled my mind. I had no idea how long Edgar had been dead. And I have no idea what happens if your wound that is supposed to be being VAC'd (parse THAT, if you please) stops being VAC'd. But if it's anything like my mental pictures, it's probably really awful. ;)

I waited another hour, and tried hitting the power button again. And again. Nothing. And again. Black screen. I started pawing through my hospital paperwork, and found the number to the wound care clinic. Unfortunately, they couldn't help me; I needed technical support. Called technical support. It, ahem, turns out that you have to hold the power button down for, um, several seconds, and then the screen turns on. Yeah, definitely can't put that one on you, Edgar.

On Thursday night, I carefully plugged in Edgar, covered him with the requisite pillows and blanket, and drifted off. Friday morning, I awoke to a gurgling Edgar, and the sound was music to my ears. I unplugged Edgar to go to the wound clinic for a dressing change. What's that thing blinking on the screen? Low battery?!? But Edgar, you were plugged in all night! I fiddled with the charger, and turns out that the charger slips effortlessly out of Edgar when it should stay put. Edgar, sorry, buddy, this one's on you.

I waited in the clinic next to an outlet and held the cord in Edgar so that he could charge. Three hours later (I kid you not), the dressing change was complete. My nurses did SUCH an awesome job that Edgar was almost completely silent! Turns out that the noise he makes is directly proportionate to the amount of leak in the vacuum seal. These nurses did a fantastic job, ergo, no sound. Goooo nurses! One of the nurses wished me well and said, "Hopefully you're on the tail end of your health problems." Dunno about that, but SOMETHING is certainly on MY tail end!!

The only downside of the day was the doctor. He was a little old guy who walked in after the nurses had unpacked my wound. I was lying in the fetal position, covered by a sheet, open wound throbbing in a way that's difficult to describe. My bookbag, clothes, and waterbottle were sitting on the lone chair as I lay on the table. He started out by saying, "I'm just going to put your things here on the floor," as he proceeded to sit in the chair.

Those of you who know me, know my compulsion about hospital and doctor's office floors. I've seen what gets on them, and my bare foot will NEVER touch those floors, on pain of death. I walk with shoes on anytime I get out of my bed in the hospital. If there's only one chair in an exam room, I hold all my belongings in my lap. If I have to put on a gown for a procedure, my shoes (which have touched contaminated hospital floors) go in a separate bag from my clothes. So I minorly freaked out and said, "No, no, NO, please don't put them on the floor!!"

So he reached over to set them on top of a big red biohazard trash bin.

"Ah no, no, no, please give them to me, I'll hold them, please don't put them there!!" The nurse saw my consternation, and set my stuff on the table. Whew. My belongings had narrowly escaped a terrible fate and a nasty end. I would have had no choice but to incinerate/autoclave them, and unfortunately, my bookbag contained a library book. Not good for my relationship with the City of Grapevine, especially since I think I have some overdue fines.

The doctor, despite his questionable hygeine, turned out to be nice enough. After measuring my wound (guess what? It's still big and deep! But less big and deep than it was originally, thankfully), he left me with this tidbit: "WoundVACs are a great advance for helping wounds heal. Unfortunately, this is a deep wound in a, ah, challenging area. It'll take several weeks." He looked at my chart. "Oh, wait, so you had colitis? Oh, man, ah, people with colitis tend to not really heal up down there." So on the one hand, woundVACs are great. On the other hand, UC is not. Let's hope Edgar's greatness overrides UC's terribleness. I'm rootin' for ya, Edgar!!

As I was leaving (with a blissfully silent Edgar), I ran into WoundVAC Guy Who Thought I Was Under 18. "How's the VAC workin' for you?" He asked jovially. I related my power cord woes (NOT the user error woe where I forgot to plug him in, the part where the plug wouldn't stay in place), and he said, "That is a complete pain! You shouldn't have to deal with that! Call the number on the back of your VAC, and they will bring you new parts or fix it." W.VAC G.W.T.I.W.U.18, you are the greatest.

I called on the way home from the hospital, and within an hour (I kid you not), a KCI rep was at my door with a replacement Edgar. KCI, allow me to announce in the public domain, your customer service and technical support rocks. My doctor's office should call me back so quickly. The whole Edgar had to get exchanged, and my new Edgar puttered away very quietly.

This morning, I awoke to an occasional gurgle from Edgar, and a fully charged battery. This is the beginning of a beautiful relationship.

Hannah ;)

Thursday, July 7, 2011


I made it home last night!! Yesterday was very interesting... I had several issues with the wound and the woundVAC seal breaking beginning Tuesday night. Unfortunately, after several failed attempts at a repair, they had to completely change the whole dressing, foam and all again yesterday. Bummer and ouch - two days in a row! Then it started leaking again, so they had to come back and repair it again about half an hour later. Thankfully, there've been no problems since then, praise God!

Also, props to my nurse Lacy and the wound care nurse. I was really hurting after the dressing change, but they had discontinued all my medication orders. The wound care nurse talked to my nurse, who called the on-call doctor, who ordered a one-time dose of pain medicine to take the edge off. So thoughtful of them! Boy, am I gonna miss my central line and IV pain meds during future dressing changes. ;(

I got my portable WoundVAC set up. The guy brought it to me and taught me how it worked, then he handed my mom all these papers and a pen. I asked, "Do I need to sign those?"
He shook his head. "Um... are you 18?" He asked with a playful grin.
"I'm 23."
"Oh!! Well, you've aged gracefully!" Nice recovery. ;) And so I signed.

Getting out of the hospital was like pulling teeth! Discharge time is 11:00 am. I thought I was all ready to go! But then the wound care nurses had to patch up my dressing. Then another problem popped up, and the nurse had to call the doctor during surgery to get another med sent to the pharmacy. Then the WoundVAC guy had to come bring me the portable woundVAC. Then the nurse care coordinator had to come give me my paperwork for my dressing change appointment for Friday. Then the nurse had to pull my central line. Then I had to lay at a 30 degree angle for 30 minutes. Then I signed my discharge orders. Finally, it was time to go. "We'll just call transport. They'll come and get you in 15-20 minutes." Needless to say, it was rather trafficky by the time we got outta there!

Thankfully, we made it back home... but not before my mom stopped to buy me ice cream... she is the best! Not only does she stay awake with me on bad nights at the hospital, pack up my room when it's time to go and I'm not feeling up to helping much, cook me yummy food, and drive me home from the hospital.... but she gets me ice cream! ;)

I've just been taking it easy. I am very, very tired and sore. I'm having issues with my muscle pain sort of flaring up in a big way, but thankfully, I'm able to keep it under control for the most part with my meds. Another huge blessing is that I have been able to sleep, no problem. In fact, I fell asleep on the car ride home!

I am hoping to be able to return to my summer classes on Monday... we'll see how that goes! I usually crash for a couple of days after getting out of the hospital, then I'm much better. My professor emailed me today and indicated that I need to be ready to take a make up midterm on Monday! So I guess I'd better start studying.

Tomorrow is another dressing change, fun times. I will be having these on Mondays, Wednesdays and Fridays for the foreseeable future.

God is so good... He has brought me through yet another surgery and hospital stay. I am thankful for His goodness. Like I said in my previous post, while it's nice to celebrate victories (and believe me, I am celebrating being at home!), the war isn't over. Please don't stop praying for the Lord to work in my life through this circumstance, and that He'll give me opportunities to share the hope I have in Him.

Hannah ;)

Tuesday, July 5, 2011

Winning the Battle, Continuing the War

Today I made progress towards home! I had another dressing change, and thankfully, it was not as bad this time. The wound is already showing signs of healing, and is a little bit smaller! Still have a very long way to go, but it's exciting to see positive progress. (Gross alert) They packed the wound a little differently this time - they actually want the tissue to attach to the packing this time. That way, when they pull out the packing, the new tissue will be torn. This will be much more painful for me, but is supposed to stimulate faster healing. And I'm all for faster healing, even if it means pain in the short term.

I also talked to a urologist (another gross alert)... Of course, I only can have embarrassing health problems, haha. I've continued to have bladder issues, and they were really bad over the weekend. I basically have a lot of trouble going to the bathroom. An ultrasound today showed that when I do go, I'm not able to actually empty out all the way. This may mean that the nerves down there are damaged from my past surgeries, or I may have scar tissue messing things up. We are going to trial a medicine and then decide whether or not to pursue further testing to figure out what exactly is going on. This isn't a new problem, and it's not at the level that is dangerous to my kidneys or anything, so I may well decide to do nothing, to be honest. ;)

Dr. Saturday thought I could go home tomorrow, most likely! I am very excited. I am a little worried about pain management at home. I'm definitely sore from the surgery, but it's not bad at all. The trouble is that my muscles are really hurting off and on, and I'm still having occasional twinges of the abdominal pain. When I've been on the strong meds here in the hospital, managing my chronic pain with the pills (which I took before I had surgery) is sometimes a challenge. I had such relief from pain for the first few days after surgery... it was so great. I wish it had stayed like that, but I guess God has other plans.

Someone said something to me about seeing the light at the end of the tunnel, since I'm going home soon. I don't really feel that way right now. I have several weeks ahead of me of painful dressing changes and dealing with the woundVAC, and, unless God chooses to heal me, life-long continued battles against painful autoimmune disease and the after-effects of the invasive surgeries I've been through. I'm not saying this because I'm overwhelmed or upset or depressed or worrying about the future. I just want to emphasize that I may have won this battle, but the war is not over.

It's just like in our Christian life. We are not to be worried, despite the suffering and trials we face, but we have to be constantly vigilant. Peter expresses it like this: "casting all your anxiety on Him, because He cares for you. Be of sober spirit, be on the alert. Your adversary, the devil, prowls about like a roaring lion, seeking someone to devour. But resist him, firm in your faith..." (I Peter 5:7-9a).

Why do we give the Lord our cares? Why do we resist the devil, and stand firm? Because of the fellowship we have with other suffering Christians:

"...knowing that the same experiences of suffering are being accomplished by your brethren who are in the world."(verse 9b).

We also stand firm because of God's great promise to us:

"After you have suffered for a little while, the God of all grace, who called you to His eternal glory in Christ, will Himself perfect, confirm, strengthen and establish you."(verse 10).

What an amazing promise. Thank you all for the fellowship we share because of our common faith in Christ and our bond through suffering. The faith we share and the experiences we suffer through give me strength to keep fighting and to stand firm in my faith! Together we keep in mind the understanding of how temporary this is, and the help and hope God promises. What is our reaction to those promises? Peter says (and I echo):

"To Him be dominion forever and ever. Amen" (verse 11).

Hannah ;)

Monday, July 4, 2011

Happy Independence Day

Last night ended up being "same song, second verse, little bit louder and a little bit worse" in the pain department. I felt TERRIBLE. Thankfully, my mom and dad came down to the hospital to hang out with me. I kept begging them to stay "just a little bit longer!" Finally, my mom decided to spend the night with me.

I was a mess. There is a delicate balance in managing pain, yet being coherent. Unfortunately, for the last two days, I've felt completely drugged, but still been in so much pain. Last night, I was super loopy and confused, in addition to hurting, so I felt much better with my mom and dad there! They are the best!

Thankfully, today my pain and nausea have been so much better! I haven't needed any medication for nausea since this morning. Still working on the pain, but it's been much better controlled today. I asked the doctor about using my fav pain med (toradol, an anti-inflammatory), but due to the bleeding risk (I have a large, open wound), it cannot be used. He told me to "keep pushing your pain button," so that's what I've been doing. Today has been a lot better, but I doubt I'll be going home tomorrow.

Today I also spoke with the dietitian about how to eat to help my wound heal! She did calculations based on my height, weight, diseases, and wound, and found I need a ridiculously high amount of protein in my diet. Protein is crucial to healing this wound. She gave me my protein requirements, and lists of high protein foods. My job is to eat! ;) Today I did a good job. The goal is to meet my body's protein requirements with "real" food, but if I'm not able to, I can look into protein powders and supplements.

I get a lovely view of fireworks from the comfort of my air-conditioned lobby! Be jealous, fellow Texans! No sweltering in the heat for me!

Hannah ;)

Sunday, July 3, 2011

Father Knows Best

Well, God has done it once again... turned my bad news from Friday into good news. I had my hopes up that I'd be home this weekend, and then it turned out that I have to stay in the hospital until Tuesday. I was so disappointed.

Yesterday evening, I started to have sharp pain in my lower abdomen. It would last just for a few seconds, then go away, so I just ignored it at first. I also started feeling really nauseous. I've been nauseated for a couple evenings in a row, so I didn't think much of that, either. Unfortunately, the pain and nausea escalated quite a bit - similar to the severe pain I had after my first two surgeries. I spent most of the night curled up in a ball, moaning. Thankfully, I had great nurses who took good care of me. I was just miserable despite everything, so it was very good that I'm still in the hospital!

Today I've just been laying low. I still feel pretty bad. They did a couple X rays to make sure I'm not obstructed (I told them I wasn't, but they still wanted to check it out), which were normal. We played around with dosages and timing of nausea medication, and I think we've hit on a good plan to keep things under better control. I still have my button for pain, which is helping to keep the pain under control for the most part.

Please pray that my body will straighten itself out! I am not sure what's going on, but it is very similar to the "mystery pain" I had after my first two surgeries (although, thankfully, this pain, while very bad, is less intense). Please pray that my doctors would have wisdom for the best way to help me ride out the pain. Please pray that I would not be frustrated or discouraged despite this setback.

Mainly, I am so thankful to God that I was here in the hospital when the pain hit. Despite already being hooked up to a pain med pump, it still took hours to get the pain under control. It would have been much worse if I'd been at home. Makes me wonder why I EVER doubt God's plan and purposes. He knows what He's doing, and I just need to learn to be content! Thankfully, "When we confess our sins, He is faithful and righteous to forgive us our sins and to cleanse us from all unrighteousness" (I John 1:9). It was neat to see such a clear reason for why God kept me here. My Heavenly Father knows the things that I need, and I can always trust Him.

Hannah ;)

Saturday, July 2, 2011

Home! NOT.

Recovery has continued to go smoothly, praise God!! Yesterday morning, Dr. Saturday came in and said, "You're doing well... what would you think about going home tomorrow?" I about jumped out of my bed with excitement. Alas, it was not to be. My woundVAC needs attention that cannot be had over the holiday weekend unless I'm in the hospital. So I will be here until Tuesday.

I was disappointed, but the weekend surgeon remarked that it's probably safer for me to hang out in the hospital for a few more days. I'm sure he's right, given my history.

My muscle pain has started to come back again, which is disappointing, but I still have really good meds here at the hospital, haha. ;)

Dr. Saturday asked if I wanted to switch from IV pain meds to pills yesterday. I said sure, then said, "Wait, are they messing with my woundVAC today?" He said, "Oh, yeah, they are... how 'bout you keep the PCA for today?" ;) So I had my little button for pain meds during the dressing change stuff. I sure hope the woundVAC stuff gets less painful as time goes on. I am not looking forward to repeating this three times a week for 6-8 weeks!

Other than that, there's really not much to report! Weekends (especially holiday weekends) are very quiet at the hospital, and not much happens! Boring is good, though...

Kendra is done with her first two days of chemo! Woo hoo! She did great, and is enjoying family time this weekend! Please continue to pray for Kendra and Stephen and their families!

I've been blessed with visitors and calls and messages and flowers from several friends! Thank you so much for all your love and support!

Hannah ;)