Pages

Saturday, March 31, 2012

Hokey-Pokey

I'm feeling all hazy and yucky and nauseated and exhausted from too much pain and from the new meds. I am not sure which med is causing the side effects or if it's just pain and lack of sleep! I'm having trouble sleeping from pain and so my brain is just so shot right now. Hopefully my body will adjust and pull out of this very soon.

However... today was a major milestone in the life of this ostomate.

In June 2011, eight months ago this week, I had surgery to remove my anus (it was sort of like coring an apple - left a 10 cm long, 8 cm deep gaping hole). I was not closed up, but left open to heal from the inside out. I was attached to a WoundVAC for 80 days, underwent dressing changes and wound care three times a week for months, and have been daily caring for the wound on my own, including chemically burning the wound, since late November.

Because of the various dressings and bandages and restrictions, I was supposed to keep the wound area dry. This meant that showers were sort of like doing the Hokey-Pokey. "You put your right arm in, you put your right arm out..." Eventually, I was allowed to shower on the days that I went to wound care. This was three days a week, but it was in the hottest summer Texas has ever seen and my car's AC doesn't really work and believe me, I wanted to shower a whole lot more than I got to. ;) But it was okay - I just didn't get to feel "all the way" clean as often as I wanted to.

The other factor here is that I have Squirt, my ileostomy. You can, of course, shower with an ileostomy appliance. It's not a problem at all, just takes it a little while to get dry if you get the appliance really wet. But on the day that I change my appliance (which is now only every 7-14 days, which is really, really good), I like to be able to take off my appliance and shower without anything on my belly. It feels really good and gets the skin completely clean.

Of course, when I had an open wound, showering without my bag was completely out of the question. Squirt inevitably might "go off" in the shower, and that would be terrible to get waste in my wound. So, for 8 months, I've been unable to shower without my appliance.

Until today! My wound is so almost closed up that it's barely even a wound at all. I got ready to change my appliance and decided I could take a shower. As I stood under the faucet with the water running down my bare belly for the first time in 8 months, with the Hokey-Pokey tune going through my head, I thought:

That's what it's all about.

Hannah ;)

Thursday, March 29, 2012

Pain

The last few days have been rough. I have just been in so much pain (and/or so drugged) that I'm starting to lose it. My brain just feels frazzled all the time and all my nerves and muscles and joints are just screaming.

That's the downside. On the bright side, I can't say thank you enough to all of you for your love and support and care over the past few days, especially! I've had visitors, facebook messages, emails, calls, letters, texts... thank you SO much! Even if I haven't yet responded, please know that this means the world to me and has been an INCREDIBLE source of encouragement through some mighty tough hours.

I just don't even know how to describe how much pain I'm in. I just hurt so bad. And it's so exhausting. I wake up in a lot of pain, since my meds have worn off in the night, then after the meds kick in, I still hurt... then my heart starts pounding and I start shaking and I just curl up in a little ball, hug my teddy bear, and wrap up in a soft blanket. Heating pads, anti-inflammatory creams, hot showers, and ice packs are added as desired.

So... this is terrible, but... I forgot that I had an appointment with Dr. Pain early this afternoon. For some reason, I had this idea that it was at 3:30... no idea how that got into my head, but there it was. So around 1:45, I looked down at my desk and realized that I was supposed to have been at the Pain Dr 45 minutes ago. I called them and apologized profusely... and Dr. Pain agreed to go ahead and see me as soon as I could get there, because he's awesome like that. I felt terrrrrrrrible. I am NOT like that. I am just hurting so much and feeling so sick that I can't even keep track of the ONE appointment I had all day.

Anyways, Dr. Pain wants me to try another long-term med - an antidepressant that changes how your body perceives pain. I'm already on an anti-epilepsy med that is supposed to do something similar (although it hasn't done a thing for my pain, sadly). It's worth a shot, so I'm going for it. He discussed that the amount of steroids I went on for the joints was a pretty weak sauce burst, and I'm inclined to agree - that amount of steroids never phased my UC in the slightest. However, with me having a possible infection, doing a large burst of steroids is not a good idea right now. The new med is supposed to kick in after a couple of weeks. Until then... he gave me new and extremely powerful (even for me) pain meds, because I simply cannot continue to live in this much pain. He was fairly impressed that my pain was barely phased by all the meds I was given in the ER and after my surgery.

I told him that all of this freaks me out; that I'm scared about all the meds I'm taking, that I'm scared I'll be on them forever, that I'm always going to be in this much pain and nothing will help... and he hugged me. We talked about how this much pain is a really big stress on my entire already-delicate body (and for me, especially my adrenal glands), how we have to break the cycle of this pain, how I've had very very bad times with pain in the past, and I've eventually gotten through it, with the help of extra meds, and then gone back to my "baseline" meds and pain level. I hope all this is true.

Again, I want to thank all of you for your outpouring of love and support. It's been a tough couple of weeks. The fact is that I, along with 1.4 million other Americans, suffer from a vicious and debilitating disease known as Inflammatory Bowel Disease. Please see this recent post to see what you can to do help... I am seeking support and help as I raise money for the CCFA's Take Steps Walk in May! The CCFA (Crohn's and Colitis Foundation of America) raises funds for research and patient support for those suffering from IBD. Check out my team's page, and check out my personal page to sign up to walk with me or donate! Please help those suffering like me - consider forgoing your Starbucks drink and instead put that money toward a worthy cause!

Hannah ;)

Tuesday, March 27, 2012

Another Surgery Down

So I don't even know if today really "counts" or not as a surgery... but it's over and I'm home. ;)

Dr. Saturday took me back for less than an hour of examination under anesthesia. He wasn't able to find the source of the drainage or discern what the issue is. He's sending stuff to culture and will let me know the results! My white count is still elevated today, although my fevers have been gone for the past couple days.

I had a lot of trouble coming out from the anesthesia - dry heaved for three hours. I woke up in a ton of pain - not pain from the procedure at all, but my muscle and joint pain. It was soo bad. Thankfully, I was incredibly blessed with an amazing anesthesiologist and PACU nurse who worked with me to get things under control. The anesthesiologist said he understood chronic pain and kept apologizing that I woke up in that much pain and reassured me that he wouldn't let me go home until the pain and dry heaves were under control - even though the pain had nothing to do with the actual surgery. Yeah, my body is officially nuts. ;) Anyways, I was in recovery for HOURS before my body calmed down- eventually they had to transfer me to a room.

So even a very simple procedure turned out to be rather exciting! I am back at home now, feeling sort of hung over and queasy and hurting. I am thankful that the procedure didn't reveal any huge issues! I am not sure where we go from here - I guess just wait to see what the cultures say. Honestly, none of my doctors know what is going on and why I am so sick and in so much pain.

One of my favorite Psalms is Psalm 91, which I read a couple times yesterday and today. It begins, "He who dwells in the shelter of the Most High will abide in the shadow of the Almighty. I will say to the Lord, "My refuge and my fortress, my God, in whom I trust!""

God is called 4 names here: the Most High (Hebrew word El Elyon, emphasizing God's strength and sovereignty), the Almighty (El Shaddai, derived from a Hebrew word for mountain), the LORD (Yahweh, I AM, God's special name), and God (Hebrew word Elohim). He is referred to as a shelter, a refuge, a fortress, and trustworthy!

Later in the Psalm, God says, "I will set him securely on high, because he has known My name." (v. 14b). Knowing God's name means knowing His character - knowing who He is. Each one of the different names used for God in the first verses tells us something different about who God is. I know God's name - that He is all-powerful, omnipotent, God over all earth, heaven, and other gods... and that is a refuge and shelter even in times of difficulty and trouble.

Hannah ;)

Saturday, March 24, 2012

A "Fun" Catch-Up Post

On Monday...I went to see Dr. Saturday. He was very excited that my wound is soo tiny - like the size of a tic-tac. He was NOT happy about the joint issues, overall pain, steroids, etc. I've also been having more pelvic pain and some issues I'd been ignoring for... like months... more about that later... he wasn't thrilled about that, either.
Now you will think of my wound every time you eat a tic tac. 
My wound has continued to do better since we increased my methotrexate slightly a few weeks ago. He thinks that I have some manifestation of IBD on my skin, so when we suppress my immune system a little bit, my body is able to actually heal properly.With my general malaise and pelvic pain, he said he'd like to get another MRI in the near future. He was worried about another abscess, but said it would be highly unlikely after all this time.

Later that afternoon, I went to a new doctor... a urogynecologist (did you know that they made doctors in that flavor?? I didn't). This is all kind of embarrassing to talk about, but IBD is a disease of taboos and embarrassing problems, so I figure I'll break the silence and just continue. I've been having some pelvic pain that's gotten progressively worse, and a drainage issue that has also gotten progressively worse. We were concerned about a possible fistula between my bladder and my reproductive system, but after some very "interesting" tests and exams, she seemed pretty sure that wasn't the case. Rather, she thinks that... wait for it... I still have an abscess and it is connecting with my uterus and draining and causing some issues. She didn't seem overly alarmed, but started me on some antibiotics and said she'd order an MRI. I had a terrible reaction to one of the tests they did (it involved filling my bladder up with blue dye... doctors can DO that?? Some doctors have all the fun!) - for whatever reason, my body decided it had had enough and I ended up shaking and sweating and dry heaving - my body was NOT happy.
I did not look like this following the test
She almost made me go to the hospital to get checked out because I was so uncomfortable. No idea what the issue was, but finally I made it home.

So... this week, my overall joint and muscle pain continued, and I was so miserable and not getting any relief despite the steroids and everything else. Finally, on Thursday evening, I went to the ER, where they juiced me up with all kinds of good meds. Unfortunately, even THAT barely took the edge off. It was nuts. I was soo miserable. Thankfully, I was blessed with two very, very nice nurses and a wonderful NP (and one not-so-wonderful doctor, but I only had to see him for a few minutes, and my interaction with him was surely colored by my extreme fatigue, pain and feeling-awfulness). My white count came back rather elevated - quite a jump from the last labs I'd had, so I figured I was definitely inflamed or something. The doctor discussed admitting me, but a final round of meds did the trick and I went home. I had been hospital-free since July, so I was very sad to break that record, but the relief was pretty desperately needed.

Friday I started the ever-so-fun journey of trying to decide which doctor to even call to get some longer-term relief. I left messages at the Rheum and Pain doctors. The Rheum nurse called back and told me to also call the Urogyn dr, which I did...
I think I need this phone
Finally, the Rheumatology doctor herself (who I have not seen in months) called me back. She asked why I hadn't seen her in so long, why I'd just been seeing the PA. I'd been wondering the same thing, so I wasn't sure what to say. They she asked who had prescribed a certain med I'm on. The PA had prescribed it to me, so I said, "Y'all did." She said, "I didn't! This isn't a med I like to use!" Oh. The PA told me to try it... should I not? She said it was fine, just addictive and dependence building and dangerous to get off of and things like that. Oh. Okay. Would that there were better communication between these providers! Feels like they're working against each other at times. I had assumed they were at least discussing these things, even if I didn't see the doctor, but I guess not. So frustrating from a patient's perspective. Anyways, she listened to my story of pain and woe, and then said, "Well, this is out of my department. You have a recurrent abscess, so you need to talk to your surgeon." She reminded me that I should probably skip my methotrexate till all this is sorted out, which is good, because I hadn't thought of that for some reason. Not so good to suppress the immune system if the body is trying to kill an infection.

Dr. Saturday had given me his cell number, since he's awesome like that, and so... I called it. On a Friday afternoon, because that's what time it was by the time I got off the phone with the Rheum doctor. He is awesome, so he got me scheduled for an MRI (not a CT scan, because he's awesome) and an appointment... for Saturday, because he's Dr. Saturday, after all.

So that catches me up to today. I got the MRI, saw Dr. Saturday... and... the MRI didn't show any abscesses that they could see - some fluid from a ruptured cyst, but that was it. But with the overall clinical picture - the low-grade fevers, feeling so badly, elevated white count, and pelvic pain, and drainage, he was rather concerned and wanted to check things out. So... on Tuesday, I am having an Exam Under Anesthesia (basically a small surgery although hopefully without cuts) to assess what's going on, where the drainage is coming from (where the abscess is) and figure out what to do. He felt that he was the more appropriate doctor to do this, not the Urogyn, since he is most familiar with my anatomy and issues. I am inclined to agree - he's done some pretty weird surgeries to my body, so I'd rather he try to sort out whatever issues I'm having than have someone else trying to figure it out.

So, why does having some kind of pelvic infection cause systemic pain issues? I have no idea, but I think that it's happened to me a couple times before - like before I had my J pouch out, and in between my surgeries last spring. I think that whatever's going on really started flaring up back in late January when I started having all the adrenal issues again out of the blue...then my pain started flaring and it's all kind of spiraled down from there. I've also lost about 5 lbs, although I'm eating well and my appetite is quite good. Dunno if that's coincidence or not, but I definitely feel like my body's been struggling.

Tuesday morning, I will go have the procedure. If Dr. Saturday sees nothing, then I dunno what we do. If he sees whatever's causing the issue, then he can 1. try to fix it while I'm under, or 2. wake me up and do more surgery later. So I'm really not sure what to expect or want or think... but thankfully, that's not my job. ;) My job is to just keep trusting in God, the One who is in control of not just my confusing body and my doctors, but the whole universe. So that's a pretty secure place to be.

Hannah ;)

Tuesday, March 20, 2012

Live Wright Society Pays it Forward!

Sometimes in life, you have the incredible opportunity to be involved in something that's much bigger than yourself.

I've been blessed with just this sort of chance. This summer, I was approached by the Live Wright Society to appear in a documentary about overcoming IBD (Inflammatory Bowel Disease).

I was honored to be able to give a few interviews over the past several months and play a part in this project. The Live Wright Society went on to present this and other documentaries at a huge fundraising event called Pay It Forward on Friday, March 9.

Many thanks to the numerous individuals whose dedication and generosity made this project and event possible. You are helping to raise awareness, encourage others, and break down the stigma associated with IBD!

Check out the video here.

Hannah ;)

Please check out the previous post to find out how you can participate in this year's Take Steps Walk to raise funds to help fight IBD!

Sunday, March 18, 2012

Rheum Visit

So, once again, it's been a couple weeks since a substantial helath update. I'm sorry; sometimes I just don't feel like I have anything new or different to say that I haven't already said at some point on my journey... and then a bunch of stuff happens and then I'm really backlogged.

I have been having a really tough time with pain for the past several weeks. My mom pointed out that this is the third year in a row that I've had a bad "pain flare" around this time of year. The last two years, it's been in April. I guess this year it decided to come early! I finally called my Rheumatologist on Friday because it had been bad enough that I was pondering going to the ER. The PA got me an appointment, which was very nice, and so I got my sweet little brother to drive me there, since I was in no shape to be behind the wheel of a car.

I arrived, and I got a new nurse who was bent on following procedure to the letter. I was in such terrible pain and just wanted to curl up and die... and it took her 20 minutes to review my medications. It was a test of patience. You know how usually you get checked in by the nurse, and then wait awhile to see the doctor? This took so long that the PA was actually waiting outside the door for her to finish.

The PA came in and told me that she'd been talking to one of the doctors, and was thinking about doing Remicade and sulfasalazine for my arthritis and Crohn's disease. The only problem is that I don't have Crohn's, sulfasalazine gives me pancreatitis, and I "failed" Remicade a few years ago, and it's supposedly less effective if you go on it after having stopped for more than a few months (although it may possibly still be an option).

She looked at me in surprise. "But you have Crohn's!" Well... no. I don't. I had UC. "But if you had UC, you should be cured since they took your colon out! You shouldn't have arthritis!" I know... tell that to my body!

I've exclusively seen the PA every time since last fall, at least 7 times, so it made me slightly nervous that she doesn't know that I had UC, but after working with medical professionals, I know that they don't (and simply can't) have patients' charts memorized. I'll also be the first to admit that my chart is probably bulging at its metaphorical electronic seams. So I can't really get too worked up about that. But patients, remind your health care provider every time of your diagnosis, meds tried, and allergies. Although my rare and very serious reaction of pancreatitis to a sulfasalazine derivative is listed under my allergies, I can't tell you how many times they've tried to put me on some type of suflasalazine medication. Be your own advocate... or you might die. Just a friendly dramatic tidbit. ;)

Anyways, she had to revise the plan, since she didn't realize that Crohn's wasn't my diagnosis, that I've already done Remicade, and that I have a life-threatening reaction to the other medication. After some discussion, we decided to try a short course of steroids to see if that will help the low-grade fevers, joint pain, and muscle pain. If everything improves, we know it's inflammation related. If the muscle pain fails to improve, but the other things do, we could infer that the muscle pain has a different etiology. If nothing improves, then I don't know WHAT we think, but we'll cross that bridge eventually. ;)

Hannah ;)

Wednesday, March 7, 2012

Take Steps to Cure Crohn's and Colitis!!

In 2007, I was busy juggling Spanish and Honors classes, Nursing clinicals, teaching Sunday School, and NCAA Division I athletics as a diver. In the middle of the fall semester, I was hospitalized and given the life-altering diagnosis of Ulcerative Colitis, a type of Inflammatory Bowel Disease. UC is an autoimmune inflammation of the large intestine, leading to abdominal pain, cramps, bloody diarrhea, weight loss, and nutritional deficiencies. Because of UC, I had to take time off school, change my major, and quit diving as my life began to revolve around my illness. I went through innumerable tests, medications, infusions, treatments, hospitalizations... and rolls of toilet paper.

After two years, I'd unsuccessfully tried every medication approved for UC (and a few that weren't!), so it was time to have surgery. Four surgeries and 25 hospitalizations later, I'm down 7.5 feet of intestine, but not an inch of my faith in Jesus or my sense of humor! Although I no longer have a large intestine, I still face many chronic health issues triggered by my UC and the treatments I endured to manage it. I have to take more medications than my grandparents, and my calendar is booked with doctor's appointments.

My story is far from unusual among those who suffer from Inflammatory Bowel Disease. Crohn's Disease and Ulcerative Colitis, the two most common forms of IBD, affect 1.4 million Americans. To put that in perspective: for every child in the US with cancer, there are 400 Americans with IBD (http://www.cancer.org/Cancer/CancerBasics/cancer-prevalence). There is no cure and little awareness for IBD. The treatments we currently have come with daunting side-effects, and only work for a limited number of people for a limited amount of time. Drastic, life-altering surgery to remove the affected intestine is often needed.

On May 19, I am thrilled and honored to be partnering with the United Colon Vlog Team at the Take Steps for Crohn's and Colitis Walk! The Take Steps Walk is a fundraising walk put on by the CCFA (Crohn's and Colitis Foundation of America) to funds research for better treatments, support for those affected by IBD, and Camp Oasis, a camp for kids who suffer from IBD. Obviously this is a cause that is very close to my heart. So many people have asked me what they can do to help me. I would be honored if you would join my team and walk with us. Additionally, my personal goal is to raise $800.00. I would be grateful if you would forgo your favorite Starbucks beverage once or twice and instead put that money towards this worthy cause. Every donation, no matter how small, gets us one step closer to a future without IBD.

Help me reach my goal!

Click here to see our page.

Click here to see my personal page, to donate and/or to walk with me!

Thanks for your support!!

Hannah ;)

Thursday, March 1, 2012

Lab Adventure

So after the adventure that was the Rheumatology appointment (which left me thinking that one of my new criteria when choosing a doctor will be the location of the patient parking), I continued to hurt worse and worse. The Rheum PA wanted me to go get labs done (which I refuse to do at her office anymore after getting hit with a bill for $522 for a routine blood test. The insurance ignored 98% of the bill, but still, that's completely ridiculous, so on principle, I boycott their lab), so I went to my PCP's office to get the labs drawn. I actually made my mom drive me (and those of you who know me, know I was feeling pretty low to ask someone else to take me). They called me back, and I sat in the chair while the lab lady started trying to figure out the orders. The lab lady and I are tight; she draws my blood about once a month. I started feeling super lightheaded from pain, and she said, "You don't look good." I told her I was really hurting. She went back to ask someone a question about my lab orders. Another nurse walked by and said, "You don't look good. Are you okay?" I said I was really hurting. She thought I was getting woozy from having blood drawn, but they hadn't gotten close to me with a needle yet, and I inject myself weekly. I'm not scared of needles. The lab lady came back, and I told her I was not okay. I was hurting so badly that the world seemed like it was pulsing in time with my heart. She quickly drew the labs, then they had to lay me down in an empty room. I was gray and incoherent. It was super embarrassing. They got my mom and everything. I had eaten (quite a lot for me, actually), and my adrenal stuff was okay, so this was a pain thing, not low blood sugar or steroid issues. Once I was able to piece thoughts together well enough to get some words out (my brain was just thinking "OW!" for a while there), my mom got me some water and I took some pain medicine. I told my mom that if the pain meds didn't work, I would probably need to go to the hospital.

Thankfully, God allowed me to avoid the hospital. I've been seeing a chiropractor several times a month since April 2010, and 3x/week since November. It hasn't made a difference, so I recently switched to a new chiropractor. He had seen me Friday morning, but I called him and said, "I'm probably heading to the ER. By chance, might you be able to help?" He let me come back in and he adjusted me again and worked some of the knots out of my shoulders. I dunno if it was him or the drugs or a combo, but no hospital was needed. I stayed very stoned on the couch wrapped in a blanket for the rest of the day. ;P

After bottoming out on Friday, I started inching my way back to "normal." Each day has been a little less painful than the previous, but unfortunately, after a few months of remission, my joints have decided to really flare up. The "morning stiffness" lasts all day.

My wound, however, is doing fantastic. It is almost back to where it was before it split open!! Yay! I can't wait for it to be all gone and better.

Also, I want to do a shout-out to the newest card-holder in the "Colon-free Club:" Sandy! Sandy had her surgery last Tuesday! Pray all went well and you are on the road to better health! Also praying that your adjustment to having an ileostomy goes well!

Hannah ;)