Update!

Hey everyone!

So, I'm getting super tired of the hospital- it's been nearly a week now. But I met lots of doctors today already! I finally met my surgeon Dr. Buie, and he said I'm on a waitlist for OR time and should be in this week. He said he'd have a date and time for me either today or tomorrow. Dr. Ferroz (the GI guy whose care I'm under here) said he thinks I'll probably get in on Thursday, which isn't so bad really! I can suck it up for another few days. I also spoke to gynecology about my dermoid cyst, so they're gonna remove that while I'm under for the bowel stuff. May as well spare myself another surgery!

My meds are pretty regular now- I get them at 7 am, 1 pm, 7 pm, and 1 am, so if you come to visit me, at 7 and 1 I have to go back up to my room for an IV, but otherwise I'm free from my IV pole and can walk around! Texting me is the best way to reach me if you can't find me in my room- 650-3205.

My nurses are pretty awesome- my favorites are the night nurse whose name I can never remember cuz i see her at night and am only ever half awake, and my day nurse named Paula.

Since Foothills is a teaching hospital, sometimes students come to check on me with the doctors. Today one of the GI fellows named Dr. Sarah (can't remember) was fascinated with the fact that my Crohn's has all these systemic symptoms, i guess they don't really see that much, so she's gonna bring students by to come look at my clubbed fingernails and toenails. Apparently they're "really neat". lol... gastroenterologists are an odd bunch. She seemed disappointed I didn't have any erythema nodosa to show the students at the moment though, lol.

Well, that's really all I have to update... once I go in for surgery, I'll be here for a week or so still. There's really no need to come visit me the first few days after my surgery, as I'll likely be poor company, lol. I may also be in a different unit, so it may be best to check with Kyle or the hospital to see where I am so you don't get lost!

Kyle will be posting updates then, since I won't be able to, so keep watching the blog! Also, if your'e super, super curious, you can always phone the hospital- I gave them permission to give my status to anyone who calls.

Thanks for all your prayers and well-wishes and visits!!

Leanne :)

Hospitals suck

Hey everybody! I found an internet kiosk at the hospital so I thought I'd write a quick update.

Thanks everyone for coming to visit- it's incredibly boring in here, I just sit in my room on an IV pretty much, so visitors are welcome!! As Kyle updated, I have to wait to Monday to find out when I'll get in for surgery. The doctors have told me that it may even be a week or so, so if that's the case, I'll probably be sent home, maybe on day passes, or maybe even at night, depending on meds, to wait for the surgery.

I've had some interesting experiences in the hospital, including having a homeless roomie named Billy (shame none of you guys got to meet him, he was a character) and a very spunky 90-year old named Rose who told me her secret is to "use it or lose it".

The nurses are pretty great, and today I got taken off a saline drip, so I'm no longer tied to the IV (which Stu christened "Olga") except for a little bit here and there for meds. I got a daypass for the day tomorrow to go for dinner for Mother's Day, and I may even be able to make it to church, if they let me out early enough!

So, God willing, I'll see some of you guys tomorrow at church!

Again, thanks for all the prayers and visits and gifts, and I'll make sure to update (or at least get Kyle to do so) as news comes!

-Leanne

In the Hospital

Leanne is currently in the Foothills hospital right now and asked me to make an entry on her behalf, explaining her current situation.

She was admitted into the Foothills at 3:00 yesterday afternoon. After further examination, however, the doctors have determined that surgery is indeed necessary. They will be removing a section of intestine, aprox. 5 or 6 inches or so, as well as draining the abscess and taking out the appendix.

The incisions will be kept to a minimum, assuming all things go well, and will drastically reduce the amount of recovery time. The surgery is on monday.

She's in very good spirits though (as you can tell from the unflattering picture) and had a total of 13 visitors today. Please go visit her if you are able! Until the monday she's just killing time and i'm sure would love to have some company.

She's in Unit 62 of the Foothills Hospital. Her room is shared with 3 others and is just off to the right of the nurses desk. Visiting hours are from 11:00 am to 12:30 pm, as well as from 2:00 pm to 9:00 pm.

God willing she will only be in for a week or so after the surgery, and then she can go home. The total recovery time will be roughly a month or so, however.

That's about all I know, but I will update as she asks me to.

Kyle

Woot woot!

Hi everyone!

So, I sort-of know what's going on now!

Dr Kaplan got the CT scan results- he said they did find a little abscess, but apparently my body has "walled it off" so it's not very large, and isn't getting larger. I'm being admitted to the hospital today at 3 pm to get some intravenous antibiotics, so I'll probably be there for a couple days I'm sure, but it doesn't look like surgery is going to be necessary (unless, of course, the abscess gets out of hand or doesn't respond to antibiotics, but we'll cross our fingers here).

Still don't have much info otherwise, since this has all been via telephones- I'm sure I'll learn more about what's up when I see Dr Kaplan in the hospital. But at least for now it looks like I'll just have a short stay in Chez Foothills Hospital, hopefully not in a stretcher in the hallway, for some antibiotics.

I'm a little nervous about it, but I've got my bible, some books to read, my iPod, Nintendo DS, and mom even bought me a little yellow fuzzy bathrobe to wear in there over my gown, so I'm sure I'll be fine. :) I'll likely just feel gross from the meds and bored from the lack of things to do!

I'll make sure to get Kyle to post updates to my blog while I'm in there- if I end up being there for a while, come visit if you want, I'm sure I'll be bored senseless. :P

Wish me luck!!

Yikes!

Hi everybody,

Well, much has happened since the last update.

I went in for those ultrasounds Friday afternoon, thinking it would be a short 30-minute affair like my other ones have all been, and ended up being there for a little over three hours. I had a really nice ultrasound tech for the first part who chatted with me and let me see stuff on the screen though, which was kinda cool (though the stuff I was seeing isn't good). My goodness are some parts of my intestines huge- he said the walls were thickened in spots almost three or four times what they should be, and there was quite a lot of blood flow to those areas that I saw on screen.

He was pretty thorough, but after he was done, two doctors wanted to have another further look- the first guy had gotten less chatty near the end and looked concerned, so I was worried they found something unexpected. They moved me into a bigger exam room where the 2 doctors, the tech, and an aide/orderly/whatever gave me injections of contrast and took more ultrasounds.

The doctors were pretty concerned at this point- they told me that they wanted to do a pelvic ultrasound as well, so I was moved to yet ANOTHER room and they did that (mortifying, btw, because the ultrasound tech was a really, really good looking young guy, and they didn't exactly cover me up well during that one... eep).

The main ultrasound doc told me that they had found lots of inflammation (expected), and in the spot where I'd been having my severe pains, they found a microperforation and a stricture. Not so good. A perforation is a hole in the intestinal wall, and a stricture is an area where the walls of the bowel are so thickened that barely anything can get through. Apparently the area is basically just on the verge of a big infection- it's not abcessed yet, thank goodness, which can be pretty bad- and another major concern is blockage. The doctor didn't want to let me go from the hospital but her hands were tied, so I went home and waited for Dr. Kaplan to get ahold of me.

On Saturday I talked to him, and he said it looked like the perforation had healed up on its own, but the issue is that there's significant inflammation and free fluid in my abdomen (which makes sense since I basically sprung a leak). He told me that I'd need a CT scan to get a better look at things, since ultrasound can make things look worse than they are. If the area is infected, I'd be hospitalized and get either IV antibiotics or surgery, or both. He put me on antibiotics ASAP (ciprofloxacin and some other one I can't remember right now) and told me that if I felt any worse, I was to go to the ER at Foothills right away and ask to see Dr. Panaccione (a GI that I've heard a lot about).

On Monday morning the whole hurry-up-and-wait ordeal began. I was prepared to be admitted to hospital that day if necessary, and played phone tag with people all day about getting in for the CT scan. Dr. Kaplan had no luck getting me in that day, and wanted to admit me to hospital to hurry the tests. However, there were no beds available either! Unfortunately, I basically ended up waiting all day for nothing, as I couldn't get in that day for anything. They did manage to get me in for the CT scan Tuesday morning, and told me to be prepared to be admitted to the hospital Tuesday too.

Tuesday morning I had my CT scan- routine, pretty much. Drank the two litres of water stuff over two hours, and had an IV contrast injection, then the scan, and went home to wait for more instructions.

Around 3 pm Dr Kaplan's office phoned, and his clinician, Val, explained that they still didn't have the CT results back, and that no beds were available to admit me to hospital, so basically I have to wait- again! She said they'd page Dr Kaplan as soon as the CT results were ready, and gave me a number to call Weds. morning about getting admitted. She said Dr Kaplan would call me about the results when they were in, assuming I don't get admitted first.

So as it stands right now, I still don't know what's going to happen- I have no idea if I'll have surgery or not, but Mom and I feel like they're leaning towards it, since it's the thing Dr. Kaplan talks about the most, and since they're still trying to admit me to hospital even without the CT results back yet. If I do need surgery, I don't know what ones yet. Best case scenario, I just stay home and take antibiotics, worse case scenario, they take out some bowel tissue.

So hopefully Wednesday will be an enlightening day, and I'll finally get some word about what's going to happen, and hopefully get the ball rolling here!

It's super stressful to have to wait around like this, but unfortunately, this is the norm in Calgary right now, with the medical system (and Foothills in particular) being pushed to the limits. The worst part is not being able to plan anything. We're really short staffed at work right now- to the point that there's really nobody to cover for me- and I can't even tell them what shifts I'll be able to make, or if I'll have to have an extended leave of absence. Too, I'm registered for spring session classes, which I may have to drop if it turns out I need surgery, so I have until the 14th to figure that out.

Keep checking back for updates over the next day or two though- I'll certainly let you all know if I have to go to the hospital and what the results of the CT scan were. Keep me in your prayers- please pray that I'll be patient and that I'll be in the hands of good doctors.

Prednisone- Round 3!

So, things have been a bit of a mixed bag lately.

I've gained back about 25 pounds, which is awesome- I'm happy weighing 140 lbs, that's below my target weight when I was in Weight Watchers a few years ago. My hair's growing back quite well, though it's leaving me with all this ridiculous frizz that's a couple of inches long. My cramping is, for the most part, going away.

The bad thing is that I've started getting very severe pains in my lower abdomen in a new spot, and it radiates down into my thigh, and it just drives me up the wall.
I'm on 150 mg a day of Imuran now, but it's still too early to tell if it's working, since I've only been on the full dose for a week or two. I also have to visit the lab to get bloodwork done weekly.

I went to see Dr. Kaplan about the abdominal pain, and he thinks I'm having some more severe inflammation in the area. Like I said earlier, he told me it was a bit too early to say whether the Imuran was a failure, but he did lay out a couple of options for me:

Option A: Go back on a short course of Prednisone, because we know I respond well to it, so I don't feel like crap while we wait for the Imuran to possibly start working. If it fails, then start Remicade or Humira, and if those fail, surgery or experimental therapy. The downfalls to this option are the fact that the side effects of taking Prednisone for a long time are pretty crappy, like losing bone density, for example (I've basically been on Prednisone on and off for a year and a half or so now). Also, Remicade and Humira are more likely to work well (and actually HEAL damaged mucosa- which would be absolutely awesome, no other meds really cause that to happen) if you start treatment early, rather than waiting until the problem becomes more severe, so waiting for Imuran may decrease my odds of having success with Remicade/Humira if I need to take either of those.

Option B: Go straight to Remicade or Humira, and failing that, surgery/experimental therapy. The downfall to this is basically cost. Remicade and Humira are both really, really expensive, and Imuran isn't so bad comparatively, so if we give up on it now, we may be giving up on something cheaper that *may* still work for me. Also, Remicade/Humira both have scary side effects, though they're sort of rare, such as lymphoma or a lupus-like syndrome. (My family's cancer history does make the lymphoma risk something to consider.)

So... that sucks, basically. Mom's out of town for a while, so I didn't really feel comfortable making the choice to go on such expensive medications without her opinion, since she's the one footing the bill if it's not all covered by her insurance. (We're looking at around $30,000 a year for meds here with no insurance coverage, and they may not be covered- don't even get me started on how scary that is for my financial future once I'm on my own to pay for these sorts of things, should I need to take them!!)

So, I've got an abdominal ultrasound booked to check out those cramps, and another appointment with Dr. Kaplan when Mom gets back, to go over these options with her there. Until then, he's started me on the Prednisone, because it would just suck to wait another two weeks with these pains, and because he wants to see if it's responsive to it (if it's not, that would indicate a more serious inflammation, and I'd have to have another colonoscopy to check it out).

That's basically it for this update- Dr. Kaplan had a new baby boy a month ago, so he seemed a bit tired, plus there was a fire drill right before my appointment so everyone had to evacuate the building- just minor chaos.

Here's a couple of random pictures:

Here's a pretty recent picture of me; the moonface from my prednisone has faded away a bit here now (but it'll be back I'm sure...)-


And this is my pretty new pill container- I had one with 4 compartments for each day and it was huge and annoying, this one I can just chuck into my purse. But it's verrry full with all my pills for one day...

Update

Hey there,

Well, I've been on Imuran for a while now, and while the prednisone took care of symptoms at first, I'm now down to 10 mg a day of it, and have been experiencing some abdominal pain again. Bleh. But apparently the Imuran takes a while to kick in, so who knows where that's going? On the plus side, I've gained back about 20 pounds, and am feeling a bit healthier overall.

Here's some pics- I was comparing how my body's changed and found it really weird to see the differences!!

Here's a VERY old picture of me- probably about, oh, 4 years old, when I weighed my most.

Then me in Uruguay a little while after the last pic:
Then I got sick, and here's a picture from Summer 2007 (about 60 lbs lighter than the previous pic):
And finally, a picture from last month, showing my oh-so-lovely moonface (thank you, prednisone!):

Intriguing....