August update

Hi everyone!!

Just thought I should update my situation of late, and make a shout out to any of the med students from today's lecture, if any of you check out my blog :P

I'm doing pretty well after surgery! I still can't lift anything really heavy without it feeling like it's kind of pulling at my stomach muscles, but I suppose that's just something I'll have to get used to. My energy level is really good, and I haven't really had too much recurrence of my symptoms so far. I get the occasional pain, but Dr Kaplan says that's likely because they cut through nerves for my surgery (though he'll know for sure when I have my colonoscopy on Nov. 25). I'm still on Imuran and it seems to be working okay!

Also, Kyle and I got engaged in June, and are getting married in November- woot! So that colonoscopy will be about two weeks after we get married, and a week after the honeymoon, lol... what a way to break in my new hubby to the world of Crohn's.

In other news, Dr. Kaplan asked me to speak at a lecture for his 1st year med students, which was today. The class was pretty big, I'm terrible at guessing numbers but I'm gonna say 100-150 students. It was lots of fun actually, me and another lady named Tammy got to tell about our experiences with Crohn's (with mics and being videotaped and broadcast to an auxiliary room even), and were asked lots of questions by the students. It was a lot of fun- even though it was a bit embarrassing to talk about these things with that many strangers :P

I had a quick appointment afterwards with Dr Kaplan, in a cafeteria of all places, since he didn't want to make me come up again next week if I didn't have to. So I'm just staying on Imuran and waiting for my colonoscopy in a couple of months, and that's about it! :)

Leanne

Recovery

So, recovery is really, really boring... I've been stuck at home and it's been about 5 weeks since my surgery, and things have healed up pretty well, as you can see from the picture! I'm sure when the scars fade you won't even be able to see them. I'm ready to go back to work and school though, I feel great and I'm bored out of my mind!!!

More pictures!

Okay so I'm just really bored today... here are more old pictures documenting this wonderful world of Crohn's! This picture actually really scares me now when I look at it. This is from August '07 when Kyle and I went on a hike, and when I weighed about 115 lbs. I can't believe how emaciated I got- no wonder some of my coworkers wondered if I was developing an eating disorder!
This one is in Feb. '07. If you look kinda carefully, you can see four reddish bumps in a row on my shin- this is erythema nodosa. It's an inflammation of the fat cells in the skin, so I understand, and is one of the systemic symptoms of Crohn's. These ones all popped up at the same time on a homegroup trip after I got out of a really, really hot hottub, and took a month or so to go away.
This one is from December '06, and it shows my swollen and painful foot and ankle. This was the very first sign something was seriously not right with my health, and started the whole process of diagnosis.
And just for comparison's sake, another really old ugly picture of me to prove I used to be a lot bigger!! This picture's from summer '05. Some of my newer coworkers don't believe me that I used to weigh 180 lbs- there's the proof! I can't blame them though, if they've only known me when I've been ill (based on that scary first picture up there!).

Just a little diagram...

Just another little post for the curious! During my surgery, I had my cecum, terminal ileum, and appendix removed- those are the parts of the intestine within the little circle there. The appendix is the little dangly thing, the cecum is the part of the large intestine at the very end, and the terminal ileum is the part of the small intestine that connects to the large intestine.

Incisions

I just thought I'd post a quick picture here for anyone who's curious to see what my incisions look like now! I really wish I'd taken a picture when I first took off the dressings, but oh well. As you can see, my tummy is still a little puffy (still on prednisone after all, and it's a bit swollen from surgery still too). I had three incisions- the main one (on my bellybutton) is where they pulled out the diseased intestine, so it was really bruised because the skin got stretched a lot. The bruising is still fading now.

The second incision visible, on the right, was one of the two little incisions where Dr. Buie inserted laparoscopic tools. I have another one that's only a couple cm long in a spot too low to post pictures of, and it's barely even visible now.

It really is a testament to Dr. Buie's skill that these incisions are all I came out of surgery with- I've looked around Crohn's online communities and found all these horrible pictures of giant open surgery incisions and laparoscopic surgeries with way, way bigger incisions, and I have to say, I think mine are possibly the best I've seen compared to other people who have had similar surgeries. My family doctor and Dr. Kaplan were all really excited about it, and I'm sure they've seen lots of scars and stuff, so yay for Dr. Buie! I'm sure in a couple of months you won't be able to tell I had surgery (although my belly button will be a little wonkier than before)!

Longer update...

So, now that I have a bit of time, I'll write out more of what happened with today's doctor appointment etc! Recovery has been going very well for me; things still feel a little strange if i move or twist my torso too fast, and I still have a bit of pain at times, but otherwise I feel great! I've barely felt any of my Crohn's symptoms at all. In fact, I'd even say that besides the tiredness I'm still dealing with, I haven't felt this good in a couple of years now. *knocks on wood*

My sutures are super tiny now- I expect they'll probably heal up without a ton of bad scarring too, as long as I don't poke at them or anything.

Today I had my followup with Dr. Kaplan, where we got some good news! Kyle and Mom came along because we were expecting that I'd be put on Remicade, and that decision would potentially really affect Kyle as well (in terms of the risks of bad side effects to me, and financially in the future as well). However, Dr. Kaplan didn't feel that I needed to go on Remicade after all, so that's great news!

He told me that the surgery had basically eliminated the really actively diseased parts of my small intestine, so essentially, right now I'm pretty much Crohn's-free. That doesn't mean I'm cured by any means- the likelihood of it coming back is pretty darn high, and because of the severity of my disease at onset and my age and various other risk factors, the chances of me needing another surgery at some point are also high. Therefore, we decided it would be best to take preventative medications with the goal of preventing or putting off this second surgery. My maintenance therapy is going to consist of taking 150 mg of Imuran daily, and as I've mentioned in previous entries, it does take a few months to really kick in too. I'm getting weaned off the prednisone, which is good cuz I'd like to have my natural face shape back instead of this puffy chin I have now.

So, this is all good news, but I'm still not totally good as new- they did remove quite a bit of tissue, and since they removed my ileocecal valve, I may experience troubles absorbing fluids during digestion. I may also need to do things like B12 shots, since the terminal ileum is where B12 is absorbed, and I no longer have one. That all depends on what my bloodwork shows. But overall, this is really no big deal!

Dr Kaplan said that I'm pretty much in remission now, which is fantastic. So the game plan is Imuran every day, bloodwork every week to check on things as long as I'm on Imuran, and if things start to flare up and get bad again, then we may discuss Remicade/Humira, but for now we don't need to worry about it. I have to see him in 3 months just quickly to make sure the Imuran is working okay for me, and in 6 months I'll have a colonoscopy to check stuff out, because apparently with Crohn's it can start to come back without any external symptoms showing, and they'd want to catch it early this time, rather than have to fight a losing battle resulting in surgery like this time (since I didn't get treatment until things were so far along).

He also was supportive of me seeing a naturopath, which I know will encourage a lot of people who have been trying to get me to see one. Kyle asked what things I can do to help myself stay in remission in conjunction with medications, and Dr Kaplan told me to limit my refined sugars and high fat foods (darn), and that there'd be absolutely no harm in seeing a naturopath. He pretty much just said "as long as you don't rely ONLY on your naturopath as a substitute for medical care, it's fine by me", since apparently he's had very sick patients deny treatment before in preference for natural stuff with poorer results. He even killed some of my skepticism about certain natural treatments for Crohn's, such as drinking aloe juice- he actually said there has been some marginal evidence in support of aloe as a natural treatment! So I guess I should bite my tongue! So, there we go! I'll be looking into seeing a naturopath, and will be watching my diet and taking Imuran. Definately not so bad! :)

Here's a recent pic of me (cuz the last one I posted here had my really bad moonface and now I have a cute haircut to show off too!):

Quick update!

I can't write much here, as I'm about to head off to Kyle's Grandmother's birthday, but I just wanted to update everyone briefly- I saw Dr. Kaplan today for a followup, and it looks like I'm not gonna be going on Remicade after all! Yay!

He said my incisions look great, and that I'm really lucky to have had a surgeon with the skill to do my surgery laparoscopically. He said that while I do still have Crohn's, the diseased parts are essentially cut out, so we're going to take a preventative path with treatment and put me back on Imuran. I'm also going to be tapering off the prednisone over the next couple weeks.

I'm feeling great, and everyone says I look healthy- I haven't felt any of my usual Crohn's symptoms since the surgery, so it looks like I'm probably successfully in remission now! :)

But I must run, so thanks for all the well-wishes everyone! I'll add more when I have time!

Home at last!

Well, today they discharged me at noon, so I came home from the hospital today! Hooray!!

I got sent home with a bunch of prescriptions- calcium, vitamin d, potassium, iron, percocet, and prednisone- and a couple of appointments for follow-up. I'll be staying on 20 mg of prednisone a day until I see Dr. Kaplan in 2 weeks, where we'll discuss going on Remicade/Humira.

I'm feeling okay- it's a little disorienting being out of the hospital, I'm kinda used to having stuff set to the clock so it was weird not to have a little meal served at the same times, etc. But I'm definately not going to miss having meds and vitals all night when I go to bed!!

I've been told to take a few weeks off of work, and to take it easy and relax and recover, so I don't have much of anything planned for the next few weeks. I'm looking forward to just taking some time for me and not having to stress about school and work on top of dealing with sickness!

I'll keep blogging of course, but now that I'm at home, there won't be as frequent updates, since significantly less will be happening. :) And that's a good thing!!

Thanks to everyone for all you've done, and to everyone who's checked out the blog- it's turned out to be a really good way to get info out to everyone!

Almost home!

Hey everyone!

So I spoke with my surgeon this morning, and he said I seem to be healing quite well, though my hemoglobin counts remain low. They detached me from the saline drip, and I'm getting my prednisone orally again, so I only have my IV every 6 or so hours for antibiotics, and should be getting oral antibiotics tomorrow. I can move around pretty well, I just am slow and can't really bend my tummy too well yet. They got rid of my morphine drip, so I actually experienced my first bits of pain during this whole thing, since the percocet/tylenol stuff I take now takes a little bit to kick in when I take it. But it's not so bad- I just have to be patient for half an hour or so, or take the meds a little more promptly when I start to ache.

I'm on a post surgical soft foods diet, which consists of lovely little entrees like pureed minestrone soup... so with my nurse's permission I snuck down to the cafeteria to get snacks like hardboiled eggs and cheese and pasta instead of the gross hospital food. I should be on normal food tomorrow.

And the million dollar question now is when am I going home?? I talked to my surgeon today and he said I may be going home as early as tomorrow, but most definately by Saturday morning in time for Rent. It all depends on how I handle my food today, and thus far I'm feeling just fine, so hopefully this will bode well for getting out soon!

So if you were planning on coming to visit (I know a few people said they were coming Friday), please do call first to make sure I haven't been discharged! You can call/text my cell, or call the hospital admitting department.

But visiting hours are over and mom has to go, so I'd better return her laptop here!

Night everyone, and thanks for all the gifts and visits and cards and well-wishes and prayers!!

Leanne

Hi!

So today was just another day of recovery basically. I got put on a clear fluid diet, so broth, popsicles and juice are the new parts of my meals. I also got my catheter removed, which is awesome.

I had quite a few visitors today- Steph, Gene, Sam, Maeghan and Poppa- so I'm pretty tired now! It's still really hard to do much, my shower this morning wiped me out pretty badly. My hemoglobin levels are still a bit low, but I don't think they're going to need to give me a transfusion or anything. So I'm still just taking things easy!

I also finally got to speak to my surgeon, which was nice. He explained that I do have quite a bit of Crohn's everywhere in my small intestine, so while the surgery removed the worst, I do still have active disease and need to continue medical treatment once I'm out of here- so I'll probably still be on Remicade.

I know some people are really nervous about this decision, but I feel it's for the best, really. It's not cheap, but a lot of people manage to find the money. I was thinking I may also blend this with some naturopathic treatment, since a lot of people aren't too keen on me being kept on drugs. I know some think that doctors just try to throw experimental drugs at the symptoms and don't take a more wholistic approach, but I don't feel like Dr. Kaplan is just tryin g to give a quick fix.

Anyhoo, I shall keep you all updated, Dr. Buie said I could probably be out on Saturday in time to go see Rent! Text me before you visit just in case I've gone somewhere!

-Leanne

Recovering nicely!

Hey everyone!

Well, as Kyle posted, I did manage to get in for surgery Friday night. They put me under and next thing I knew, I was awake in the recovery room, just DYING to have a drink of water or ice chips or something, but was told I couldn't have anything by mouth still.

Apparently, along with the intestine and cyst they planned to remove, they also drained the abcesses, and performed three strictureplasties. As I understand, this is a pretty simple procedure. They make a slit along the length of the intestine, then bunch it together and sew it shut, sort of like sewing a puffed sleeve, as my mom put it. This results in the intestine being a bit shorter but wider at the strictured parts. It's good to know they really take a good look while you're under to make sure they're not missing any other problems! I have three little incisions, one in my bellybutton (the biggest one), one just below it, and another on my left hip.

At some point they wheeled me up to my room on the 10th floor, where they kept me under observation and I mostly just slept. They let me swab my mouth with club soda and water, but still nothing else. I just slept lots, aided by the morphine drip. I wasn't allowed much- 1 ml every 6 minutes at the most, and it would deliver this dosage when I press a little button attached to my gown.

Saturday was mostly a blur, and I don't really remember much of it.

Sunday I felt much more lucid, though still a little weird on the morphine. Fr Larry and Myra came to visit and Fr Larry joked that they't cut off my feet! Meanie...

So today I still can't really eat, though they just gave me a popsicle, and let me tell you, pink popsicles have never tasted so yummy! 5 days of tasting nothing but the inside of your own sick mouth is not fun.

I'm not feeling too much pain. My sutures and stuff ache a bit more today cuz they're making me sit up in bed which is making stuff move around. I suppose this is pretty good for just a couple days after surgery though! Hopefully tomorrow they'll let me have broth or ice cream or something. I'm also not using my morphine nearly so much today, and they make me get up for lots of walks around.

Feel free to come visit- it's usually best to come in the afternoon, since I'm most alert then and usually all the doctors have come and gone by then. I"m on the 10th floor in the surgical observation unit, room 1069, it's all the way at the end of the hall. This floor as a patient lounge too, so if I"m up to it, we can go hang out in the lounge as well as in my room!

Thanks for all the well-wishes, and I'm on my road to recovery! Thank goodness all this is nearly over!!

-Leanne

The Surgery is Finally Done

Glory to God, the surgery is finally done.

After waiting the evening Leanne phoned me at about 9:00 last night as she was going in. The operation didn't start until around 10:00 or so and took a few hours.

I received word last night, around 2:30 am, that it was completed successfully and she's doing fairly well. I'm not exactly sure how lucid she is, as she's on a morphine drip, I'll find out today I guess.

So they took the piece of her intestine, about 10 cm I understand, with the appendix attached. They found 3 more strictures which they expanded, kind of like a balloon I guess, that's how it was described to me.

She also had the cyst on her ovary removed and, thank God, they didn't have to damage the ovary to remove it.

I understand tomorrow will probably be the most difficult day, as that's when the pain will be most intense.

She's still in the Foothills, but has moved now to the 10th floor, room 1071, bed 2. She told me that she didn't really want visitors the first day, I doubt she's going to be good company anyhow. But please do drop by sometime a bit later if you are able. She would really appreciate it.

You can give her a call on her cell, 650-3205, as she usually has it on her.

Thank you all for your support, love, and prayers. She has been very encouraged by them all.

I will update as she requests me to.

Kyle

*sigh*

Well, they sorta cancelled my surgery. The surgeon was called away to the Alberta Children's Hospital for emergency surgery, so I'm on the waitlist again for today. I guess it probably depends on how long the emergency takes, and how many people are ahead of me or whatever, but I'm not exactly feeling hopeful about getting in today. It's hard to believe I'll actually get in when even a confirmed time and date doesn't cut it.

So, I guess I have to think about the possibility of being stuck here waiting more over the long weekend, so if the surgeon doesn't work weekends, Tuesday will be his first day back, which will bring me to a full two weeks of being in the hospital waiting for surgery.

I still can't eat or drink anything until the doctors take away the NPO order, so I just hope I'm not gonna be stuck on NPO all weekend if I do have to wait.

So... prayers that I get in today would be much appreciated, I really don't know how much more waiting and getting my hopes up and getting disappointed I can take.

As always, I'll post news when it comes, if I get the chance to.

-Leanne

[Update: It seems I'm at the bottom of the waitlist, so nobody seems very optimistic that I'll get in today. Which means I won't have any hope until Tuesday, if then. So I've got day passes, and I'm most definately coming out of here as much as possible over the long weekend, or I'll simply go insane. Of course, I'll update should something change.]

Finally!

So I finally have a date and time for my surgery! I'm going in tomorrow (Friday) at 2 pm.

A few people have asked when I want visitors after the surgery- maybe not Friday or Saturday, but I'm sure by Sunday I'll be up to visiting! I'll be in the hospital roughly a week or so after surgery to recover, and may be stuck to my room for a lot of it, so visitors are definately welcome. I may return back to my current bed on Unit 62, but I could also be moved to the surgical unit, and I'm not sure where that is, so I'll get Kyle to post on here where I am for visiting.

I'm feeling a little nervous now- I talked with my surgeon Dr. Buie and other general surgery people about the procedure, and it seems that apparently there is always the risk that if they can't reconnect the parts of the bowel successfully, I may need an ostomy, either temporarily or permanently. So please, please pray that I don't need an ostomy cuz that would just be sucky!!

It's been a little over a week now, and being in the hospital has really taught me a few things...

a) to be really, really appreciative of my health and mobility and self-sufficiency, even though I do have Crohn's. There are certainly worse things- Eugene (a friend from church who is in a coma) comes to mind, as do some of my very sick or very downtrodden roommates here. I've seen three alcoholics go through and two homeless guys, and it's really quite sad to hear them talking with social workers. I may be stuck in hospital, but at least I can still take care of myself while I'm here for the most part (at least until my surgery).

b) our health system has its perks and downfalls. The good thing is that healthcare is equally available to all- as one GI put it, he doesn't have to refuse anyone treatment due to lack of insurance, and all people, prime minister or homeless man, are supposed to get the same care. The really, really big downfall though? The system is so overloaded that everyone ends up waiting a very long time for care. I've been taking up a valuable hospital bed all week, feeling relatively healthy, because it's so hard to get OR time and so hard to get a bed that they didn't want to send me home while waiting in case the two didn't line up. Most of my roommates have been admitted through the ER, and many of them waited two or three days for their beds. The nurses, though they're all pretty great and wonderful people, are so overloaded with way too much work.

c) the biggest lesson I've learned though? Be your own health advocate! Take notes on what doctors say, get their names, know what meds you're on and when you're supposed to get them. The nurses are super busy and sometimes forget things, so it's good to be able to know when you should be getting time-sensitive meds and how much of them. Don't be afraid to make requests, too.

Well... that's about it for life lessons from Leanne's hospital stay, lol... tomorrow I have surgery so I'm sure Kyle will post an update on how it went!

Pray for me and wish me luck!!

-Leanne

Quick update...

Just wanted to let everyone know that I still don't know my surgery date. I saw two GIs today who both said they didn't know and couldn't really guess, but one said I'd probably find out first thing in the morning before any doctors visit when they don't give me breakfast. That had me all excited this morning actually, since i didn't get food for brekkie, but it turned out they just mixed up a tray- here I was thinking I was NPO for surgery! (NPO= non par ora or something... nothing by the mouth)

The one bright spot is that if I have to wait over the weekend, I found out I have a standing doctor's order for day passes, so I actually can leave the hospital anytime, I just have to let the nurses know ahead of time, and be back for meds. If i have to wait more than 5 days, they may switch me to oral antibiotics too, which means I'll only get IV meds twice a day rather than 4 times, so more free time to leave, as I can take my oral ones with me!

Anyway I'd better be nice and share the interwebs, there's a lineup! Keep checking for updates!

-Leanne

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....

On the lighter side...

Here's a hilarious forward I saw on Facebook: (Be warned, this is pretty heavy on the poop jokes, so if you hate that sort of stuff, you may want to skip this one!)

You know you have Ulcerative Colitis (UC) or Crohn's when...

-When you travel, your meds have their own suitcase.
-At the super bowl party, you won the prize for ' most wicked fart' and you were just setting out the dip.
-You were thrilled to have had 'only' 5 bm's today.
-You carry a spare pair of undies with you everywhere you go
-You've stopped to crap on the side of the road with your inlaws in the car
-You wonder how much crap can come out of one person!
-You're happy when you have a big loud burp because you're thankful it's not coming out the other end!
-You know every bathroom where you work, and everyone knows where you are headed when you say...."I'll be right back" with a funny look on your face.
-Your colon gurgles and its so loud that everyone around you asks if you are hungry.
-Truck stop bathrooms don't even phase you.
-You know where the bathroom is everywhere you go
-You have your GI on speed dial
-When you carry your own toilet paper.
-When you bring your own food for just you to a holiday party
-When your friends keep asking you "Can you eat this?"
-When you look at every ingredient on everything you eat
-When you're always the designated driver
-When you keep all your books in the bathroom next to the toilet
-When you think you should buy stock in wet wipes
-When you order three months of meds and they come in a box so big your neighbors think you got a new TV.
-You are the youngest patient in your Gi's office.
-Your GP runs because he thinks you are a hypochondriac. He then gives you a free flu shot because he is tired of referrals.
-You regularly stock the bathroom with extra rolls of Toilet paper
-You are better at describing the intricacies of poo than wine.
-You wonder if that's really going to be a fart.
-You can say, "It's not the colonoscopy that's bad, it's the PREP!"
-You have read every magazine or paper in your bathroom so many times, that you start reading the ingredient lists on toothpaste, gel, shampoo and anything else you can get your hands on without getting off the toilet........
-You have a standard answer when anyone asks, "What's UC?"
-You go to pick up the *evil* Prep at the pharmacy and the pharmacist, who is about your age (I'm 25), says, "I'm sorry."
-You can tell your parents that a colonoscopy isn't a big deal
-You are on a first name basis with your GI.
-You're thankful big purses are in style so you can carry your pill organizer with you.
-When you get SICK of people asking you "How are you feeling?".
-You undo your belt and zipper before you even enter the bathroom.
-You go house or apartment hunting and you are only interested in the number and location of bathrooms.
-You have a pill count contest with your grandmother
-When seeing blood is no longer a cause for concern.
-You have used the bathroom in every McDonalds, gas station and fast food restaurant in a 10 mile radius of your house
-You can talk about poop all day and not flinch
-You don't go out of the house for long periods of time w/out a massive bottle of Imodium just in case
-Your friends ask you in hushed voices how that stomach thing is going
-In your 1 bed 1 bath home, you always win the race to the bathroom, no matter what.
-People who manage a glimpse into your purse give you strange looks, assuming you're addicted to pills, close friends make sure you remember those pills.
-Everyone is your GI's office knows your name without looking on the chart or the sign in sheet.
-The Lab techs tell you that they are going to name their next lab machine in honor of their best customer (Me).
-You leave the Pharmacy with a HUGE bag of enemas.
-You call your insurance company and their Customer service rep pauses....and then says that you've got a lot of claims so this might take a while.
- Your Morning workout is a Sprint to the bathroom
-You have 3 different sizes of the same clothes.

(For those who don't know, ulcerative colitis is another inflammatory bowel disease much like Crohn's, so we all go through very similar things and similar treatments.) :)

Ultrasound Update

Hey everyone! Just a quick update here- I went for my ultrasound today, and all went well. They told me to expect to hear from my doctor with the results in a week or so, so I guess they didn't find anything too serious- which is great news! So I suppose I'll be hearing from Dr. Foss or Dr. Kaplan at some point about the results, but nothing pressing to worry about, it seems.

-Leanne

Here comes the Imuran!

Hey everyone,

Thanks for all the good feedback about the blog- I think I'll keep it up, since it seems to be a good way to let people know what's going on!

Today I had an appointment with Dr. Kaplan at the UCMC GI clinic at Foothills Hospital. It seems he's likely going to be my primary gastroenterologist now, or perhaps work as a team with Dr. Price, which is great- I really like Dr. Kaplan. He's young, and he's very involved in research and is very up to speed with new treatments, which is great, plus he's got a much better bedside manner- he even gave me his ucalgary.ca e-mail should I need to ask him any questions. (Mom likes him better too!)

So, I don't have to go on Remicade (yay!), but Dr. Kaplan did start me on Imuran. Imuran is a drug that surpresses your immune system- it's used for all sorts of things, like preventing transplant rejection and treating rheumatoid arthritis, for example.

Here's how he explained this to me: basically, the thought is that there's a mycobacterium in my colon that my body is attacking (an autoimmune issue basically), and my immune system is over-reacting to this bacteria. Taking Imuran will essentially make my immune system depressed, which will help stop it from attacking my own guts, basically.

So if you're around me and you're sick, pretty please let me know- I gotta be really careful not to get any cuts or bruises, and to wash my hands very frequently, as my body will have a harder time fighting off infection on Imuran. It'll take a couple of months before I feel anything from the Imuran, so I'm still taking the prednisone- although I won't be on it as long as originally thought. It all depends on how the Imuran works out, but Dr. Kaplan doesn't want me on it forever, as there's a lot of nasty side effects prednisone can cause.

So that's basically the gist of it for today! Tomorrow I go for my ultrasound to find out what's up with this potential cyst/abscess, and I'm feeling pretty positive about my new GI doctor. The best thing is that he actually supports me being my own advocate, and doesn't mind me doing my own research and informing myself about Crohn's. That and this hopefully means I'll be rid of that bad secretary from now on!

First Post- Background

Hey everyone,

My name is Leanne, if you don't know me, and I've been diagnosed with Crohn's in the last year. I figured I'd start up a blog, since my doctors have said keeping a journal is a good plan, plus people always want to know what's going on with my treatment and progress, so I thought this might be a good way to fill people in. (Plus Facebook notes aren't as fun!) I promise I'll try to keep the gross details to a minimum. :)

Here's my story thus far:

For the past few years, I've had various issues with digestion, and we just chalked it up to some kind of dietary sensitivity and didn't really do much about it. However, in December '06, I woke up to find my ankle severely swollen and barely able to move it without a lot of pain. I went to a walk-in clinic and had x-rays done, which showed no broken bones, so the doctor just assumed it was inflammation of some kind, and gave me naproxen to take. The naproxen didn't really do anything except give me stomachaches, and the swelling spread to most of my other major joints. Around this time my digestive issues went full-strength, and I was having to use the washroom up to 12 times a day on the worst days.

I went to visit my family doctor, Dr. Foss, and she ordered lab tests for all sorts of things- lupus, gout, celiac disease, etc, and everything came back fairly normal except for the amount of acid in my urine, which led her to believe it may have been gout causing the joint pain (which was so bad that I couldn't have my bedsheets resting on the inflamed joints). I continued naproxen and was told to hydrate myself and take iron, as I was also pretty anemic. I guess we still hadn't realised all of my issues were likely connected.

Suffice it to say this didn't help- eventually the swelling just went away mostly, and instead I started getting these large lumps under my skin on my shins and forearms, and sometimes on my wrists, that are called erythema nodosa. I'd had them before back in '04, and the dermatologist had assumed it was an allergic reaction to a Twinrix vaccination. (In retrospect, this was likely the Crohn's in a mild flareup even then.) I had started to lose a lot of weight as well- in Septemberish '06 I was around 170-180 lbs, and by May I had dropped down to 140.

I went researching online (yeah yeah I know, doctors hate people who self-diagnose), and found that my symptoms really seemed to resemble Crohn's Disease, something we hadn't discussed yet. Mom and I were convinced this was the right path to look down for diagnosis, so in May I began to keep a journal of all my symptoms and what I was eating, to see if there were any patterns established. I went back to Dr. Foss and she agreed that Crohns was something to look into, and referred me to Dr. Price, a gastroenterologist.

So finally the ball was rolling! She also ordered an ultrasound for me, which didn't show anything abnormal except a small spot on my liver that they said was common and not to worry about. In June I saw Dr. Price, who, after interviewing me, looking at my journal, and giving me a physical exam, and told me he thought it was very likely I did have Crohn's. At this point my weight was hovering around 115-120 lbs, and my friends and family were starting to get really worried.

So it was good to have a potential diagnosis! I was told by the secretary that I was on a waitlist for a CT scan and a colonoscopy, as well as all sorts of super-fun lab tests (not) and was told to eat very little fibre, and to eat a soft diet.

Meanwhile, my weight continued to fluctuate around 115, and I was losing hair and starting to have sharp abdominal pains quite frequently, so I was pretty anxious to get some treatment started. I went for my CT scan in October, which went very smoothly. Dr. Price phoned me back to tell me about the results, saying I had some narrowing of my colon so I couldn't eat things like corn or seeds that could cause blockage. He asked if I'd had my colonoscopy yet, and was absolutely shocked to find out that I hadn't. Turns out the secretary messed up bad- I was supposed to leave that first appointment in July with an appointment for the colonoscopy- there is no wait list. So I'd been waiting around for nothing. Dr. Price put me on a short round of Prednisone- starting with 50 mg a day and tapering for 7 weeks to 0- and a maintenance dosage of Pentasa (working my way up to 3000 mg a day), and told me to call his secretary's line to book that colonoscopy ASAP. I got it booked for February, and was extraordinarily pissed off that I'd had to wait so long when it should have been done in July or August.

The prednisone was... well... interesting. My Crohns symptoms almost totally went away- I was feeling great- except for some really bizarre side effects! At one point, I had such bad water retention that I looked incredibly pregnant even when standing, and had to start wearing my size 14 clothes again because my belly was so swollen (I had dropped down to a size 4 before this)! I also had very, very vivid and weird waking dreams at night- I'd wake several times and night and think weird stuff like that there were bugs all over my ceiling, and turn on the lights to find nothing was going on. It was bizarre. But I had a ton of energy, and ate so much that at times I felt like a garbage disposal. My hair starting growing back, which was great, and I began to fill out a bit, going back up to 140 lbs then evening out around 130. I finished the pred about halfway through December.

Unfortunately, once I was off the pred, all my symptoms came rushing back, and (bad me, I know) I stopped taking the pentasa a month later because I felt it wasn't working. I tried to call Dr. Price to see if I should try the pred again, but the secretary told me that I couldn't make an appointment or talk to him without a referral (wha???). I tried explaining that I was a current patient seeing him in Feb. for a colonoscopy and just coming off prednisone that he put me on, but to no avail- she just took my number and probably threw it away, as I never heard from Dr. Price. Not a fan of that secretary to say the least.

So I basically just sucked up my symptoms for the time being, knowing that I'd be seeing him in a few weeks for my colonoscopy. And BOY that was that fun- the day before Valentine's Day, too. The prep was terrible- I had to drink 4 litres of this salty stuff called Golytely that tasted like old sweat to flush out my colon. A tip for anyone else reading this who's going in for a colonoscopy- add some crystal light powder to the Golytley, then it just tastes like juice that someone's put salt in- and drink it as cold as possible. Anyway, it was a rough evening, and I had pretty bad nausea for part of it. The next morning I was all cleaned out, and went for my appointment at the hospital- piece of cake, I was conked out for the whole thing. Turns out Dr. Price was so worried about me based just on my appearance and an abdominal palpatation (I think it's called that- he just feels your abdomen), that he said I might be admitted to the hospital to recieve TPN via IV (essentially feeding me intravenously to get my weight back up and give me all my missing nutrients). Luckily that didn't happen, but he did say I had "a lot of Crohns" in my colon, and that things were pretty bad at this point. He put me back on the prednisone- starting again at 50 mg/day, tapering down to 5 mg/day for several months, and no Pentasa this time- and referred me to a Dr. Kaplan on Tuesday to see about getting Remicade infusions (oooh, here come the hardcore drugs now!). He also asked if anyone had told me that they saw what may be a dermoid ovarian cyst on my CT scan back in October- and of course, no, nobody told me that. Thanks. So I was given a really yummy scone and sent on my way home and told to really pay attention to taking meds and stuff.

I phoned Dr. Foss to book an appointment to get an ultrasound booked for that cyst, and it turned out she hadn't been informed about ANYTHING that had happened since she referred me to him! She wasn't even aware of my diagnosis of Crohn's! Yikes... I really need to figure out who's dropping the ball here, cuz I don't think I'm supposed to be filling out my own records with her. So they ordered my CT results for her, and she said she was concerned it may be a pelvic abcess, so I'm going in for an urgent pelvic ultrasound on Wednesday, and meeting with her when she comes back from vacation in early March to fill her in on all this stuff about my Crohn's.

So... I think that's it! Sorry for the novel, it's been a VERY long year and a bit here. And Dr. Price's secretary needs to be fired.

Anyhoo, further updates will come as things happen, and I promise they won't be this long. :)

Thanks for reading!
-Leanne