Wednesday, March 18, 2009
Monday, August 25, 2008
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
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
Monday, June 16, 2008
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!!!
Friday, June 6, 2008
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!).
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)!
Tuesday, June 3, 2008
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!):
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!):
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