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.) :)
Saturday, February 23, 2008
Wednesday, February 20, 2008
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
-Leanne
Tuesday, February 19, 2008
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!
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!
Friday, February 15, 2008
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
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
Subscribe to:
Posts (Atom)