Apology

I know it's been ages since I last posted, and I don't really have an excuse. Except that I've been exhausted.

My typical summer week looks like this:

Monday - volunteer at the psycholinguistics lab, grocery shopping, sign language class
Tuesday - work, pilates
Wednesday - volunteer at the speech and language class, yoga (sometimes clubbing)
Thursday - work, swim
Friday - volunteer at the speech pathologist's

I am drained. Even though I can usually sleep in a bit on my work days I just don't have any energy.

I had bloodwork done last week (my every 3 month check-in) and I got the results today. My B12 is low . . . which is funny because I take a B-Complex supplement every day. Maybe it's a malabsorption issue? Maybe it's something ridiculously scary and sinister going on in my body.

Me and my mom brainstormed a quick plan - start taking the 1000mcg B12 vitamins that she accidentally bought (instead of 100mcg) wait a week or two, get bloodwork done again and see my doctor. If my B12 levels don't go up again, we'll probably consider shots.

Now since I'm about to fall asleep at my computer right now, I'm going to call it a night. And try to find a spot in my busy week for blogging!

Rest, Relax and Eat Right

All things I didn't do this past weekend. I decided to push myself a little bit and volunteer as staff for a 4-day 3-night leadership conference for high school kids. Now this may sound fairly innocuous, but this is where you are wrong.

The day begins at 7:30 for the delegates when we wake them up. That means that staff are awake as early as 5:00 making pancakes, eggs and bacon for breakfast in the residence kitchens. We are lucky to get three hours of sleep because by the time the delegates get into bed and the staff meeting finishes up it's usually around 3:00am.

The days are absolutely grueling with constant cheering, dancing running all over the place with a little bit of down time for motivational speakers and sessions on leadership.

And the food . . . delegates eat first always, so if there isn't enough the staff don't eat. Or we eat things like burgers and chicken wings and pizza, pizza, pizza. Candy and cake all hours of the day, trying to replace sleep with food.

I know this sounds really really awful, but I absolutely LOVED IT!! My body was up to the demands and my Crohn's didn't get in the way much at all. It definitely let me know near the end that it wasn't all that happy, but that didn't stop me from having an AMAZING time.

I guess it really proved to me that I am okay, I can still do the things I love. I'm not an invalid and I am stronger than I think I am. Now I'm going to collapse into bed and try to catch up on my sleep a little more.

Rent

"You don't want baggage
Without lifetime guarantees
You don't want to watch me die"

My friend was able to get last minute tickets to the final performance of Rent in our city on saturday. I didn't have anything else going on that night, so I said yes without a thought. I don't want to get all melodramatic here, but seeing the show:

a. made me cry
b. brought up some memories of earlier this year

A. was no surprise. I'm a crier. I cry at movies, books, tv shows, sad songs...pretty much anything with a plot. In the past, seeing the movie and the broadway show has brought tears to my eyes, so I was expecting that.

I wasn't expecting the sight of Angel in a hospital gown (similar to my old ones) and some of the lines to really hit me where it hurts. Watching the characters struggle with AIDS and still be there for each other, even when really sick or dying made me sadangrymaddepressedlonely. Why couldn't I have that too?

My illness was the catalyst for my break-up in November, and it was hard watching what I didn't have. I know Crohn's disease isn't fatal, but if people with AIDS can find love, and not be ashamed of their disease why can't I.

This musical hit a couple of nerves, and I feel like I understood it in a completely new way. Rent did amazing things for AIDS awareness, however I doubt Crohn's will ever reach that level of mainstream pop-culture.

The Hangover

Well, there is definitely one thing my intestines don't appreciate. And they always make sure to let me know the next day. Crohn's + Alcohol = not a happy tummy.

But, this is my no obligations week (after exams, before the summer job starts) so I'm not gonna let anything stop me from having an amazing time. I know you don't need alcohol to have fun, but it definitely makes things much more enjoyable.

Off to party now, this is night three of the streak. Maybe my intestines just need practise, and time to get used to the copious amount of alcohol they're dealing with.

What can I say, I'm in University!!

New Beginning

Today was my LAST EXAM!! I am finally done with second year!! This entire year has been such a rollercoaster, ups and downs in pretty much every area of my life. This term has been especially brutal with recovering from surgery, writing all of my exams from first term and just trying to get back on my feet.

I'm moving on Monday/Tuesday, and I'm going to take this as my new beginning. All of my pain, illness, hospitalizations, prednizone side effects and depression are associated with this house. I have the chance to pack up my life, move a couple of streets away and start over. This time, with a group of amazing and supportive people.

I'm going to turn over a new leaf. Continue on with this super-positive attitude. I've gotten my summer all sorted out, with three volunteer committments, a sign language class first term and two credit courses second term. I will also be working my job 17 hours per week, and setting my own hours.

This next week is going to be super busy for me, and that's exactly how I like it. Shopping, packing, partying and moving plus a couple of meetings for work.

And I recieved a fantastic piece of news this morning, which helped me go into my exam feeling super confident. In February I applied to be a volunteer counselor at Camp Oasis, a camp for kids with Crohn's and Colitis. They emailed to set up a time for an interview!! Keep your fingers crossed for me!!

Boys Beware!

This post contains things that you may not want to read, unless you are female and can sympathize.

I am currently in the middle of my period, trying to study for exams and ABSOLUTELY MISERABLE!! I have awful, awful uterus cramps, which have sent an invitation to my intestines to join in too! So I have cramps on top of cramps, and it's a really weird/painful thing when you can tell where one set of cramps stops and another starts.

The uterus cramps have also triggered some D, which means that in addition to feeling like crap, I am also running to the bathroom several times a day.

And, since I have been banned for life from Advil I can only take tylenol. Advil used to be my godsend during my period, pop 2-3 pills 4 times a day and the cramps/backache are much reduced. However, since tylenol is not a NSAID (which is actually a good thing because I'm allowed to take it) it only helps with the pain and has no effect on the cramps themselves.

I don't know why the universe has to conspire against me to make exam time the most difficult and painful it could possibly be.

I'll just keep my rice-sock hot and do my best to make it through this week without killing myself or anyone else.

Dilemma

I'm moving soon! In just over a week actually! I love my new housemates. They're fantastic and fun and most of us are involved in the same type of things at school.

The one thing I'm struggling over is: to tell or not to tell.

Living with a group of people - especially friends is a pretty intimate experience. I could try to be nonchalant about the giant medicine box, and my about to explode daily pill box - shrug it off as vitamins? I only have minor symptoms, a little bit of pain that comes and goes, so that's not going to give me away.

The only thing I'm worried about is if I do take a turn for the worse. In that case I would want to have people around me that know what's going on. Since I am at a relatively good place now, is this really a concern?

I don't want to be a drama queen, regaling them with my medical horror story. I don't want to scare them away, or make them regret asking me to move in - which I know they probably wouldn't, but I can't help worrying about people's reactions.

I think I'm just going to wait and see. Once I'm actually living there, I'll be in a much better place to make a decision.

Scandalous

Warning: the post below contains somewhat questionable decisions. Do not read unless you can refrain from judging.

The other night, I hooked up with a friend of mine. At a work party (free drinks!). It started off innocently enough earlier in the day with a bit of joking, but add in alcohol and a meddling mutual friend and we get a drunken make out session. In my office.

I can't really decide if I regret it or not. On one hand, I had fun and I think it was exactly what I needed. On the other hand, it goes against my values, and the perception I have of myself.

This year, especially post-diagnosis my self-esteem has been all over the place. It's been hard, with way too many periods of isolation due to hospital stays and the depression that resulted.

It was an ego boost, knowing that someone thinks I'm gorgeous and wants me. It really helps to off-set the "damaged goods" mindset - even though the friend is unaware of my condition.

It also helped to cement the my break-up. Even though it's been about four months, I wouldn't be able to say that I'm completely over my ex. But I think this definitely helped me start to think of moving on.

It was a bit intoxication - the high it gave me. I was all smiles the night of, and the next day. Then the doubts set in. It could very well be addictive. But this isn't a pattern of behaviour that I really want to fall into. If I have to use others to constantly boost my self-esteem then I'll never really be able to stand on my own two feet. And I'm lucky that this was a friend, someone I know and feel comfortable with. I don't want to ever end up in this kind of position with a stranger - it could end badly.

Luckily, I think our friendship is still intact, and there isn't too much awkwardness. I can't take it back, so there's no use feeling bad about it. I just have to make sure this doesn't become a habit.

Hey Canadians!

The Crohn's and Colitis Foundation of Canada is hosting a series of educational symposiums around the country! They feature a full day of speakers, touching on the latest trends of IBD. There is also a youth stream at each conference (FREE!!) I'll be there!

They are:

Edmonton (Alberta), April 17th
Halifax (Nova Scotia), April 11th
Kamloops (BC), April 17th
Ottawa-Gatineau (Ontario/Quebec), April 17th
Toronto (Ontario), April 25th

Check out CCFC & You Educational Symposiums for more information and to register.

My Support Paradox

When I need support the most, my first line of defense is to push people away. And then I hurt even more, because I'm lonely.

Today I spent a long time with my therapist identifying self-defeating behaviours, and coming up with ways to overcome them.

When I'm sad, I go into hiding. I lock myself up in my bedroom, and don't really leave (except for class, and my job). I don't see anyone or talk to anyone until my little period of depression is over.

BUT, one thing that could pull me out of the depression IS seeing/talking to friends. When I'm wrapped up in negative emotions it's the last thing I want to do, but would probably make things a lot better.

The underlying issue here, is the fact that I'm afraid of rejection. I feel like I'm imposing. I don't want to call someone up and dump all my negative thoughts and feelings on them. So if I don't call/see them at all, they won't know this side of me exists, and they can't reject me.

I don't want to be told "I don't have time for you", "I don't want to see you" or "I'm sick of your issues".

My therapist pointed out that if someone does reject me, I will feel sad and lonely and maybe a bit depressed. But if I don't even try, then I'm going to feel that way anyways, so what do I have to lose?

Next time I feel depressed, I'm going to do my best to overcome those voices whispering "don't even try" and call someone. I'll tell you how it goes.

My First Post-Crohn's Travel Adventure

I was in the States this past weekend for a family event, and I realized something. My family has waaaay too many doctors. Just mention the word abscess and my mother had several queries about the C-disease. Luckily after everyone said their bit my illness wasn't the focus of the weekend.

It was also a little bit hard hearing everyone so happy that I'm better, and telling me to stay that way because I know that's not up to me. I can do my best, take my meds and the Crohn's might still progress.

The weekend was a lot of fun, although I didn't end up getting much sleep due to sharing a bed with my little sister who tosses and turns.

My flight was fairly short, and I made sure to use the washroom beforehand so I didn't have any issues on the tiny commuter plane with only one washroom. I brought a couple of extra days of my meds, and some Immodium just in case. I had a little bit of an issue with greasy food, but I suppose that's my own fault for that.

Living in Fear

I am afraid of my Crohn's disease. Terrified, actually.

Every little pain makes me hold my breath, and freak out that this is going to be the one that sends me back to the hospital.

I feel like I'm suffering from post-traumatic stress disorder. I'm out of the hospital, my gastro says I'm doing fine, but I can't seem to adjust to normal life again.

I'm scared of the future. Because even though I'm good right now, in a week, a month, a year my Crohn's could come back. And my Crohn's isn't gentle. My gastro has said several times that he almost caught it too late, and that it is definitely a severe case.

I have big dreams. I want to go to grad school, and pursue a career. I want to be successful. Get married, have children. My future used to be a straight line laid out in front of me. I've already had to take a detour on my course plan, I had to drop one course in first semester, an three courses in second semester. I want to graduate in four years. Hopefully I can catch up through summer school. I don't want to have to take it easy because of my Crohn's. That's not who I am.

I am a perfectionist. I push myself to be the best, to be as involved as I can. I make lists, and colour code them in my sleep. I can't function without my agenda book.

I want to be able to live my life. But Crohn's doesn't follow anyone's plans.

Food for Thought

I don't have an eating disorder. But what girl doesn't have a bit of a sketchy relationship with food and body image. Throw in Crohn's disease, and the picture gets even blurrier.

I am a generally healthy eater. I love fruits and vegetables and whole grains. Being on a low residue diet was practically torture for me. Stuck with white bread, and nutrition from fruit juices and applesauce made me feel disgusting. Plus the prednisone hunger meant I was eating that kind of crap all the time.

Sometimes, I just don't want to eat. Because if I don't eat, and there's no food going through me, I won't have symptoms. I can pretend I don't have Crohn's, and have some measure of control over my life.

But that doesn't usually work for long, because I do get hungry. Then I give in and eat, because I know it's what I should do for my body.

On the flip side, sometimes I just want to bury myself in comfort food. Chips, chocolate, french fries anything awful for me that tastes good. Especially when I'm having a rough day.

I lost about 12 pounds since my diagnosis, and it's a bit hard trying to figure out how I feel about my body now. At first, I felt disgusting. All skin and bones, lost muscle tone and no strenght to speak of. Especially after surgery.

Now, I've gained about half the weight back. I like being a couple pounds thinner than my normal. What girl doesn't want to lose at least five pounds. I'm torn between liking my body the way it is now, and knowing that it would be better if I did put back all the weight plus a little more.

My GI doc wants me to be at least ten pounds heavier. So that when I do have a flare-up I won't be losing too much. But why should Crohn's disease mean I have to get fat? How am I supposed to feel good about myself, heavier, when my life has already been turned up-side-down by this disease.

Welcome to the brain of a teenage girl.

Acceptance

When am I supposed to be okay with this? It's been almost five months now since my diagnosis . . . shouldn't I have gotten over it by now? Can I get over it? Is is going to be a dark cloud hanging above me for the rest of my life, always ready to rain on my parade?

I try and live my life without Crohn's disease on my mind. I do my best to push it away, but every so often it comes back and smacks me in the face.

The feeling creeps up on me, and I know the tears are going to come. I feel sad, lonely and alone. It makes me want to reach for some comfort food, or sometimes the opposite: not eat. I know this isn't the answer, but sometimes the lure of a quick jolt of chocolate, or the need to be in control of something is too tempting.

I guess I'm lucky enough that I can forget about my Crohn's most of the time. The only reminder being my morning pills and little baby stomach pains during the day. And my mom calling me up every few days to find out how I am, and discuss my bowel habits.

But I don't want to feel this way. I had a good week, and a fantastic day and the depression snuck up on me. I mentioned it to my counselor last week, but I don't think we really addressed it.

Looking Up

I know things have been a bit gloomy lately on the blog, but my life really isn't that bad. I've been getting out more, seeing people and having fun! It's just very easy to use writing as an outlet for all my negative thoughts and feelings, because sometimes I don't want to burden my friends with all of that.

I went to my first pilates class since surgery last night, and my abs aren't thanking me for it. Actually my whole body is hurting, but I really want to gain back some of the muscle tone I've lost this year with being sick.

I have been attending yoga for the past couple of weeks, and I'm finding that a very mild work-out. I love the breathing exercises, and the way my instructor finishes each class with a story!

And this week is Arts Matter at school, put on by my Faculty society. I've been helping out at the art exhibit, coffee house and film festival. Tons of fun, and very talented people!

I did have a little bit of pain on my lower left side yesterday. It was pretty sharp, and it happened three times. I've called my gastro about it, hopefully it will be nothing. It freaked me out a bit because so far all my Crohn's activity has been on my lower right.

Motivational Issues

Lately I've been having an awful time keeping myself motivated.

I missed all of my first term exams, and had them deferred to reading week and the week and the weeks after . . . aka now. So what I should be doing is reading textbooks, making study notes and quizzing myself, but I would much rather be on facebook, reading other chronic illness blogs or online newspapers.

I even cleaned my room and the kitchen this morning as a form of productive procrastination.

I find that I'm so much less focused on school right now. I know it's important, and that I need to do well, but I can't seem to find the motivation to buckle down and get the work done.

I am generally a good student, and I don't want to see my marks slip on account of all this Crohn's business. But with exam after exam after exam plus this term's course work I feel like I never get a break.

Lately the pattern of my days has been go to school, stay until about 5:30 and then come home, eat dinner and study. Boring. And not much of a social life besides a couple of lunch dates.

I know this exam business will be over soon, and I can't wait!! I just wish I didn't have to spend all my time studying until then.

Depression

At first, I thought if I just ate right, excercised and took my meds I would be okay. But then it got so bad that I had to have surgery. And I developed a post-surgical leak.

It just seems to be one thing after another. I go back and try to continue living my life, but inevitably I end up back in the hospital.

It's depressing.

Also, I haven't told the majority of my friends that I have a disease. My second two hospitalizations were conveniently over Christmas and just before reading week. It's a bit lonely. I fell out of contact with a few people when I was in the hospital, and I'm now trying to reconnect, giving vague excuses for where I've been.

But some days it just gets to me. This isn't going to go away, and it sucks. And so I sit around and throw myself a pity party. Cry a little bit and listen to appropriate music. Binge a little bit on junk food.

But lately these bad days have been starting to pile up, and I don't want to live like this. I want to have fun, and be fun. I could use a bit more energy. I wish I could go back to before, when life was so much less complicated.

Here's a quick update. At my follow-up with the Surgeon, I was poked and prodded at. Since my pain was pretty much gone, we were given the option of re-imaging or letting it be. We opted to wait and see, if the abscess was still there, I'd feel it.

However, going back to the hospital was hard. I can't help but feel like everytime I walk through those doors, there's a chance I might not get out for another week or two. We could discover something else horrible that my body is doing to itself. I just don't know how to shake off this negative attitude.

I got Crohn's and lost a boyfriend

It wasn't exactly a cause-and-effect type thing. We had been having problems for a little while, and this just seemed to exacerbate them.

When your girlfriend is in the hospital, a couple of text messages doesn't exactly cut it. And a one hour visit where you can't wait to get out of there doesn't help either. I felt like we didn't really talk anymore.

And I was scared. A chronic disease, which I'm going to have for the rest of my life. And one with symptoms that aren't exactly polite dinnertime conversation.

I didn't want to tell him. And I kind of needed some time to deal with everything myself.

So we went on break. He didn't exactly protest, telling me that "he'd respect any decision that I made" and later in the conversation asking if "I even still loved him".

Feelings aren't a light switch that you can turn on and off, but sometimes they aren't enough.

We met one week later for coffee, and ended up having more fun with breaking up with each other than we'd had dating in a long time.

We'd gotten boring. School, work, plus an undiagnosed chronic disease left me exhausted all the time. I didn't want to go out, and hanging out in my room wasn't all that much fun.

It's been a couple of months now, and I know that it was the best decision for me, at the time. Our relationship barely made it through one hospitalization, I'm glad it didn't have to try and survive the next two. As well, when you miss weeks of class and all of your exams it helps to have a lot of free time for studying.

I am not a complainer

My GI doctor's favourite word to describe me is stoic. It's not the most attractive word in the world. Kind of makes me think of rocks. Boring grey rocks. I prefer determined.

I'm determined to do what needs to get done, no matter how much pain I'm in. How else could I get by with four years of chronic pain? If I took a break every time I hurt I wouldn't be able to get anything done. I would have to admit to myself that there was actually an issue. Other people might notice that I had an issue.

If I'm in pain, I'm not going to cry about it. I probably won't take a pill for it. I might not even mention it at all, and if you ask about it my automatic response is "I'm fine".

This sometimes makes things a bit difficult. For example, if it does get bad enough that I do need pain meds (at this point I'm usually in the hospital) I will calmly ask the nurse for pain meds. The only thing that might betray me is a hand gripping the side of the bed for dear life. No crying, screaming or whining for me.

This means that it's sometimes hard to make doctors or nurses take me seriously. If I mention that I'm having a symptom, it means it's happening, and probably fairly severe. And I'll probably only bring it up once. But you'd have to know me to know that, and that's where it gets tricky. If I have a new nurse every two days, and different doctors pop by every day sometimes things get lost because I'm not complaining.

My mom jokes sometimes that I need to practise my pain face. I think I need to practise being more assertive. I guess this blog is a place where I can let all those complaints out.

Where we are now

Eight weeks out of surgery and a new abscess.

I went to the hospital at the end of January for pain. In the same spot as the first abscess. It had been going on for about a week and I couldn't ignore it anymore.

The ultrasound showed inflammation and a possible inflammatory process. The CT showed inflammation. IV antibiotics for a week, 2 iron infusions. All set to send me home halfway through but my pain isn't gone so I push to stay.

It's too early for a Crohn's flare-up, but too late for post-surgical complications. GI and Surgery keep trying to pass me off to eachother.

Reimaging MRI once the antibiotics have been done for a couple of days. An abscess developed. 1.7 x 1.3 cm this time.

Sent home with oral antibiotics and a follow up appt with surgery in a week.

The saga continues

I went home from the hospital, recovered for a week and went back to school. I thought everything could be the same. If I just took my meds, tried to get in 5 servings of fruits and vegetables on a low residue diet and got enough sleep I could keep this disease under control.

Two weeks later I was back in the hospital with a low grade fever, pain when I ate and no bowel movements for 12 hours. Possibly a blockage.

I was admitted right away, and the blockage cleared itself up a couple hours later. The doctors wanted to discharge me, but there was still that pesky issue of pain, and inflammation. When it hurts to eat something, or take a sip of water something is definitely not right.

IV steroids and clear liquids. Two weeks later still no improvement. A section of my small intestine was so scarred that it was sending blockage messages to my stomach, and causing pain whenever something came in.

The solution: surgery.

The plan: remove six inches of small bowel.

The reality: twelve inches of small bowel, my iliocecal valve, some colon, my appendix and the abscess came out. As well, my small intestine had been detached from my stomach and fallopian tube. Luckily they were able to do it laparascopically.

However, the first night after surgery my blood pressure was low and the nurse turned off my epidural. I always have low blood pressure, but we didn't know to argue this until we spoke with the pain management nurse the next day. That night was the worst night of my life. On the pain scale of 1-10, it was a 100. It also set my recovery back a couple of days, because once your pain gets out of control, it can only be brought down in increments - nothing can make it completely go away.

A week of recovery in the hospital, and then I was out. Tapering the steroids and ready to get back to normal again (hopefully!)

Thank goodness this happened over exam period and Christmas, so I could keep it on the down low.

In the beginning . . .

There was pain. For four years, I had stomach pain. It started randomly, could be several times a day, wasn't related to what I ate and it was invisible. Also diarrhoea and a bit of blood, but I didn't tell anyone because it was too embarrassing.

Four years ago, I had it tested. Ultrasound, upper GI (barium), blood tests showed nothing. Except that I was anemic. So I just dealt with it. Ignored it and kept going.

It didn't go away though. Last year I decided to do something about it. Again, went through all the tests. Upper GI, lower GI, ultrasound, more blood tests and nothing. I was given "Irritable Bowel Syndrome" which means they have no idea WTF is wrong with you.

So again, I dealt with it. I never took any painkillers because the pain came and went quicker than they could kick in. I curled up in a ball in my bed when it hurt too much to study, and I moved my boyfriend's hand off my stomach when we cuddled.

Then, one day after swimming I had pain. Near my hip, on the inside and at the front. Sharp, brutally painful and hurt to move. It went away after a couple of days, but then it came back. I saw a Dr. They told me I had iliopsoas tendonitis, and should take advil around the clock.

I took advil, and suffered for a week or two. It got so bad that I couldn't go to school, so I saw another Dr. We went to the sketchy walk-in clinic at the strip mall across the street. They prescribed a stronger painkiller. I took it and it did nothing, except make me throw up. I tried to study for a test that weekend, but I was in constant pain. On the Monday, I saw my family Dr, and ovarian cysts were thrown around.

I was freaked out, so we went straight to the ER for an ultrasound. Possible appendicitis or an abscess. Then a CT scan.

It was an abscess. And inflammation of the small intestine (iliocecal). One colonoscopy later, I had Crohn's Disease.