Archive for Crohn’s Disease

It’s time you all should know.

Posted in Uncategorized with tags on January 23, 2009 by leighfellows

First off…. This blog is quite long! so, if you only have five minutes, go HERE:
^ this web-comic is the best thing i’ve seen on crohn’s EVER. So, even if you have time to read this blog, go and read this comic regardless. He’s a bloody genius…and he put exactly how I feel into pictures and text. go. NOW. then come back here.

i’m writing this as more of an information packet…. with me, EVERY day is different.
And, because of lately, I’ve decided to finally let EVERYONE know what it’s like to be me. A Crohn’s Disease sufferer. I’ve been hiding it for too long, and really being in denial to <i> others </i> about how I’m feeling, in fear people wouldn’t understand. I’ve never actually told the ‘dirty details’…

So, here we go.

I have Crohn’s Disease (yup, if you want, take a moment to look that up on wikipedia…OR click here> ).

Many of you know this. I don’t keep the diagnosis of Crohn’s a secret… however, I do keep to myself how I’m feeling, or what Crohn’s does to me.

I was diagnosed in May 2003, after months of pain….confusion….diagnosis of ‘food poision’… losing 20 pounds in a little over a week…and being subject dozens of embarassing tests ( now look up ‘colonoscopy’! WEEE).

I was told that I had one of the 3 C’s. Crohn’s, Colitis, or Cancer. We were hoping for Colitis (a distant cousin of Crohn’s). But, finally, they discovered I have quite the rare case of Crohn’s.

Now, you all should know… Crohn’s presents itself differently with each patient. because it can be very <b> widespread </b> in the digestive system, or very <i> specific </i>, the symptoms and complications can vary person to person.

Since I’m in the middle of a wicked flare-up, I’ll discribe how I am right now.
– got up this morning at 9am. this is a big deal…. to me that’s sleeping in. ESPECIALLY since I have bouts of insomnia, and last night I didn’t get to bed until after 3:30am.
– guts were killing me. rolled over for another 10 mins.
– because of the drug cocktails i’ve been on for the past 5-6 yrs, I have arthirtis in my joints (worst joints are my knees and wrists). So, when I got up, I made sure I put on many layers of clothes. Cold joints = more painful joints.
– oh, and for breakfast, i get to have a handful of meds. I’m *currently* on 6-MP (a immunesuppressant), and an assortment of necessary vitamins and supplements. I *used* to be on steriods. Steriods are basically the mobsters of the medication world. They are used for SOOO many illnesses and diseases because they go in there and kick the shit out of whatever is ailing you… one downfall: it has SO many adverse reactions, it makes the consumer completely miserable. I have been on prednesone and entocort, and both created my arthiritis, caused unattractive facial hair, a “moon face”, weight gain, insomnia, night terrors, night sweats, and my fav…mood swings (one minute i’m smiling, the next i’m crying, then right after that i’m ripping you head off!). Needless to say, I weened myself off of them, and am now just staying on immunesuppressants for as long as i can!
– anyways, today is a special day….which makes it even better to talk about.
   overnight, it seems, i’ve made 5 new friends.  they are called erythema nodosum. they are these little nodes that show up on my legs….and the little buggers hurt like a bitch {to put it mildly}. They are rare, but because i’m bloody awesome, I get them when I’m having a serious flare up. These hard, red/purple lumps sets me apart from many other Crohn’s sufferers…. out of my ‘Crohnsie’ friends, I’m the only one that I know of that get them.           lovely.
– right now, my nodes are making basic functions painful. Walking, being the most important one. I’m wearing knee high socks so that the sock elastic band doesn’t land on one (one is RIGHT on the top of my foot where the ankle/shin connect. ouch)
– since I’m having pain in the gut area, I’m also purposely not eating much. eating=pain… therefore, no eating = no pain (not EXACTLY true, but i like to believe it)
 now think about it. what happens to YOU when you don’t eat during the day? you feel pretty crummy, eh?
oh, let me mention… on a good day, my blood pressure is 110/70 (which is a bit lower than the norm). when I got mine checked yesterday, I was 100/60 …and that was AFTER activity, so my BP is REALLLLY low right now.

I’m also anemic. so, my red blood cells have a deficincy of hemoglobin (which carries oxygen)….
so for the past week, i’ve been feeling like a tired sack of shit hahaha. oh, and that’s why I look like “casper the friendly ghost”. My skin is SO pale, I’m almost see-through!!!!
I also have low iron and magnesium.. so people have been telling me to eat shrimp and such…
well, i’m fatally allergic to shellfish (because of Crohn’s). so thats out.
So, I can go from feeling “fine”, to suddenly dropping to my knees (in pain, and about to pass out). It’s a scary feeling… and it makes people around you nervous (my poor coworkers)!

Also, because of Crohn’s, I’ve developed other ‘intollerances’/allergies as well.
here’s to list off a few:
  -alcohol (oh how i love my vodka limes… 😦
  -lactose- filled products (my god, i miss “normal” milk)
  -red meat
  -nuts and popcorn (they feel like razors in my stomach)
  -spicy foods (so no more mexican or middle eastern food for me!)
  -anything with preservatives/additives… MSG and Sorbitol is the worst offenders!
  -any “gas-y” foods…. so beans and cabbage (fine with me!)
  -and anything that would be hard to digest (so during a flare up i try to avoid onions, leafy veggies, anything with a skin or peel, green peppers, apples, etc…).

note: i don’t always follow the “rules”. No Crohnsie is perfect… and when i’m having a good day, I usually will break the rules – often.    most times i’ll regret that about an hour or so later… also keep this in mind….before the onset of my wonderful disease, i never had ANY of these allergies and intollerances… i could eat/drink whatever i wanted, and it never affected me. this all changed once my Crohn’s set in.

oh, and here’s a misconception. *basically the BIGGEST stereotype there is*

yes, one of the most known symptom of Crohn’s IS diarrhea… but for some it isn’t the MAIN symptom. There is more to Crohn’s than pooping. Don’t get me wrong… it happens…Often…ok, embarrassingly often… but there’s more to Crohn’s than just having an extremely bad case of the shits. (if it was only diarrhea, i’d be happy! but it’s all of the complications that go with it that makes this disease SO disabling!!!).
Because my most Crohn’s affected part is near the top of my intestines, near my stomach, I get oddly different symptoms.

Here’s mine:
-Extremely bad heart burn
-Bad cramps (that put menstral cramps to shame!). Imagine someone jabbing a hot knife into your abdomen, and twisting. yup…you’d be getting closer to how i feel.
-Coughing (if i tell you i’m feeling okay, but you hear little ‘coughs’ coming out of me… yeah, i’m sicker than i let on). I cough because of all the acid churning.
-Palpitations (because of my medication, my heart will flutter away at times, leaving me short of breath).
-and when my blood sugar drops, I’m pretty near syncope (fainting).
– oh, and diarrhea. 😦

Complications of my disease:

-Crohn’s likes to be destructive….so when It’s flaring up, it will litterally eat holes {fisulas} through your intestines…and if it gets bad enough, they will start burrowing holes into neighbouring organs. Surgery then comes into play.
-When you take sections out of your intestine, you’re playing in dangerous territory. Your intestines filters out the nutrients (which is why Crohn’s patients look so sickly at times…we’re lacking some vital good stuff!), and the intestines then moves your poisionous feces out of your body. Sometimes, after surgery, they cannot reconnect your intestines together.
That’s when the ‘sack’ gets introducted. it’s a disgusting looking bag, that hangs out of your stomach, that litterally collects your poop. So, you no longer poop out of your anus, you now poop into a bag that’s hanging out near your belly button (sexy, eh?).
sometimes these bags can be taken away, and your intestines sewn back together (it’s called a reversal ileostomy, or colonscopy). this is only sometimes.
-since you’re dealing with your immune system, you’re at a MUCH higher risk of developing cancer (especially bowel, skin, or colon cancer)… you’re a sitting duck when it comes to catching virus…and when you catch something that messes with your immunesystem (in my case, bloody mono), you screw EVERYTHING up. I was pretty near death (my saving grace was a couple blood transfusions), all because i contracted mono and it destroyed my white and red blood cells.  So, everything becomes scary to us.
-and if it wasn’t bad enough, Crohn’s can cause major issues in (a) getting pregnant, (b) staying pregnant, and (c) adverse outcomes for mother and fetus during pregnancy. Being a young female…when I heard these things, I was pretty distraught. Because of my meds, I’ve been told to avoid at all costs getting preggos. (I’m okay with that RIGHT now… but someday, what if?). Oh, and for men, Crohn’s has been known to decrease sperm count, among other things.
-relationships…. Crohn’s DEFINITELY can complicate relationships. The unknown can scare people. And because Crohn’s has no known cause, it has no cure (yet). Not knowing how you’re going to feel day to day (sometimes minute to minute) frightens people. Also, -in my case- some guys can’t handle having a “sick” girlfriend. If passing out, or being admitted into the hospital, or getting weekly bloodwork and transfusions, wasn’t scary enough as it is for YOU, imagine how <b> I </b> feel when the person I want by my side isn’t there due to fear. Oh, and did i mention how Crohn’s kills sex drive (well, at least during a flare up). I’m sorry, but there’s no way I want to have sex when my stomach is queasy – to put it politely. Some guys just don’t get it. So…this is a major complication.

anyways, that’s my speech.
It’s now 7:40pm, and I’m about to finish my day hanging out with my bestest girlfriends, and talking about everything BUT depressing Crohn’s, and I’ll no doubt break some of my ‘foodie rules’. But can you blame me?! It’s hard living with this disease everyday. 🙂