Things I Wish People Understood About IBD Part 2

Happy IBD Awareness Day! In honor of further raising awareness I thought I would do another one of these posts. This of course is all from my personal experience and can be different for everyone, but hopefully some of you can relate and have a laugh!

1. When I say I have to go, I need to go now…..

I have talked about this before, but it seems lately I have had this beig asked of me far too often so I thought we could use a refresher. Sooooo often I’ve heard people ask if I can hold it? Can I? I mean while you’re asking me this question, I am already asking it too as I plot mentally the amount of time it would take to run to the washroom and the probability of me making it. If I’m hunched on the ground, clenching my butt cheeks as hard as I can the answer is most likely not…..The urgency to go comes out of no where and hits you so fast. I have publicly lost control of my bowels maybe 10 seconds after feeling an urgency. And jeans with lots of buttons are not your friend during a flare up. I have panicked trying to unzip my pants standing over a toilet because I didn’t think I could make it.

2. I can’t predict my flare ups

I could be feeling so sick in the morning and then by the afternoon it would be like nothing happened. Or the opposite, where I wake up feeling ready to tackle the day, and then my body decides to shake things up a bit and we get sick. It could change in hours or even just minutes. So I apologize if I have to cancel last minute. It’s really not you or me trying to be antisocial, it’s just that right now I have no control over my body, especially in a flare up. And even in remission, most people say when they get a flare up again, it comes out of no where! Cut us some slack. Our bodies and ourselves aren’t exactly in-tuned to each other now sadly.

3. Tired doesn’t even explain my exhaustion

Also touched on this before but now I have an even better understanding. And the worst part is sleep literally doesn’t help. I have struggled to stay awake driving to the point that I have refused to drive, I have fallen asleep on the toilet as I wait to determine if its a false urgency or really a poop attack coming, I have fallen asleep during my lunch breaks, but at 10 pm I am wide awake. And it’s not even “awake” because I will yawn, my eyes will feel heavy, ect., I just can’t sleep. So then you end up in this stupid cycle of being tired all day then staying up all night. And the exhaustion affects so much. I have become even less coordinated, simple tasks seems to take a lot more brain power to do, and my memory is absolute garbage. My brain functioning is absolute garbage. I accidentally put a bag of bagels in someone else’s cart and my friend kept saying “that’s not our cart” as she was watching me approach the cart, and I swear it was like a delayed reaction to what I was hearing and registering what I was doing. I could hear what she was saying, but I still put it in there anyways. Garbage!

4. Yes I can look fabulous, while feeling like WW3 is happening inside my body.

Briefly touched on this last time, but I would like to add to it. Now there are someday’s that I don’t look as fabulous and these are usually times where I am sick on top of being in a flare up, like last week when I was fighting another infection/flu, or when I got a oral yeast infection. But for the most part people don’t know I’m sick. It’s called an invisible illness for a reason. Unless you see me right after I come out of the washroom and my colon has just ripped me a new one, I look just like everyone else. But let me tell you, I do not feel like everyone else and if you’ve read my blog you would know the physical and mental battles I have already faced and I know there are people far more worse than me.

5. IBD is not IBS

My heart goes out to anyone who has any bowel issues, because they fucking suck and can be super embarrassing. But please do not sit there talking abut someone you know who has IBS and how they were cured. They aren’t the same thing. To start IBS is not an inflammatory condition and it actually known as a “functional disorder”, meaning the symptoms don’t have an identifiable cause. IBS isn’t even considered a disease. IBD on the other hand is an inflammatory disease that causes chronic swelling.

Symptoms of IBS

• Diarrhea
• Cramps
• Abdominal pain
• Constipation

Symptoms of IBD include all that was mentioned above and:

• Joint pain
• Eye discomfort
• Rectal bleeding
• Extreme fatigue
• Anemia

Most people who have IBS will not get IBD as well but people with IBD often experience IBS symptoms. Individuals with IBS don’t need surgery, however as many of my fellow IBDer’s know, surgery is something we always have to consider because sometimes medication doesn’t work and leaving IBD untreated can result in serious consequences including developing cancer or even reports of fatalities have been made.

IBS can often be controlled by medications, probiotics or even dietary changes, however IBD can be less forgiving and dietary changes and medication may even not be enough. IBD is a lifetime disease that has no cure, so it could only be managed.

6. IBD can make you lose weight quickly, or gain weight quickly.

How quickly you ask? Depends on your medication treatment and the progression of your disease. When I first got sick and started my treatments, in three weeks I progressively lost weight. After the first month of being diagnosed I went from 95 pounds to 87 pounds. I panicked because for once I looked so ill and it was so hard for me normally to gain weight. Enter in Prednisone. I then went from 87 pounds to 102 pounds in about two months! My body changes so drastically in such a short period of time. Even looking back at pictures of myself a month ago shock me a little bit and the quick changes became a big part of why I started to struggle to love myself.

7. Eating during a flareup is such a gamble

Even my “safe” foods can cause such havoc in my colon, and then foods I normally can’t handle sometimes don’t cause flare ups! I went to a vegan restaurant and quickly discovered my bowels and I could never take that road to that kind of a lifestyle change. Fibre and I will never be friends. But someday’s I can eat popcorn and not be punished and other days I eat plain rice and you would have thought I ate a burrito. Caffeine and I have a rocky relationship. Sometimes I get lazy at Starbucks and don’t ask for decaf and other days even decaf causes problems. There’s no winning!

8. Wherever we go out in public, please note we are not scouting for the nearest exit in case of an emergency, we are scouting for the nearest washroom. 

Ask me where you can find a specific item in a grocery store, and I may not know. Ask me where the washroom is and I can gladly help you. And if there is no washroom, I start to stress. I swear my bowels have some washroom telepathy because anytime I am near one they start to sing their warning song that a storm is brewing and we need to go in there-now. And for trips I know where washrooms are not readily available, I always have wipes, tissues, and extra underwear.

9. I understanding working out is important. Yes, I should walk in the IBD marathons that help raise awareness- but sometimes I can’t because it’s literally not convenient.

Let me explain, especially for the walks because I got a lot of heck for not taking part in something for my disease. Gyms and these walks have two things in common: both were probably created my a healthy person or at least someone in remission. I have seen the walks and there is not a port-potty every block or two, which to me is so backwards because hello! We always talk about needing a washroom! How could I enjoy a walk with the potential fear that midway through I will get an urgency and the closest washroom isn’t for another 4-5 blocks? I. Will. Not. Make. It. So I will wait until I’m better.

Same with the gym. Especially with my elderly like walking someday’s due to joint pain. Plus there are days when I give myself a serious pat on the back for getting through a full workday. I do try to stay somewhat active or at least go for walks, but please do not comment to me about my lifestyle choices, especially when you are healthy.

10. Prednisone makes us crazy, and we really can’t help it!

Prednsione is a quick fix that can really help your symptoms during a flare, but my god it can do a whole lot more. Roid rage is a thing. Roid crying fits and tantrums as an adult are also a thing. You are not a rational human on these drugs and they make you so all over the place and you just have no control over it! There were days where I got pissed at people just looking at me and then two minutes later I wanted that person to cuddle me and give me attention. You’re like a cat.

Well hopefully you had some fun reading this and maybe got a different perspective! I am off for the long weekend to escape to the mountains. I’m a little nervous because I’m in an active flare up again, meaning were back to the bleeding, nausea, and 5-7 washroom trips. And of course I’m going with 7 people and there’s only one washroom…..

Also to update my treatment changed again…. surprise surprise. Now that I’m down to 1 pill of Prednisone a day, my body has been revolting. As a result we are now trying Humira weekly (instead of bi-weekly) to see if this will help me get out of my flare up without having to go back on Prednisone. Fingers crossed….

Happy Weekend!

Bee.