Things to know about living with IBD

Hello lovely readers,

It has of course been awhile. I feel like things are finally starting to settle but I have 0 energy now and want to do absolutely nothing. So I do as little as possible. I wake up, I go to work, some days I workout (SUPER EXCITING), some days I see friends, I will do school work, and then just do nothing at home. Then repeat. Obviously there are some key elements missing there like I do cook dinner and shower and stuff. It’s just not that important to bore you with all the details.

THE POINT IS- I am tired. I need to perk up and do the things that I love so here I am writing again. Pushing myself to do better.

Baby steps.

I did want to do a quick little shout out on this post to Melody. She had e-mailed me a little while back and honestly it really touched me. She talked about our shared experiences and it really reiterated the whole reason I started this blog. To remind myself and others that you are not alone. That whatever I am experiencing, some else probably has too or is just starting to experience it. This whole illness seems to be a lot of fumbling around blindly and trial and error. You never quite know what to expect out of your day. Unpredictability and me have become very close friends over the last 2 years, which is hard to accept coming from a control freak.

So thank you Melody, for giving me that little push I needed during a down time and reminding me of my purpose for all of this.

With that I wanted to leave you guys some funny but very real things I have learnt in living with an active IBD.

You go through A LOT of toilet paper. Since I have moved out my parents love to tell me how much less they go through and my boyfriend likes to remind me how much more we go through. I am a little human (5’3 and usually around 95 lbs) so I am sure it is surprising to know how much shit comes out of me-literally.
2-3 ply is your friend. Give your butt the loving it needs. It didn’t ask for this either. On really bad days, baby wipes are great- just very very cold….
If you are in a flare up have a survival pack:
- ALWAYS carry extra underwear with you and maybe an extra pair of bottoms. You never really know. While I cannot say I have completely shit myself I have become very familiar with sharting and it is not a fun time.
- Have something to do in the washroom when you are going to have an attack. You could be like me and spend on average 20-30 minutes in the bathroom during one episode. That is a long time to be staring at tiles
- Always carry hand sanitizer. You are immuno-compromised. To you everyone is a germy infested-being waiting to infect you (seems a little harsh and dramatic, but I think I got 3 different versions of a cold in one month).
Have a ready made list of all your medications somewhere easily accessible. The amount of unexpected hospital visits that required me to remember dosing was not a fun time
It’s okay to want to punch people because they don’t understand- just do it mentally. Save what little energy you do have on things you actually like. You are allowed to walk away.
It’s okay if all you did was wake up and keep yourself alive. Your body is fighting an internal war and even though NO ONE can see what you are going through, you know. No one else has to be you and deal with your day to day living, so screw them!
Meal replacement drinks are always a good idea to have on hand. There are mornings when I wake up feeling good and by the time lunch rolls around the very thought of eating makes me completely nauseous. And sometimes just food seems to be my trigger. Where anything I ingest seems to want to make its way out. Because why would I need to eat to stay alive, right body? At least with the drinks they are easy to go down and give you a boost in calories. I personally go for the high calorie drinks
Be prepared for people to know very little about your illness. Most people just think you just shit a lot, which they don’t think is THAT big of a deal. “At least it’s not cancer.” Well, not yet. It could turn into cancer over time if you remain inflamed for a period of time. Sometimes it can be worse than certain cancers. And you can take chemotherapy agent drugs to help with the disease, so are you really winning?
No one case is exactly like the other. While we may all have an IBD, I find everyone has it a little bit different. Even in my two years of having it, it has manifested itself a little bit different each time my flare up got worse and depending on the medication I was on.
Learn to laugh. Learn to see the brighter side of things, because if you don’t it will consume you. I look back at the frantic moments I have had where I have literally tossed my boyfriend my jacket and purse while I run for a portipotty, or the moments where I called my mom or boyfriend and had them standing at the door ready to open it so I could run from my car to the house and hopefully make it to the washroom. Of course in those exact moments I wanted to cry, but now looking back at it I can only imagine how comical it must have looked to my neighbours. It’s about the only time I really will ever run voluntarily.
DON’T BE EMBARRASSED. You did not ask for this life. There is no way I would have ever asked to have a disease that makes me way too familiar with public washrooms/portipotties (I used to HATE anything that didn’t flush and wasn’t clean. I would force myself to hold it if it was a nasty washroom), that made the word sharting an actual well lived experience, and that made people ask me “how do you stay so skinny?” “how do you have abs”…. oh I just shit a lot. Don’t try it. No. No one asked for this. So do not apologize for your body not getting its shit together figuratively and literally. You do you honey boo boo. Just do what you need to, to get through the day and forget about everything else.