So it has been IBD (Crohns and colitis) awareness week and what better way to be reminded of your IBD than you going into a flare. I have been so busy trying to pack and organise everything that needs organising that I just haven’t had time to be so very active during the week to raise extra awareness, and I’m a bit upset about that really.
I was diagnosed with Ulcerous Colitis in the spring of 2015 and lost my large intestine to it the winter of 2016. It can be extremely tricky having an invisible illness, and it can be even more tricky trying to explain to someone what is going on in my body and how I am. Like I often see on so many photos: “You don’t get it, until you get it”. I have always been extremely stress-sensitive and with all of these changes going on and trying to organise my life I have been struggling with coping with the stress as much as I wish I could, and I can feel it. Even though I no longer have my large intestine, my colitis still affects me, my rectum goes into a flare amongst other things.
IBD’s affect so much more than just your intestines and are so much more than a “pooping” disease. IBD affects your whole immune system as well as causing mouth sores, brain fog, the teeth/gums get affected, overwhelming fatigue, skin eyes and liver problems and swollen joints/pains/arthritis, and anaemia. One thing that often gets forgotten about is the fact that it may also have a hugely serious impact on a persons psychological health. Having an IBD can make leaving the house a huge task and can really lower one’s self-esteem.
Having an IBD also means that we have to undergo some not so fun checkups which can be really diminishing and puts you in a very fragile, exposed and sensitive state. I have had some very awful experiences with colonoscopies and sigmoidoscopies. (A colonoscopy is where they look at the full large intestine with a thin flexible tube with a camera on and sigmoidoscopy is where they look at the rectum and the lower part of the colon if that is still there.)
While packing and going through my things I found various amounts of beautiful underwear I have had to wear on my various hospital stays or colonoscopies. The three photos on the top row were the “normal” hospital knickers and the two on the bottom row are the colonoscopy knickers. (Picture at the end) I remember laying on the bed as they gave me sedatives (it was a must the second time because I refused to have another one awake because that first one was one of the most horrendous experiences ever). I was laid on my left side, knees bent with the nurse talking to me, and suddenly hear the doctor (or nurse for all I know) cutting that slit in my knickers, as if I didn’t feel small and vulnerable already… I’m not really sure why I’ve kept themI guess it’s a little reminder of all the shit things I’ve had to get through…and managed through…
We need to raise awareness for Crohn’s and Colitis as they really do affect us in more ways than people think, and it is such a sensitive subject, I mean who wants to talk about their toilet visits with their friends, families, and workplace?! I know I for one never, and I mean never in a million years would even dream of talking about those things 4 years ago, I was always someone who “didn’t do those things”. I learnt from my mistake, I ended up in the hospital because I never told anyone how I was feeling because come on, how do you tell someone “I’ve been going to the toilet a lot lately, and it’s sort of like all bloody”… hmm… now, well now that doesn’t happen but I am so much more open about things and it really shouldn’t be something to be embarrassed about. Sure, we don’t need to go around shouting everything out, but it needs to be something we talk about because how can we ever get the right help if we never talk about it? It is also important that we listen to our bodies, and that usually means that we might need some more time off work, or shorter days to be able to stay in remission, and how can we fix that without talking to our workplace for example.
Oh a side note, I am so ready for a break now. Everything is catching up on me, I’ve also been fighting a really bad cough/lung pains, runny nose, headache and well just a flu-like thing this week, on top of a temperamental rectum and period pains from hell. Despite all of this I have just about managed to work, and pack my life together… at the minute I do feel like I’m one little step away from crashing so approach with caution… haha
Anyway, I best get on, so much to do, so little time!