19/05/2025
💜 World IBD Day 💜
I’m a warrior, I just wear my battle scars on the inside and my armour is a smile.
I’m gonna use my “superpower” of oversharing to tell you how IBD impacts me. It’s been precisely a year since I last posted about myself so I guess that gives a fair indication of how things have been going. I’m not looking for sympathy, I feel enough self pity so don’t need anybody else’s 😂 but if my story can validate anyone else’s feelings, lead to someone seeking diagnosis and treatment or just feel a little less alone then it’s worth sharing.
I have Crohn’s disease, where my immune system attacks my bowel leading to inflammation and ulceration. My illness has been up and down over the years as has my ability to cope with it. It’s hugely stress triggered. I am currently 21 months into a flare and emotionally struggling more than ever.
The most well known symptoms of IBD are toilet related and not kidding, sometimes it‘s so draining I wonder if I’ve 💩ed out my soul. The fear of having an accident is always there and leaving the house can sometimes feel daunting. But there is so much more to this illness and most of it goes unseen.
I have strictures that lead to blockages which are intensely painful (like level “ooh mother****** 😩” on the pain scale). I’m on a hugely restricted diet. Food can be pretty scary and it can take me an hour to eat a small meal, which then often leaves me nauseous. I have fistulas which join loops of my bowel and can also cause pain.
I’m probably facing surgery to have a bowel resection in the not too distant future (burying my head in the sand about this as it’s all too scary, I’m on a list for Talking Therapies counselling to help work through it).
IBD can have extraintestinal manifestations too. I have joint pain in my hips and shoulders which often wakes me in the night and impacts my ability to do things I used to take for granted.
And the fatigue, well, you can only understand if you live with it. It isn’t about being tired, it’s wading through syrup both physically and mentally and no amount of sleep will make a difference.
I take two immunosuppressant meds which come with their own issues. I’m now super sensitive to UV (who gets sunburn in the morning in January, in northern England, wearing factor 50? 🤷♀️) so have to act like a vampire. I’m meant to avoid ill people. I have blood tests to check for liver damage. I’ve had one medical appointment a week on average this year.
I live with anxiety and depression. I go for a daily walk in nature which has really helped. It does usually wipe me out physically but it is absolutely worth it. Since doing this regularly I no longer cry every day.
I have lived with pain for so long that it has become my norm and unless it is really bad most people wouldn’t know I’m suffering. If you bump into me in the shop I will likely be smiling, laughing and joking (heck, if there’s a banging tune playing I’ll probably be b***y dancing 🤣), all the while I may be feeling sick and sore and utterly wiped out.
The current rhetoric about disabled people makes me feel less worthy. The shame of not being able to do things is crushing at times. My partner works full time then comes home to help with cooking, housework and shopping, even getting me to wash when I don’t have the energy. I feel I ask so much and give so little back.
He takes time off for my hospital visits, calming me when it’s scary, remembering questions I need to ask and answers I’m given when it’s all so overwhelming that nothing sinks in, telling the doctors how it really is if I just smile and say “yeah I’m good thanks” when they ask how I’ve been doing. Telling me that he’s got my back so I know I’m not facing it alone. I know this all scares him too, I know how exhausting it is for him, but he gives me the strength to keep battling. It hurts less when he’s holding me.
It really isn’t all 💩 though. I have joy, I have fun, I have moments of creativity, I have so much love in my life. I’m working on having hope. And I know that there are so many who suffer so much more than I do, so I really do try not to mope.
