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Monday, 7 December 2020

Update & Crohn's & Colitis Awareness Week // My IBD Journey

This past week, it has been Crohn's & Colitis Awareness Week. I was diagnosed with Ulcerative Colitis back in 2014 after 18 months of being told I had Irritable Bowel Syndrome (IBS). In February 2020, I went on to have loop-ileostomy surgery and although no two days are the same I have had better luck than most who have a stoma. If you'd like to read my last post; click here.

What's Been Happening

Since my May update, I've been doing ok stoma wise. I haven't had many leaks and when I started to get small ones, I just needed a deeper convex bag, so swapped from Dansac to Coloplast. 

With Covid-19, lockdown and shielding, like most, my plans for the year are not quite what I had in mind. One thing that has struck me hardest is the continuation of missing out. After three years of being housebound, it almost felt the norm to be home so getting that one week of freedom before lockdown had completely opened up to me that it isn't. 

Then this past week, I woke up with excruciating pain and was bleeding from my bowels. Although I now have a stoma, I still have my colon, meaning I still have Ulcerative Colitis. 
I'm in a flare up and after what the past year has thrown as me, I honestly wasn't surprised but still very upset. It has been a long time since I have flared up like this. Everyone will experience flare ups differently and this was a sneaky one. It gradually starts to build up but any discomfort, pain, bowel changes or symptoms could be explained by having the disease or side effects of medication. It then hits you full force out of nowhere and I have no qualms is saying, I cried, screamed and was contemplating calling an ambulance or going to A&E. 
It wasn't just Covid-19 that was making me hesitant to go, but even in hospital, most of the time you are given pain relief, maybe put on a steroid drip and sent home with instructions to contact your IBD team. 

I called and emailed my IBD team and in the end managed to speak to my GP. Long story short there is a lot of pain relief that they're hesitant to give me having proximal constipation and a stoma. I can't go onto my usual steroids because of Covid-19, so I was given an oral alternative and suppositories. It's been difficult trying to manage it this time around and I do feel very stupid for not seeing the signs and putting any unusual symptoms down to the fact I now have a stoma. I just feel it's sod's law that it'll be another Christmas where I am not feeling 100%.

Advertising For Crohn's Disease or Ulcerative Colitis 

Before I was diagnosed, I didn't know a lot about Crohn's Disease or Ulcerative Colitis. It isn't something that you see much awareness for in TV or Film. You now and then see story lines in conjunction with something like Crohn's and Colitis Awareness Week or World IBD Day but it isn't enough. 
When I was experiencing symptoms, blood in the stool was one of them and the only advertisements I'd hear surrounding that one symptom were for bowel cancer. I wasn't experiencing anything else that would go alongside the symptoms for that and even then it's such a terrifying thought, that I can see many people not going to their GP because they'd be scared it's cancer. 
So now, after almost 10 years of having bowel issues, blood in your stool is still always seen in an advertisement for bowel cancer and it does frustrate me as no other issues are advertised the same and no other issues are advised alongside it. Hearing something like "blood in the stool, it could be hemorrhoids, Irritable Bowel Disease, Inflammatory Bowel Disease or Cancer" would be better. Not only does it open up a discussion and breaks the "taboo on poo" it also educates more people about bowel issues not always being linked to cancer. Some people do not talk honestly about their bowels to their GP or anyone else, so we need to put out as much information as possible.

Not Every Disability Is Visible

This is one of many campaigns I support. Inspired by Grace Warnock, in 2016 Crohn's & Colitis UK asked the UK's major supermarkets to change their accessible toilet signs. This has exploded into travel hubs, shopping centers and restaurants. It has been a huge leap forward in educating the public that not every disability is visible and helped people realise that those who have issues like Crohn's Disease or Ulcerative Colitis not only need access to a bathroom as soon as possible but why they do.

It Takes Guts

A campaign that is about speaking up, sharing your story and breaking the stigma. I take part in this through my blog and on my social media accounts. It's an amazing way to reflect how no two people are exactly alike in the way they experience their illness and how those who have to go through the surgical route for treatment should'n't be embarrassed about how that changes their body. 

At this point, it's not whether people want to learn about Inflammatory Bowel Disease, it's that they need to. Click Here to visit the Crohn's & Colitis UK website and Click Here to read more about the Not Every Disability Is Visible and It Takes Guts campaigns. 

As always, thanks for reading...

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