I did a quick video for the #IBDSuperHeroes World IBD Day challenge, but I thought of a lot of stuff after, which I would never have got into less than two minutes anyway. So, here’s my answers in blog form!
Who are you (name, type of IBD and diagnosis year)?
Sahara, diagnosed with Ulcerative Colitis in 2007.
How does your IBD impact your daily life?
It’s actually really weird, because I generally think it has very little impact on my daily life, because my health is so much better now than it has been for years and years. But, when I actually stop and think about my life in comparison to a "healthy" person, it is actually quite different! I have just gradually changed how I live over a long period of time, so it’s MY normal, but it's far from normal really!
I have a permanent stoma now, after having a Jpouch excision in 2018 due to severe, recurrent Pouchitis. My intestinal symptoms are mainly under control.
I take omeprazole daily for acid, or I experience abdominal cramps and heartburn. I take a number of vitamins because of malabsorption due to having no colon. I have iron infusions when I need them, as I don’t tolerate oral iron well, plus I take regular loperamide to regulate my stoma output.
Dehydration is a constant battle, so I am very aware of how my hydration levels are. It’s not simply a case of drinking more water for me. I have to have an electrolyte replacement solution if I become dehydrated, which doesn’t taste too great.
I poop in a bag which I have to empty multiple times throughout the day and at least once every night. I generally change the bag every other day. Again, it seems normal to me now, but I guess it has to be counted as an impact on daily life!
I eat in a very specific way, at set times. I can now eat most fruits and vegetables, but I have had years where I couldn’t. A few, I can east on their own, but different types usually need the addition of some form of starch. How much depends on the vegetable, and I automatically know now, so it’s like second nature.
I don’t sleep well - ever. Between having to get up and go to the toilet and the joint pain which means NO positions are comfortable, I have very little time in restorative sleep stages, which I have no doubt contributes to the fatigue and lack of concentration.
The things I do notice having an impact every day are the chronic fatigue and joint pain. Energy levels change day to day, so it can be hard to plan activities based on how I feel one week, because the next one might be completely different. Pacing myself is something I have got a lot better at, but there’s no real algorithm to get it right all of the time. I still frequently realise that I have too many things to do, and if I do manage to them, I suffer for it.
How has having IBD made you a stronger, or better person?
If someone had told me just 3 weeks before my diagnosis that I would go through 7 bowel surgeries, have 3 different ostomies and ultimately end up happy and grateful for a permanent one, I would genuinely have laughed and said "Get fucked". I was a bit of a dick back then… Yet here I am - smiling.
The journey has made me stronger, because I have got through everything that I thought would beat me. Nearly dying made me re-evaluate everything. Work, relationships, what I was willing to accept in my life and how I handle stress.
I have changed career, gotten rid of many negative influences in both lifestyle and human form. I run a support group and awareness campaign. I sit on the board for Cure Crohn’s Colitis. I now earn money from the stuff I invested so much time and effort in, purely because it mattered to me! I write about IBD and ostomy life for a couple of different sites and magazines, and I use my personal social media accounts to support others with IBD, and hopefully help ease the journey and contribute ideas to how people with IBD can overcome the barriers they face. Plus, I work with Pharma, in the hope that together, we can finally create an activated community. Providing tools to take back some of the control it feels like we lose to IBD.