As it’s World Mental Health Day, I thought I would share how IBD has affected me for some time. First it was the symptoms of Crohn’s that were affecting me and then the complications from having an ostomy. 

Living with IBD

I’ve had IBD since the early 2000s and I’ve had my ups and downs with flare ups, perianal abscesses, fistulas and fatigue. I’ve gone through having proctitis, ulcerative colitis, indeterminate colitis, CrEohn’s Disease and finally settling on being diagnosed with Crohn’s Colitis (Crohn’s that only affects the large intestine (colon). 

It’s becoming more well known about the symptoms of IBD and all of them can make you feel pretty crappy and down. For a long time I’ve had to worry about where the nearest toilet is, I’ve had to worry about what happens if I can’t make it to the toilet, I’ve had to deal with not making it to the toilet, I’ve had to deal with uncontrollable pooping in the middle of nowhere due to suffering from incontinence and I’ve had the anxiety of worrying about all of those things happening at a random time in a random place.  

That can really mess with you mentally.

And a lovely complication from Crohn’s Disease are perianal abscesses which are as bad as they sound. They appear at random – usually when you have something planned – and require surgical intervention to fix followed by a period of recovery. I’ve lost count of the number that I’ve had but it reached a point where I would know when one was forming and what for the optimal time and then admit myself into hospital to get it fixed. The abscesses were the source of many a cancelled holiday. 

The pain, the inconvenience of having to cancel trips and the fact that I’d had so many that I was becoming incontinent can really mess with you mentally.

In addition to having to cancel trips, I was also unable to continue running which was something that I was really enjoying. In hindsight you think that you should have been stronger and ploughed on regardless but feeling fatigued and pooping yourself just a mile into a run can really mess with you mentally.

A Solution?

Having an ostomy was seen as a way of fixing many things. Even though the Crohn’s Disease would still be lurking there somewhere, I wouldn’t have to worry about many of the common symptoms such as fatigue, pooping myself on a run (if I did I’d have it covered with the bag for life). 

In the early days after surgery I was heading back on track and I was able start running again and also managed some swimming. I was feeling a bit more upbeat. I had planned races for the autumn and despite the Ken Butt not being fully healed, it wasn’t too bad. Then things went downhill. 

The Ken Butt wasn’t healing, and was getting worse by joining up internally with the pilonidal sinus. Oh,and there was a pocket of fluid on my pelvis! I was having to visit a practice nurse 5 days a week and seeing a district nurse most weekends. Having a dressing changed nearly daily can really mess with you mentally.

I was unable to run again and eventually had to have surgery to open up the Ken Butt again and have a VAC dressing fitted. Now things were getting really bad. Not only could I not do some of the things I enjoyed doing, I couldn’t plan anything (and was cancelling the autumn races I had booked), I was also tethered to this noisy machine 24 hours a day. That can really mess with you mentally.

A few months after surgery when it became apparent that the Ken Butt wasn’t healing, I was plagued with the uncertainty of not knowing what was going to happen in the near future and how long it would take until some sense of normality resumed. Having the second round of surgery and the VAC dressing was supposed to assist with that but when the VAC dressing is removed it’s back to the routine of daily dressings during the week and district nurse visits on the weekend. Granted, the wound is in a better position to heal but it’s still a ‘fingers crossed’, I hope everything goes well process of healing. I don’t know how long it will take to heal and I’m hoping that nothing goes wrong with it and it doesn’t become infected. That uncertainty can really mess with you mentally.

Where Am I Right Now?

Right now, things are as tough as they’ve ever been. I’m not bothering planning anything at all, not even for my upcoming birthday (last year I enjoyed a trip to London and would have loved to have done something similar but there’s no chance of that). Things change so frequently, even on a daily basis, I’ve learned it’s easier to not have things to look forward to than to plan and have the disappointment of having to cancel. And that can really mess with you mentally.

I’m experiencing all of the classic signs of depression but then I (wrongly) think that there’s no need to do anything about it as I know the root cause and eventually it’ll sort itself out, but then complications keep occurring and it doesn’t sort itself out! 

Thanks IBD!

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Diagnosed with IBD in 2002, I have experienced the usual ups and downs of having a chronic disease and tried numerous medications but the time finally came in 2018 to elect to have surgery to improve my life.

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