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Crohn's + Perianal Disease: A Literal Pain In the Butt

I, like most with IBD, experience a number of secondary problems related to the ongoing challenge of living with Crohn's or colitis. The 2 that stand out the most for me, along with the fatigue and pain, are renal colic (kidney stones) and the worse of them all, perianal disease.

Fissures, fistuals, abscesses... what fun

Perianal disease, otherwise known as anal fissures, fistulas, and/or abscesses, is the literal IBD "pain in the butt." If the minute-by-minute, day-by-day, week-by-week, month-by-month, and year-by-year abdominal pain from IBD wasn't enough... throw in some more pain that's worse when you walk, sit or stand.

You can also add drainage, blood, and mucus. Fun. Ironically, the drainage, blood, and mucus are a good thing. If it's doing that, then it's draining and most likely won't abscess.

My perianal disease first showed up less than 2 years after my Crohn's diagnosis, which put me in the Emergency Department for an incision and drainage of a perianal abscess. I'm not sure what was worse, though, the abscess or the needle they injected around it to numb it for incision.

Painful Crohn's emergency visits

One time I went for drainage they gave me two Tylenol 3s and I laid there waiting for it to kick in before they came back and lanced it. Ouch. Thank goodness that was only one time. Every time after that was conscious sedation in the ED. I usually fall asleep do I don't remember a thing.

One time the surgeon was a little too enthusiastic and started cutting before I was "out." There were a few times when I needed to have surgery and a seton was placed inside. This is designed to leave the incision open and lets it heal from the inside out. It takes a while for it to properly heal but worth the wait in the end (even though uncomfortable to say the least) – but a small inconvenience to avoid it from re-abscessing.

Keep in mind, I'm a procrastinator so I would deal with painful abscesses for weeks before "giving in" and going to the hospital. Usually it would be when I can no longer sit, which is not a great idea, especially when all you can do then is stand in the ED waiting area.

Perianal abcess: the worst Crohn's pain I've ever experienced

I have experienced a lot of pain from different sources when it comes to my Crohn's but THE worse was developing a perianal abscess the day I arrived in England for my Nan's memorial. It goes to show you how unpredictable and unforgiving this illness is.

The day I left on my 9-hour flight, everything was fine but by the time I arrived I could feel the beginnings of an abscess and by the next day it was painful. I tried taking warm sitz baths with Epsom salts which sometimes helped but nothing seemed to work. I still had several days left before heading back home.

Walking around London and sitting in restaurants was so painful and I kept trying to adjust my posture to try and keep in a comfortable position. And why did every place I went have hard, solid, painful wooden chairs?!

No relief from the horrible pain

My cousin ended up taking me to her doctor because I couldn't handle the pain and I was sweating. He recommended hospitalization to lance it but my flight was only 2 days away so I declined. In hindsight, I should have done it and taken a later flight.

The 9-hour flight home was the worse pain ever.I wish I had brought some pain meds with me. If this incident wasn’t a great example of why you should get travel insurance, I don’t know what is. When I was picked up from the airport, I went straight to the hospital to get it lanced and once it was, oh the relief.

I swore I would never deny myself pain relief even if it means going to a foreign hospital.

Eliminating perianal disease by surgery

I was put on biologics in 2012 in an attempt to eliminate the perianal disease. But 10 years on 2 different biologics didn't help. I gave up and made the decision to take the next step and have ostomy surgery at the end of 2020 which included a proctectomy (removal of rectum and anus).

Almost 2 years now and I have not had any perianal problems. No fissures. No fistulas. No abscesses. But most importantly, no pain.

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