Perianal disease: A timeline PART 1

Perianal Disease timeline part 1 cover

This will be the first entry in a four-part series on my perianal disease timeline, including the healing after my proctectomy. I’d like this series to be as educational as possible, so there will be graphic photos.  I will keep the photo’s hidden, but will link to uncensored versions.  The healing timeline file I’ve put together will be available for download in PART 4, but feel free to contact me if you need higher-quality photo’s (especially if you are a med student, nurse or MD). 

“Ken doll butt”.
You’ll get the joke soon.

The history before surgery (2007 to mid-2013) 

My history of perianal disease started before my Crohn’s disease diagnosis in Oct 2008.  

It was a problem I had long before my digestive symptoms, and it’d be something that’s caused the most problems for me.   

It’s hard to say when exactly I felt something was off, since I wasn’t keeping a health diary before my Crohn’s diagnosis, but I’d estimate that problems were brewing mid-late 2007.  

The first symptom was a mildly sore bum when sitting.  It was more of an annoyance, and it didn’t interfere with my day-to-day life.  

Slowly, I’d get sweaty and a constant burning feeling down there.  

This still didn’t have an impact on my daily activities, but it made driving a lot more uncomfortable.  

As the summer of 2008 rolled in, I was having a harder time keeping things dry, and I began wedging toilet paper between my butt cheeks in order to control moisture.  

I was playing casual soccer at the time, and the anal burning was really affecting my enjoyment of the sport.  

At this point I started getting more fatigued and the pains were getting worse.  

Around the time I had my first colonoscopy in October 2008, I had developed an abscess on the right side of my anus.  

Before it started to drain on its own, it would get very sore, and it was about the size of a golf ball.  

When it finally opened up, it would drain constantly.  

Because I had still been wedging toilet paper there, the fluid would build up until I’d use the bathroom, then it would gush out all at once.  

It was incredibly painful, especially as stool would pass it and the friction from wiping after a bowel movement.  

I was put on a steroid foam enema and metronidazole (Flagyl) in order to treat it, but that didn’t help, and the perianal disease continued to progress.  

Medela disposable breast pads
Medela disposable breast pads

Between 2009 and 2013, my perianal disease had become quite severe.  

I had multiple abscesses, multiple fistulas, off and on fissures and skin tags.  

Bowel movements were extremely painful, and I can recall screaming on the toilet more than a few times.

With frequent, liquid bowel movements from Crohn’s disease, plus the open skin around my anus, I did not look forward to using the bathroom.

The constant draining from these abscesses had become more unmanageable, so I had transitioned from wedging toilet paper to using plastic-backed breast pads.

They were a step-up, but I’d be changing them very frequently (10+ times a day) because they would get so saturated with fluid, including blood.  

Regarding blood, I’d often get “clots” (that’s what I’d describe them as) building up in the abscess and I’d have to squeeze them out to relive pressure.  

It was quite alarming to see, but it was becoming expected, since things weren’t improving.  Skin tags around my anus were also becoming more than annoying.  

One in particular had been getting quite big, and not only did it interfere with clean up after using the bathroom, but it would often bleed and become very painful.  

It actually fell off one day as I was wiping – that was a relief, but I still had other tags that wouldn’t be gone until my rectal surgery.  

Gas and feces would also come through the fistula and into the abscess, which was extremely painful. With the gas specifically, I could remember the feeling of my skin separating as the gas passed under the skin, forming a pocket of air.  

I was put on Prednisone, and later Humira, to help control my Crohn’s disease in early 2013.  

Despite the terrible side effects from Prednisone, within a week of starting it, I noticed my abscesses getting smaller and the fistulas closing up.  

This was quite a surprise, but the damage to the area would come back strong after I discontinued using Prednisone, and later Humira (which didn’t help my Crohn’s).  

Referring to my healing timeline, you’ll notice that June-Aug 2013 was quite bad compared with Jan 22, 2013, which was taken only weeks after starting prednisone.  

On August 21, 2013, I had my ileostomy.  

The diversion of stool away from my rectum and anus meant that those areas would heal quickly.  There was still considerable damage going into my proctectomy on Nov 7, 2013. 

Stay tuned for PART TWO,THREE and FOUR.

I will link the timeline file at the end of part four.

5 thoughts on “Perianal disease: A timeline PART 1”

  1. My son (who is 10) was recently diagnosed with perianal Crohn’s…knowing what you know now…is there anything you would do differently? Any advice is much appreciated!

  2. Thanks Carly. I often feel “lucky” to have had disease in my colon and rectum, because the small intestine is far more valuable, but I’ve certainly paid for it with years of pain and suffering. I feel like a huge burden has been lifted through this surgery.

  3. Wow so insightful to read more about your journey and battle with this horrible disease. Looking forward to the next parts! There are so many parallels to you and Ryan’s stories. It’s just awful and the suffering can’t ever be totally captured by words alone. Only you two and others who have suffered will really know the misery and hell of Crohn’s. So glad you have your ostomy and are sharing the wisdom now!


Leave a comment. (Your email will not be published)