Over 3 Decades of Crohn’s Pain… and Finally Pain-Free

Over 30 years ago, if you told me that one day my Crohn's and I would be finally pain-free, I would have probably thought it a dream. Well, I guess dreams do come true.

I have suffered through pain from my IBD since before I was diagnosed. It started with the obvious abdominal pain, from mild to excruciating, followed by secondary pain from kidney stones, fissures, fistulas, perianal abscesses, and muscle and joint pain.

The freight train of chronic Crohn's pain

In the beginning, the pain from Crohn's was so bad, there were days when I would be lying in bed, on the floor, on the couch, etc. in the fetal position. Curled up in so much pain it was bringing tears to my eyes. I admit to crying like a little kid, but it could not be helped. I have never in my life ever felt that kind of pain, which would lead me to stop eating. Suffering in silence.

Sometimes, like at work, people had no idea the pain I was in. I learned to suppress it even though I was suffering so bad. I’d clench my teeth or clench my fists while it passed, easily seeing my fingernail marks in my palms. Describing it to people, I would tell them to imagine an oncoming train with its whistle blowing. You can see and hear it in the distance heading towards you, that’s the beginning of the pain.

As it approaches and the whistle gets louder, that’s the pain becoming more intense. When it gets to you, the whistle is the loudest, and that is the most intense excruciating pain, lasting for a few minutes. Then, just like the train, the pain starts to subside just as if the train was getting farther away and the whistle starts to fade. Only to start all over again in about 5 minutes.

Always worse after I ate. Going on year after year. Prednisone helped, as well as Tylenol No. 3s, but it was always there. I was 19 when the pain started. I’m 53 now, and I still have never felt such pain.

So many varieties of pain

Along with this abdominal pain, sometimes at the same time, came the "secondary" flank pain from kidney stones. That pain is a close second to the abdominal pain. I have had these dozens and dozens of times, including kidney stones, stone removal, stent placement, and removal. Being a guy, I have no idea what the pain of childbirth feels like, but talking with women who have given birth and have had kidney stones, they tell me the pain is similar.

Fissures, fistulas, perianal abscesses, and muscle and joint pain are more "secondary" pains associated with my IBD. The abscesses are in a world of their own. That pain was literally a pain in the ass. The anxiety felt just LOOKING at a chair was intense. It was close to impossible to sit in a chair. Hospital visits to lance them were the norm, but surgery with stent placement was also common for me.

Finally pain-free with Crohn's...

The point I’m trying to make is that YES one day the pain can diminish to almost nothing. I realized last month that I had not felt any pain for over a year now. I had a permanent ileostomy and proctectomy in November 2020 and the abdominal pain has finally gone, and the perianal abscesses, fissures, and fistulas have stopped and so has the pain from them.

Hopefully, the pain stays away, fingers crossed. I can honestly say that I don’t remember a time in the last 34 years that I haven’t been in some sort of pain from my IBD. It’s a strange feeling, but a good feeling. I’m hoping to never have to deal with that kind of pain anymore. Fingers crossed, touch wood, rub that rabbit’s foot. Yes, dreams can come true.