What is tenusmus, and how does it feel?

Tenesmus can feel slightly different for everyone, but in general, it’s the physical sensation of needing to pass stool, even when your bowel is empty.

You might pass a little, but it’s often far less than you’d expect given how urgently you felt the need to go. This is why tenesmus is sometimes described as an incomplete bowel movement. For someone experiencing tenesmus, this often means multiple small bowel movements throughout the day, each with a sense of urgency. It’s not uncommon to finish up, clean up, and then feel the need to sit right back down on the toilet!

The pain associated with tenesmus can vary widely. For some, it’s sharp and stabbing, while for others, it’s more of a dull ache, throbbing, or cramping sensation.

My first encounter with tenesmus (and proctitis?)

My first experience with tenesmus was about six months post-surgery. I was up a ladder, painting a wall in my new home, when I suddenly felt a sharp, shooting pain up my bum. This was a surprise as I’d not really had any sensation there since surgery, aside from the occasional urge to sit on the toilet to pass mucus.

The passing of mucus following ostomy surgery is a natural phenomenon. Your intestine and rectum create mucus to lubricate the bowel, making it easier for the stool to pass through. The rectum has no idea it’s been disconnected, so it continues to create mucous.

After the initial shooting pain, I began feeling a cramping sensation and an urgent need to rush to the toilet. But when I got there, nothing. Not even the usual mucus I’d pass every few days. The sensation passed, so I went back to painting, but the cycle kept repeating. A few days later, I noticed that the mucus I was passing was streaked with blood.

My doctor suspected proctitis. A quick Google search told me that proctitis often presents with tenesmus as a main symptom. Proctitis simply means inflammation of the rectum, which is common in both ulcerative colitis and Crohn’s disease. I hadn’t realised this could happen after the rectum was disconnected!

Treating tenesmus and proctitis with enemas

Since I had no symptoms elsewhere in my intestines, my doctor recommended topical treatment, meaning I had to administer medication rectally. I started with mesalazine suppositories, but when those didn’t help, I switched to mesalazine foam enemas. After about two months, my symptoms cleared up, and I stopped using the enemas.

Three weeks later, my symptoms came back. I didn’t know I was supposed to continue using the enemas to keep things under control. Once I resumed the treatment, my symptoms settled down again, and I was able to switch to using the enemas every other night instead of nightly. We agreed that if the symptoms returned, I’d go back to nightly use.

I continued this routine until I had surgery to create my Jpouch. Later, I dealt with cuffitis, which is basically the Jpouch version of proctitis; inflammation affects the rectal cuff left behind during Jpouch surgery. The symptoms and treatment were the same, with the addition of steroid enemas later on.

If symptoms cannot be controlled with rectal treatments, different medications used to treat inflammatory bowel disease must be considered.