What’s It Like to Experience Tenesmus With IBD?

The first time I experienced tenesmus, my bowel wasn't even connected to my butt! Go figure?! Actually, it’s not that complicated. I only had my colon for less than a week after my ulcerative colitis diagnosis, and my diagnosis was just 2 weeks after my first symptoms. Tenesmus may have been involved in those first symptoms, but I'm pretty sure that every time I went to the toilet, plenty came out! That said, my memory is a bit hazy because I was so weak and unwell.

What does tenesmus feel like?

Tenesmus might feel a little different for different people, but generally, it presents as the physical sensation of needing to pass stool, even when you are empty. You might pass a little bit of stool, but not the amount you expected when you felt the sensation of needing to go. This is why it's sometimes referred to as an incomplete bowel movement.

This might mean that a person who is experiencing tenesmus has multiple small bowel movements throughout the day, often with a sense of urgency. It’s not uncommon to finish, wipe, wash, and then feel the need to sit straight back on the toilet!

Tenesmus can cause a variety of different pains which vary from person to person. It might be sharp, stabbing, or shooting. It can also feel more like a dull ache, throbbing, or cramping.

My first tenesmus (and proctitis?) with ulcerative colitis

I was actually up a ladder at the time, painting a wall in my new home. I’d had surgery about 6 months prior. Initially, I had a sharp, shooting pain up my bum. This was obviously a surprise as I'd not really had any sensation there since surgery, other than a warning when I needed to sit on the toilet to pass mucous. Passing mucous from a currently unused rectum is a natural occurrence. Your intestine and rectum create mucous as part of a natural process to lubricate the bowel to make it easier for the stool to pass through. The rectum has no idea that it’s been disconnected, so it continues to create mucous.

After the shooting pain came the cramping, and an urgent need to run to the toilet. Nothing. Not even the standard mucous I usually passed every few days. The feeling passed pretty quickly and I went back to painting. However, it kept returning. A few days in, I noticed that the mucous I was passing was streaked with blood.

The doctor suspected proctitis. I was in shock. A quick Google revealed that proctitis does generally present with tenesmus being the main symptom! Proctitis is simply inflammation in the rectum, which is typical in UC and Crohn’s. I didn’t even realise that could happen once it had been disconnected!

Treating my tenesmus and proctitis with enemas

If there are no symptoms present in the rest of the intestine, topical application is preferred. This means having to administer medication rectally. First, I was given mesalazine suppositories. There was no improvement, so I was prescribed mesalazine foam enemas instead. Once the symptoms had completely cleared up, after about 2 months, I stopped using them.

Three weeks later, my symptoms returned. I hadn't realised I was supposed to continue using them to keep it under control. I started the enemas again, and once things were back under control, I was allowed to administer them every other night rather than every night. This was with the agreement that if I ever felt like it was coming back, I would increase it to every night again.

I continued using them until I had surgery to create my J-pouch. I later experienced the J-pouch version of proctitis: cuffitis. This is when the rectal cuff, which is left behind in J-pouch surgery, becomes inflamed. The symptoms were the same as before, and the treatment was the same, too.

Other treatments for tenesmus can include prednisone or budesonide suppositories or enemas. If the inflammation cannot be controlled topically, then the other treatments used to treat IBD come into play!