The Unpredictability Of Ulcerative Colitis

One of the things that I have always found the hardest to deal with is the unpredictability of IBD. The feeling of having no control. Wanting to do more to help myself, but constantly having no results from whatever I tried.

Because IBD is often progressive, it's not abnormal to find that we have a totally new symptom. There’s a huge list of symptoms that someone with Crohn's disease or ulcerative colitis may experience, but if we get used to "our flares," it can still seem surprising when we get one which is out of the ordinary for us.

I remember being confident that I had the signs of imminent flare nailed. This was during my j-pouch years, so symptoms do differ a bit from those of Crohn's and colitis.

The signs of a flare with a j-pouch

After almost 7 years of constantly, actively, and passively monitoring my j-pouch's "ways," it threw me a curveball! I used to know a flare was coming because stool frequency and urgency would increase, and I would feel pressure and tenderness in my lower abdomen.

When I walked, I felt like I could actually feel my pouch moving inside me with each step, like I could feel the inflammation. Sometimes, something I ate may have caused some irritation, so I would normally leave it for a few days before taking any action, to see if it settled on its own.

I would try to help by eating things that I knew were really easy for my pouch to deal with. If symptoms persisted, I would arrange blood tests, drop off a stool sample, and let my IBD nurse know when they were done so that she could lookout for the results.

Often, by the time the results were back, I'd already be feeling a lot more uncomfortable and the shooting pains would have started. These pains are referred to as tenesmus and usually indicated inflammation in my rectal cuff, which is called cuffitis. I was NEVER wrong when I suspected a flare was coming – hence why I became confident in my ability to recognize it.

Increased gas and bleeding with a j-pouch

Then, one day, I noticed that I was experiencing a lot more bloating and wind than usual. I made a conscious effort to amend my diet in the coming weeks to no avail.

My lower abdomen didn't feel tender, and there was no increased frequency or urgency that would usually let me know that a flare was coming. If anything, I felt like I was going less in the day time. There had been no shooting pains either.

I had started to have some leakage at night, which I assumed was due to the increase in wind, and it attempting to escape at night while I was sleeping, as I had never been able to pass wind safely with my pouch.

I think it must have been at least a month later when the bleeding started. I have never experienced bleeding with my pouch, so I knew that it was time to contact my IBD team.

Tests confirmed pouchitis and the presence of ulcers (another thing that I had never had in my pouch in the past), which I was both relieved and annoyed about. I was relieved because there was a reason for the symptoms and I could now start treatment, but I was annoyed at my body for completely changing my symptoms in the first place.

Symptom changes and unpredictability

I am an admin of a group on Facebook, and people often ask if a symptom they are experiencing is typical of IBD. Based on my previous experience, I now always tell them that any change in bowel habits is worth letting their team know about.

As much as we may think we know what our normal symptoms are, the unpredictability of IBD definitely complicates things!