When Remission Still Doesn't Feel Quite Right

I would love it if remission meant I felt back to my normal self. The reality is that losing my colon has meant that my normal would always be a little different from my pre-diagnosis normal. However, it's more than just that.

I run a support group on Facebook, and it's plain to see that many others continue to experience symptoms to some extent, even when in remission!

UC symptoms in remission

Some of the most reported symptoms that people with IBD experience outside of remission are fatigue, the brain fog that comes along with it, and joint pain. All of these things can feel debilitating and have a big impact on quality of life.

Bowel habits may also never go back to the normal we once knew. Sometimes, our disease leaves us little reminders that it’s been there. In my head, I imagine "ulcerative colitis was here 2007" scrawled on the inside of my bowel wall... Plus many other dates it wants me to remember!

Things like surgery or scarring from previous disease activity can leave those lasting reminders that might change the frequency and consistency of our bowel habits. We might end up with nutritional deficiencies in things like iron, B12, and vitamin D. We might end up with bile acid malabsorption. We might end up with issues following medications such as prednisone/prednisolone, such as osteoporosis. The list truly does go on...

Why doesn't remission feel like my old "normal"?

It can be SO disappointing to find out that you’re in the remission you were striving for, but life doesn’t feel right. You don’t feel "well." The well you once knew, before diagnosis.

I remember my first remission well. It was after my first surgery, and I thought that the removal of my colon meant I was cured. I thought that because someone (a medical professional) in the hospital had told me that.

I went home, recovered, and moved out of my childhood home to start my new life. I remember being up a ladder, painting my new house when I first experienced severe pain in my rectum. It was brief, but I kept experiencing it. A few weeks later I contacted my IBD nurse. That was when I found out that the cause of the pain was likely my ulcerative colitis being active in my rectum. I hadn’t realized it was even a possibility before that.

Anyway, some mesalamine enemas and a short course of steroids set me right. A year after the first surgery I had my j-pouch created. Another short remission was followed by a flare. I had my j-pouch connected, but life continued in the same way. Remission, flare, remission, flare. In the end, they often felt the same.

Continuing ulcerative colitis symptoms

The frequency of toilet habits was all over the place most of the time. Chronic pain was experienced most of the time too. Was it scar tissue and strictures, or was it pouchitis? I never really knew. Surgeries followed by brief periods of remission were my life for a number of years.

Life regularly included mad dashes to the toilet, abdominal cramps, watching what I ate. I ended up having surgery to remove a stricture and abscess. After that surgery, night-time incontinence became a thing! There was a brief period of remission again, and then a new flare.

Pouchitis was never really controlled, so I ultimately had my j-pouch removed in 2018. I’ve been in remission since that surgery. I’m thrilled, of course, but, abdominal pain is still a regular thing. Fatigue is still a regular thing. Joint pain is still a regular thing. Fibromyalgia is now also a thing.

I can definitely confirm that my remission doesn’t have me feeling "well" like a healthy person!