Reaching for Remission... Right?
Remission is what most people with IBD are striving for. It's also what our healthcare team is striving for, for us. However, what that actually means can be really confusing!
I'm going to talk about the types of remission, and what that might actually look like for people with ulcerative colitis or Crohn's. Terminology is often not very clear. I can’t even promise that the terminology for types of remission is what your doctor would call it. It varies!
Types of remission for Crohn's and UC
First up is biochemical, or biomarker remission, which simply means that standard blood and stool samples do not show signs of active inflammation. However, these tests aren't indicative of what's really going on for a number of people with IBD. Results might come back "within normal range," whilst people are experiencing symptoms, and a flare might be later identified during further diagnostics.
People with IBD often believe they are in remission when the symptoms they were experiencing during a flare are under control (completely or almost gone). This is generally called clinical remission. Not experiencing those symptoms anymore can drastically improve our quality of life, which is obviously very important to us. Our consultants don't usually agree until mucosal healing is confirmed. This means that no signs of disease were found during a scope. This might also be referred to as deep healing, deep remission, or endoscopic remission.
Next up, histologic remission! This is when biopsies also confirm that there’s no active inflammation on a microscopic level. At this point, people will usually (hopefully) feel generally well. And finally, there’s surgical remission. This is when surgery has led to a reduction in symptoms, to the point where no, or little inflammation is in the digestive system.
I often see people with IBD who are confused because they've been told they are flaring, but they feel fine. So they question whether treatment is needed. I totally get it. When you weigh up the possible side effect risk and disruption to your life when you actually feel fine at the time, it can feel like it's unnecessary. But, inflammation increases the risk of colon cancer and future flares, so it's important to reduce it as soon as possible.
For me, disease progression has always been fast, and that's what sticks in my head when people question whether they should start treatment. One day I was plodding along doing just fine. I went from first symptoms to being under the knife in just under 3 weeks, because my entire colon and rectum were inflamed to a point that they were beyond saving. It scares me to think of that being the case for someone else, especially when it could have been prevented.
I think we often expect remission to mean feeling like our old normal, but a lot of us don't get there, and will never get there. When you have had part of your intestine removed, toilet trips are often more frequent and loose, and it brings with it the risk of scar tissue/adhesions over time, which may impact what you can eat.
Remission does not look the same for everyone!
What IBD remission looks like for me
My last surgery in 2018 meant no more active inflammation in my intestine! Hooray! Surgical remission! However, I’ve been diagnosed with secondary fibromyalgia as a result. I experience widespread pain on a daily basis. Every time I've been in remission, including this one, I've still experienced joint pain, chronic fatigue, and the dermatological issues that were linked to IBD.
After surgery, I continued to have symptoms like abdominal cramps, some of which were better controlled when I was prescribed omeprazole, an acid reducer. I was later prescribed buscopan, an antispasmodic, which reduced the cramps further, but not altogether. As time has passed, more and more foods have started to make me uncomfortable after eating. It’s been the same after every surgery, as the scar tissue has started to build up.
So, for me, remission still involves daily pain, fatigue, lots of toilet trips, and loose stool. I live with an ostomy now, so frequent loose stools is my norm. It was also my norm when living with a J-pouch. It was basically the same, only the storage area was in a different place, attached to my anus/on my abdomen.
You can be in the best possible remission, and still have to face moving forward with a new version of normal. As usual, we make changes. We adapt. Because what else can we do?
How open are you about being diagnosed with IBD?