Invisible symptoms

Many of the symptoms we experience with inflammatory bowel disease (IBD) are invisible. Joint pain and fatigue are the major players that spring to my mind!

Low levels of Iron, B12 and Vitamin D, plus the emotional impact such as anxiety, PTSD, and depression are all invisible too, but we feel them, don’t we?

Having my symptoms ignored

I began experiencing lower, right-sided abdominal pain in 2012, which got progressively worse over time. I had mentioned it frequently during my appointments with my IBD nurse, but it never seemed of interest. One time, when I had pushed the issue, she said: “It may just be something you have to live with.”

I would have found that much more acceptable if it had been investigated and there was nothing to be seen, but it wasn’t, so I continued taking painkillers every day to function and tried to accept that this may be my life now.

The lack of interest in my reported symptoms left me feeling deflated. I didn’t want a life on painkillers. When the pain got worse, I had gone on to stronger painkillers, so when I reported that I had also started vomiting, my IBD nurse said that the painkillers were probably the cause. I kept wondering if they weren’t investigating because they did not believe me. Did they think it was all in my head? Was it?

Accidentally finding the cause of symptoms

In 2014, after multiple treatment failures for pouchitis, I was due to start Infliximab. I had to have a pouchoscopy to verify active disease before I could start it. That pouchoscopy was particularly traumatic. I usually tolerated them well, but this one had been different. The pain was unreal. I remember giving myself a good bash in the face with the gas and air mouthpiece as I wiped a tear from my eye because it had literally made my eyes water! During that pouchoscopy, a stricture had been identified where my Jpouch joined my small intestine. This was the cause of the pain and meant that the scope couldn’t pass through. Further testing led to the discovery of two strictures (narrowings in the intestine); one short and one long, right next to each other.

Emergency surgery

A week later I was under the knife as the surgeon felt emergency surgery was necessary. It turned out that the short one was an abscess and the long one had been a twist in my intestine.

After the surgery, the surgeon said that he couldn’t understand how I was still walking around in such a state. The truth was, I didn’t realise I had a choice. By that time, I’d started to believe that maybe it was all in my head…

It sounds weird to say that it’s lucky that I had chronic pouchitis, but I believe it was. How much longer would the pain and vomiting have gone undiagnosed if I hadn’t needed that pouchoscopy to get funded for Infliximab? It’s not something I even want to think about!

This story obviously doesn’t cover the most common issues we might face with IBD (I have a fair few of those as well). But, reaching a point where you actually begin to believe that it may all be in your head is not so uncommon.

You are the only person that really knows what your normal feels like. If you believe that something isn’t right, push for investigations. Be your own advocate! I will certainly never just leave it ever again!