person with small storm in their head and larger storms outside

Is it all in my head?

Many of the symptoms we experience with IBD are invisible – joint pain and fatigue being 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?

My worsening symptoms

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 something you may 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.

Feelings dismissed by doctors and nurses

The lack of interest in my reported symptoms left me feeling deflated. I didn’t want a life on painkillers. When the pain had 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?

In 2014, after multiple medication failures for pouchitis, I was due to start Infliximab, but I had to have a pouchoscopy to verify active disease before I could start it. That pouchoscopy was particularly traumatic. I usually tolerated them pretty 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 j-pouch joined my small intestine, which was too narrow for the camera to pass through.

This all led to emergency surgery

Further testing led to the discovery of two strictures (narrowing’s in the intestine); one small and one long, right next to each other. A week later I was under the knife as the surgeon felt emergency surgery was necessary.

It turned out that the short one had been an abscess and the long one had been a twist in my intestine. After the surgery, the surgeon had said that he couldn’t understand how I was still walking around in such a state, but the truth was, by that time, I really had started to believe that maybe it was all in my head.

If you feel something isn't right, it probably isn't

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

So, my story may not be about the most common issues we have 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.

The moral of the story? Be your own advocate! You are the only one that really knows what your “normal” feels like, so if you believe that something isn’t right, push for investigations. I will certainly never just leave it ever again!

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