Unless you have IBS, then you don’t understand

Since I was a child I have had problems with GI issues. In those days, when my parents took me to the doctor, they were told I had “balloon belly” and there was nothing that could be done.

Going to school with no control over bowel movements is no fun. I was bullied and physically assaulted by children, to the point I had to be supervised constantly by teachers to protect me.

I suffered from asthma and eczema as well, and my mother tried exclusion diets to try and get some relief. At one point I was on pumpkin, baby rice, and goat milk.

I have been to multiple doctors to try to find out what was wrong. For the past six years I have been told I have adhesions, intermittent intussusception, infections, cysts, polyps to name a few. I have been poked, prodded and tested, and six years ago was told I have IBS.

Diagnosis with marginal help

With this diagnosis I was given antispasmodics, which marginally help. I have tried mild antidepressants, also marginal help. In fact nothing I had from the medical profession has helped.

In the last six years I have been taken to hospital 20 times on morphine to control the pain.

It is the pain that for me is the worst symptom. I am in pain every single day. It goes from a dull ache on my left side at its best. Through to a pain which gradually increases to intense spasms in lower left abdomen radiating to pain in lower back in the kidney area. In some cases, I can be walking, and will get an intense stabbing pain which will stop me in my tracks, doubled over in agony, not able to walk.

The different types of pain, are not always attributed to a particular BM, food or anxiety level.

I have found through symptom tracking, that caffeine was a major trigger. Eliminating that has helped me. Then I found dairy was another major trigger. Cutting this from my diet has significantly reduced my trips to the hospital, but I still get the daily pain and symptoms.

IBS roller coaster

The bowel movement side of IBS for me is a roller coaster ride. I can go for days with regular BMs, but lots of gas, and still the pain. Then I can have constipation, which I can only describe as needing to pass a tennis ball. This constipation comes with intense pain, and long times on the toilet, with urges to push with nothing coming out. Once this “tennis ball” has finally passed, I then get diarrhea. This can be 15-20 times over the next 1-6 hours. Then I can go back to ‘normal’. But my normal is large BMs at least 1-3 times a day, with a burning sensation coupled with cramping just below belly button.

This disease has affected every aspect of my life. It has affected my ability to make friends, as I was isolated and bullied as a child. It affects my social life as I worry when eating out that something I eat will trigger an episode. It has affected my work when I need to spend hours in the bathroom. It has affected my finances due to the hefty medical bills.

Since my diagnosis, I have not found the doctors very helpful. I get platitudes and made to feel that my anxiety is causing the problem, rather than the problem making me anxious that I will soil myself in public.

I try my best to be upbeat, and not let this disease get me down, but it’s hard, so hard not too.

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