I think it’s partly out of guilt that I decided to share this Facebook post – because I have been symptom-free for something like 15 years. I was diagnosed with Crohn’s disease in 1994, having been unwell for several years, but my last relapse was in 1996 and, although I felt discomfort in my stomach for several years after, it grew fainter and fainter, and eventually disappeared – bar the old brief twinge I still occasionally get and is probably something else, but which brings anxiety every time. I’m told Crohn’s is an incurable lifelong disease, so I understand it could come back, but I have been lucky for this past decade and a half.

I do know what it’s like to suffer the symptoms of Crohn’s disease. Back then, I would be fine one day,  then I would start to feel the twinges in my stomach and within a handful of hours I would be in agonising pain. I remember one time rolling around on the floor in agony and picking up the phone and ringing the hospital and begging them to send an ambulance and operate on me that night. (That was before I learned the joy of strong painkillers – of high doses of Co-Codamol to dull the pain.)

I know what it’s like to be sat on the toilet for hours, in pain, with vomit coming out of my mouth and diarrhoea from the other end … simultaneously. This is because my intestines would become swollen and blocked so food couldn’t get through. And, at the same time, my bowel was not absorbing liquid very well.

Apologies for that description being very graphic, but that is the reality of this horrible disease. Lots of people with Crohn’s carry spare underwear because, if they need to go to the toilet, they have to go immediately and that isn’t always possible. I was lucky that I never had this problem. But I can imagine how difficult that makes everyday life.

During relapses, food and eating were problematic, to say the least. I would be reduced to feeding on small amounts of semi-liquid or puréed food, but still not knowing if it would get through my intestines or whether I would suddenly feel the agonising pain in my stomach and have to rush to the toilet (see above).

I know what it is like to have abdominal surgery to have the diseased section of my small intestine removed. I felt the physical affects of having been cut open for years afterwards. This only happened to me once but, as you can read, many people with Crohn’s or colitis have to have operation after operation and end up having to use a stoma.

I remember being on strong doses of steroids and the impact they had on my body and mind. My face became bloated and I developed a gigantic appetite that could not be satiated, except with enormous amounts of food. We’re talking huge curries with all the trimmings. I put on quite a lot of weight when I was on the steroids, which didn’t help my confidence. The steroids also make me feel what I can only describe as fuzzy-headed and often feeling on the verge of rage. They didn’t work at all and I had my worst relapse when I was on the highest doses of prednisolone. That was frustrating – knowing that the supposedly best treatment is useless.

So … if you hear of someone who is suffering from this invisible disease, please understand what it is like. They may be have been fine one minute and very unwell the next, and then eventually they are “suddenly” absolutely fine again – Crohn’s relapses can end as quickly as they come on. But in between they can be suffering very greatly.

And please don’t spend any time posting any well wishes to me – I am in great health and don’t need them. Instead, consider sharing the post or the original article.

You can read more about Crohn’s disease on the NHS website.