Unusual symptoms led to new diagnoses for Dave and Lynn

20 July 2021

There are lots of way for Crohn's and Colitis to present in different people, from the symptoms you get to the location of the disease.

Lynn and Dave tell us about their experiences with microscopic colitis and oesophageal Crohn's.

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I thought I was going mad.

Living with microscopic colitis

I have had diarrhoea for more than forty years and it has been a normal part of my everyday life. When I had scopes to investigate my diarrhoea nothing was showing up, so I kept on being told it was irritable bowel syndrome (IBS). 

Nobody would believe how bad it was and I was told more than once that it was all in my head. I thought I was going mad.

When my daughter was 16, we went to Kenya and I ended up being on the toilet with diarrhoea thirty times a day. It was so bad that I was hospitalised when I returned due to the dehydration and they put me on a liquid diet. Around a decade ago, I had to be operated on for bowel adhesions the gastroenterologist said: “Right, we’re going to start from the beginning and work out what’s going on.”

Microscopic Colitis can only be detected via a biopsy, under a microscope.

I had bone scans and biopsies and it was finally discovered I had Lymphocytic Colitis, which is a type of Microscopic Colitis where the colon walls are full of white blood cells. It’s subsequently been re-examined and diagnosed as Collagenous Colitis, where the lining of the colon develops a thicker than normal layer of collagen and gets quite stiff.

As well as diarrhoea I get terrible mouth ulcers and bowel adhesions, and I’ve had a fissure. This is a break in the bowel and when they were trying to repair it, they couldn’t get any instruments in. My anus had basically closed over because it was only water that I was passing all the time.

I try to manage as best I can.

Like many people with Crohn's or Colitis, I know where every toilet is. I’ve had to use my Can’t Wait Card a few times. I haven’t been able to work for a few years now. However, I haven’t been hospitalised in the last couple of years because I’ve finally found a drug that suits me. I want other people to know that they shouldn’t be fobbed off. It took a long while for my diagnosis but finally I felt I was listened to.

Microscopic Colitis affects the large bowel (colon and rectum). There are two main forms: Lymphocytic Colitis and Collagenous Colitis. The condition is called Microscopic Colitis because the inflammation of the bowel lining is only visible when tissue samples are viewed through a microscope. Out of 100,000 people, between one and 11 of them will develop Collagenous Colitis and between two and 19 will develop Lymphocytic Colitis.

I was diagnosed with Crohn’s when I was 23.

Living with Crohn's

My diagnosis took about a year to confirm and resulted in my first resection. I was then clear for three years before a hole was found in my small intestine. Food and body waste were going into my body cavity and this resulted in another resection.

It was only after that, in around 2004, that I started to notice I was choking on food quite regularly. I went out for a romantic meal with my wife at a posh restaurant and I choked on an omelette. I turned blue and dropped to the floor and had to rush to the toilet through a busy restaurant. There, I managed to make myself regurgitate the offending item. I then booked an appointment with my GP, who said it could be Crohn’s related.

After the usual bloods and endoscopy, I was diagnosed with Crohn’s in my throat, or Oesophageal Crohn’s.

I was placed on infliximab, which seemed to help, and was on that until my body built up antibodies against it and I moved onto Humira and mercaptopurine. However I’m still prone to mild choking sessions – caused by narrowing of the throat, the oesophageal scarring and active Crohn’s – and there seems to be no pattern to the food that triggers it.

Although I can go weeks without choking, I don’t like to eat alone now.

I cope with the choking sessions by either rubbing my throat to force the item down or sticking my fingers down my throat to regurgitate it. Obviously, this causes distress to my 13-year-old daughter, to me and to my colleagues when I collapse and turn blue, gasping for air. It has happened hundreds of times and I always have a sore throat.

My feeling is that I’ve got this and it’s bad but there are people with Crohn’s or Colitis a lot worse than me.

Crohn’s of the oesophagus is rare and usually affects people with the disease elsewhere in the body. Chronic inflammation and ulcers are the main symptoms, while some patients will have strictures or fistulas in the throat too. The oesophagus can become narrowed, causing choking and problems with swallowing.

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