I quit work after Crohn's left me bedridden and unable to control my bowels

Dexter Ludeman, 37, a recruitment agent, has been bedridden with Crohn’s disease symptoms at times, needing to go to the toilet up to 20 times a day. He lives in Surrey with his wife, Anna, and their daughters, aged seven and four. In this frank account, he explains the reality of living with Crohn's and how surgery has helped to transform his life...

Everybody wants their wedding day to be perfect but for me, I was riddled with anxiety about having to run to the toilet during my speech or the first dance, and had to make sure I had a clear route to the Gents at all times.

About 15 years ago, I began to get really painful mouth ulcers and boils on my skin and was referred to hospital for tests. Then I began to get bowel-related symptoms.

I began noticing blood in my stool and having urgency – i.e. very suddenly needing to poo and having to rush to the toilet. Eventually, I had a colonoscopy and was diagnosed with Crohn’s disease in 2013.

What is Crohn’s?

Crohn’s is an auto-immune disease and can affect anywhere within the digestive tract, so from your mouth to your bum, basically!

Although the inflammation is going on in your gut, your whole body fights itself, leading to many other complications.

I had arthritis in my wrists, knees, ankles and lower back, to the point that I was bedridden it was so painful. My eyes would swell and go blood-shot.

If I got a cold or any other illness, it seemed to trigger my Crohns. I’d feel completely wiped out with a flare-up; the exhaustion was overwhelming. I’d get night sweats and also became anaemic due to passing blood in my stools.

For the first year or so after diagnosis and before my first operation, when I was trying to manage my Crohn’s with drugs, I was in a permanent flare-up.

Daily challenges

At its worst, I had almost no control over my bowels and was having to go to the toilet over 20 times a day and through the night. I went from 12.5 stone (79kg) to 10 (63kg) because I wasn’t absorbing any nutrients.

I was working as an estate agent at the time and almost overnight, my job became impossible.

Early morning meetings were the worst, because that’s when the symptoms are most severe. Sitting there and trying to take a meeting, or listen to people when you need to dash to the toilet, or having to do viewings and not be near a toilet, was horrible.

I had to tell my bosses I was being treated for Crohn’s but neither they, nor I, knew much about it and so although they tried to help, they were ultimately expecting something from me I couldn’t deliver.

In the end, I had to quit my job and set up as an estate agent on my own, where I had more flexibility.

A hidden disease

People with Crohn's or other inflammatory bowel disease (for example, Colitis), often look normal on the outside, so people don’t understand that it’s not just that you’ve got a bit of diarrhoea or a dodgy stomach, it’s a life-limiting condition.

You have to manage the stress of your symptoms, along with the stress of the ignorance and stigma. Because there’s not much funding or support, you can feel lost.

If someone says they have cancer, people say, "I’m so sorry, that’s terrible." Whereas if you say you have Crohn’s people say, "What’s that? Is it an ailment? Is it like IBS?"

You can’t die from Crohn's, but it is a chronic, incurable disease and you are at higher risk of things like bowel cancer.

Wedding day

For my wedding in May 2015, I was on strong steroids to get me through the day which made my face swollen so I was worried about the pictures.

It was a big day for Anna too, so I felt huge pressure to be ok, but the reality is that although the medication did manage my symptoms to an extent and it was an amazing day, I was still in and out of the toilet all day, and feeling pretty unwell.

My worst bout was just after the wedding. One night, I passed so much blood in my stools that my wife, Anna, and my father-in-law had to take me to A&E in the middle of the night.

Major surgery

That was when I got on the list for colostomy surgery. I’ve had two operations: the first, in 2015, was an ostomy operation where they attached my re-sectioned large colon to a stoma (opening in my stomach) from which to pass stools, instead of through the inflamed and infected bowel and rectum.

It meant I had to have a colostomy bag, which I had to change each time I had a bowel movement. This was a big, overwhelming change to get used to. I still feel overwhelmed by it at times. But to be honest, I was so desperate by then for something to control my symptoms, that I was glad to have the operation.

And although there were problems, such as there being no bins in the Gents to put the used bag, this operation was a turning point for me. Every day from then was better, because my symptoms were under control.

For the next 10 years, life was good. Anna and I had two beautiful girls and our careers took off. Seeing what I had gone through, Anna set up Valued Recruitment during the pandemic – a recruitment agency for people who need more flexibility and support at work. For example, people with hidden conditions or disabilities such as Crohn’s. It turns out there was a huge need for this.

For some people, having to wear a colostomy bag affects their relationship, but I’ve been lucky with Anna, who has always been incredibly supportive.

Affecting my confidence

I’ve never been that body-conscious, so I didn’t dwell on the physical changes to my body so much. Having to adapt to a new version of you, with new limitations, does knock your confidence, though.

Crohn’s has definitely had a negative effect on my career and confidence at work. You have to take a lot of time off for hospital appointments and operations, and you also have to deal with often not feeling yourself.

Before Crohn's, I was definitely more spontaneous and go-getting, I’d be up for anything.

Now I have to be more cautious. It’s frustrating, because I want to be an active dad and ambitious at work, but I have to accept there are some things I can’t do.

Ultimately, I have adapted, but not being able to be the person I want to be, has made me feel low at times.

A better future

Currently, I am having to adapt again, as I’ve recently had another operation. With my first op, the part of my bowel that was infected was left in there in case the disease could be managed and there was a possibility of reconnecting the colon.

In the end, however, it was too far gone and I was still getting Crohn's symptoms. So, in September last year, I opted to have a total proctocolectomy with Ileostomy. This means, I had my colon and rectum removed which was very diseased, and then had an 'ileostomy stoma' formed, where part of your small intestine is pulled through your abdomen to make an opening to eliminate waste into a colostomy bag.

I also had my large colon moved to prevent the risk of cancer in the future.

This last operation means the stool is looser and more frequent because food waste is not going through the whole intestine. Also, water is not being absorbed by the large colon (which is the only function it has and why you can live without it) so I have to be careful to drink plenty.

Now, I have a drainable bag, rather than one I have to chuck away every time I have a bowel movement. I’m a bit immobilised at the moment as I’m recovering from the surgery and getting used to the new stoma, but I know the frustration is just temporary.

Ultimately, I have to think how much better my life will be when I get used to this: not having to worry about changing the bag all the time, not getting the Crohn’s symptoms.

I’m looking forward to just getting on with life now. In 2021, I gave up my estate agency business and joined Anna as co-director at the recruitment agency. I can bring that lived experience of needing more support and flexibility in the workplace because of a hidden illness. Most of all, it’s great to be on the same mission as my wife, and to be working together to try and change things.

For information and support, visit the charity Crohn's and Colitis UK.