Coping with my MS related bowel problems

January 26 2018

Suffering from MS related bowel problems might feel hopeless, but don't give up just yet. We talked to Kerry who spent hours and hours in the bathroom due to constipation, before she found her therapy. 

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Bowel function is controlled by the nervous system. Sometimes Multiple Sclerosis (MS) affects the nerve paths to the bowels, which may lead to various bowel disorders, in Kerry’s case: constipation. Her story contains a lot of frustration, but also a lot of hope. This is the first part of Kerry's story.

Kerry and the Multiple Sclerosis

Kerry Lloyd is 46 years old and a mother of two wonderful daughters. She’s been with her partner David for over 30 years. 12 years ago she was diagnosed with MS, which affects her eyes, bowels, mobility and causes fatigue. 

– One of my first symptoms was blacking out, collapsing for no apparent reason, and had a tingly right foot, which can be a symptom of many other conditions as well. So it’s a case of ruling out many symptoms before you're given a diagnosis of MS.

Kerry had an MRI scan and nerve pathway tests done. And when she went back to see the neurologist, she was shaken.

They showed me an image of lesions on the brain, which was quite scary. And it's the scarring, the intermittent swelling that I was having unknown to myself at the time that blocks the passage of the nerve pathways, manifesting as the symptoms I experience.

Symptoms

Having MS was very difficult for Kerry in the early years. She had to learn how to live with a condition that was incurable. One of the first symptoms she developed was double vision.

In fact, it was very scary waking up in the morning and being faced with two handles to the toilet door. I almost felt quite drunk eating my breakfast some days…

She also started having bowel problems, constipation mainly, which in turn caused bloatedness, flatulence and pain.

– I couldn't sit down some days because it was just too painful. And having poor mobility, I couldn't stand up for prolonged periods either. And I just didn't want to eat. I felt so frustrated some days. I've actually sat on the loo and felt: "Fetch me the garden hose!"

Fatigue

Fatigue was another symptom and that affected not only Kerry, but her family as well. Her children couldn’t fully understand why their mother was tired all the time. They just wanted to hang out with her, go to the cinema or a go on a bike ride together.

 That wasn't doable most of the time. It's almost like I can sit doing nothing, but I feel like I've been running around the garden for several hours. But how can you expect your child to understand a medical condition that you don’t truly understand yourself?

Family life with MS

At the time, one child was a teenager and the other was turning into a teenager and it was difficult, because Kerry felt that her MS impacted upon their life as well. She felt that it was unfair on them to have to debate certain issues because of the fatigue. Travels for example.

 We couldn't pre-book a holiday because I wasn’t sure how I was going to be that particular week. Would I be able to jump on an airplane or go on a seven-hour car journey? And risk that when we arrived there, I would have to go to bed for the evening and feel absolutely terrible the next day. Would I feel too tired to enjoy things, to even laugh and joke?

– I felt quite selfish, because I was constantly thinking about myself and how I felt, what I was going to eat, the pain I was in, because it just really took over my life in every aspect for a couple of years. And looking back, that was a very, very terrible time in all our lives as a family unit.

It put pressure on so much of our lives as a family. Who would think that constipation could do that? And I never put that down to a symptom of my MS.

 


Stay put for next part of Kerry's story. It's about how she found her bowel therapy, and was able to begin a new life. 

Download the MS and continence guide

 

Topics: Bowel dysfunction, Multiple Sklerose (MS)