Sarah’s Story – Microscopic Colitis
"It took eight years to get the correct diagnosis. For eight years, I struggled alone with my symptoms. Mentally, it was really tough."
Tell us a little about you
I’m Sarah and I’m 49 years old. I live on the outskirts of Nottingham with my husband and two children, aged ten and eight and work as a Project and Communications Officer. When I’m not working, I’m “Mum’s taxi” and I enjoy spending time with family and friends and trying to keep fit with a good old walk.
When did your symptoms begin?
I battled with symptoms for seven years before receiving my microscopic colitis diagnosis.
In 2017, around eighteen months after our youngest was born, I started experiencing stomach pain, urgency to go to the toilet, and a lot of wind. Often, I’d pass mucus but not much stool. Then other times, I’d have watery diarrhoea. At the same time, I was having gynaecological issues, so it was assumed the bowel problems were linked to that. I also experienced joint pains and still do. At my worst, toilet trips have been nine to ten times daily and as a result, I lost a lot of weight. It got to the point where I didn’t go out. I felt embarrassed.
Talk us through your diagnosis
During lockdown, I spoke to one consultant over the phone. They arranged for an endoscopy and colonoscopy, which came back normal. I found this hard as no face-to-face conversations took place because of the Covid restrictions, so I never felt able to properly discuss my symptoms with the consultant.
I received a diagnosis of eosinophilic oesophagitis and was told that eliminating foods to find triggers was the best cause of action. But it didn’t matter what I ate the symptoms didn’t get any better, so I knew something was amiss. My parents and husband have a medical background too, which encouraged me to keep asking for help.
I persevered and spoke to another consultant, who repeated camera tests and took more biopsies. One of the biopsies showed microscopic colitis. In January 2023, I was diagnosed with microscopic colitis.
It took eight years to get the correct diagnosis. For eight years, I struggled alone with my symptoms. Mentally, it was really tough.
Talk us through your treatment
After my first dose of gut-specific steroids, I had several weeks without symptoms then they returned. I finished my second course of steroids in January, each course being 12 weeks each with a gap in between. I feel like things have settled down but I’m experiencing a “new normal” for me. Sometimes I wonder if I feel fatigued because of my diagnosis, because I’m a busy, working mum or both. I feel apprehensive about my symptoms returning as I’ve been told that the next treatment for me will need to be immunosuppressants. I don’t feel keen on this, so I’m trying to manage my symptoms by doing things such as watching what I eat.
How are you doing now?
I’ve cut back on caffeine and alcohol and foods I can’t tolerate without pain. I’m currently in remission but I’m still trying to navigate my diagnosis and adjust to what it means for me going forward. I’ve got another call with my consultant soon. Last year for me was about coming to terms with the diagnosis, mentally more than anything. This year I want to raise awareness of this lesser-known and researched colitis.
What’s one thing you wish other people knew about microscopic colitis?
Like other illnesses, it’s not a “one size fits all”. Symptoms and tolerances vary and it’s important to remember this. Also, if you know something’s not right with your body, it’s vital to keep going back to your doctor and asking for help.
What information do you wish you’d received sooner on microscopic colitis?
I feel that information on my condition is very limited. When you Google microscopic colitis, no significant research comes up, just topline information. There is always a lot more research for Crohn’s disease and ulcerative colitis.
What advice would you give to others struggling?
I’m a big believer in helping yourself. Keeping a food and symptoms diary has really helped me. I’ve literally documented everything from food I’ve eaten, to how many toilet trips I’ve had, symptoms and accidents I’ve had from not getting to the toilet on time. I handed this to my consultant and asked him to help me. You’re not on your own.
Why are you sharing your story today?
Microscopic colitis is an inflammatory bowel disease too and it’s vital more awareness is raised, and research is done. The impact this condition has on people and their loved ones is very real and widespread. I don’t want anyone to feel alone and it’s vital we reduce stigmas around bowel habits, I don’t want others to feel as embarrassed as I have, about needing to use a toilet in public.
