My symptoms started during pregnancy, but I was told a coloscopy wouldn’t be done while I was pregnant. When it was investigated after Beau's birth they found mild proctitis, meaning it only affected my rectum. I was prescribed mesalazine tablets and monitored every 6 months at hospital.
The symptoms were mild and never really went away.
Emma
Living with Colitis
They were always there niggling away, but I really didn’t appreciate how serious Colitis is and didn’t take care of myself properly at all. I missed doses of my medication, I was eating the wrong things for my body, and probably drinking too much. I generally had a very ‘it will all go away on its own' approach to my diagnosis.
A couple of years later I had my second child, Skye, and after she was born I had a bad flare-up. From that point, things just seemed to progress quite quickly.
It felt like I was in a constant flare. I don’t think I had any ‘normal days’ between 2011 and 2015 when I ended up housebound and had to leave my job as a lecturer.
My colleagues at the time didn’t know the extent of the troubles I was having.
They knew I had Colitis but were not aware of how much I was struggling. I worried that it would make them look at me differently, stop relying on me for things and overlook me when it came to promotion.
Eventually I felt I had to admit defeat and was signed off work sick. My colleagues were so supportive and so patient with me. They were all hoping I’d be able to return to work, but it just wasn’t to be.
Being so poorly led to such a traumatic time in my last few months of teaching. I had to put plans in place to remove the stress of teaching from my life. I knew I couldn’t continue teaching and travelling such long distances to my place of work, and the stress that came with that.
By this point I had been told my proctitis had developed into pancolitis, meaning the inflammation was throughout the large bowel.
I tried a variety of treatments including adalimumab injections which I gave myself at home. Sadly, this drug didn’t work for me and left me with terrible sun sensitivity. I was then offered infusions every few weeks in hospital, to see if vedolizumab would help. My bowel symptoms improved slightly.
I was spending less time on the toilet, but I had developed erythema nodosum (EN) and rheumatoid arthritis which became more and more apparent during this time. EN is a painful inflammatory skin condition which affected my legs and I decided I just couldn’t continue like that.
I asked for a referral to the surgical team and when I was referred for a colectomy, to have my bowel removed, I was actually really relieved. I was ready to get on with my life!
Around the same time I spoke with my friend Beth, who has a health food shop named Glossop Wholefoods. She recommended I try probiotics as some people with Ulcerative Colitis had found them beneficial in treating their symptoms.
I had nothing to lose so I gave probiotics a try and within 6 weeks, I could feel the difference.
Slowly but surely, they were working for me alongside a plant-based diet. Within a month or two, I felt well again, and my symptoms had stopped . After a colonoscopy carried out by my prospective colorectal surgeon, I was classed as ‘in remission’ for the first time in ten years and the surgery was cancelled.
This combination of probiotics and a plant-based diet works to control my symptoms and I also practice cold water therapy, yoga, and meditation to maintain wellness.
It’s impossible to compare life now with how it was during the worst of my flares. I missed out on so much, including precious time when my children were growing up that I can’t get back. Now, I can appreciate every single minute and, more importantly, join in with the fun!
It’s so important to try to remain positive.
I understand how challenging that is at times but even on the worst days I had to believe things would get better.
I believe there is a treatment path out there for each of us whether that’s surgical, pharmaceutical, or alternative. It could be a combination of them all. I feel so lucky to have found mine, I just hope it continues to work as well as it is now for a very long time.
Eventually, I was well enough to return to work full time, and I was able to restart my career at a marketing company, which I love. I am so grateful to my employers for taking that chance on me.
It’s such a daunting decision to have to make, to leave a well-paid career and start afresh. But, with the support of my husband Matt and my wonderful family, it’s been the best decision I could have made.
The information in this blog is based on Emma's own personal views and experience and does not reflect the views of Crohn's & Colitis UK. You should consult your IBD Team before making changes to your diet, treatment or lifestyle. For more information on probiotics, see other treatments.
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