I am Rachel, a 30-something busy Mum of 2, part-time accountant and am well-used to life with a chronic illness as I have been living with Type 1 diabetes for nearly 30 years. I have an 11 yearold food-allergic daughter, G and a nearly 9 year-old EGID and multiple food-allergic son, M.
Following M’s diagnosis with EC, I started writing a blog about our journey and am currently the editor for the FABED (Families Affected By Eosinophilic Disorders) newsletter. In the little spare time I have, I love singing, reading and curling up in front of the fire with the cats. And travelling, I love to travel!
What is Eosinophilic Colitis?
Eosinophilic Colitis (EC) is another lesser-known member of the EGID (Eosinophilic GastroIntestinal Disorders) family. As in EoE, the white blood cells attack an infection or allergic reaction in the body, but rather than stopping once the infection has been dealt with, the immune system continues to produce new eosinophils, which attack the colon – the lower portion of the large intestine – instead. EC is a relatively rare type of colitis, which leads to inflammation and eventual loss of healthy tissue.
What symptoms distinguish EC from other conditions?
There are several symptoms linked to EGID, but those most commonly linked to EC are diarrhoea, abdominal pain, blood and/or mucous in the stools and failure to thrive.
We found that M suffered with a number of these symptoms over the years, but it was only as I read more about EGID that I was able to link the symptoms together. He has had almost constant diarrhoea since he was a baby and there were huge amounts of mucous in his stools. Even when he was tiny, he was a sweaty baby and had an incredibly distinctive body odour that we just couldn’t explain. Add to that his low body weight, joint and stomach pains, massive mood swings, sleep issues and ever-present “allergic shiners” around his eyes and I think he ticked most of the boxes!
Tell us about your road to diagnosis
It took us 7 years to finally get a diagnosis for M and a lot of time travelling to Great Ormond Street Hospital (GOSH) from our home in the South West. Despite raising our concerns with our GP when M was just 9 months old, we were sent from pillar to post with a diagnosis of “Toddler Tummy” hanging over our heads and the label of “neurotic mother” almost definitely attached to me.
The final straw came when our local Children’s Hospital refused to perform an investigative colonoscopy on the grounds it was a cruel and unnecessary procedure to put our 5 year old through. Our wonderful new GP offered to refer us anywhere in the country and my husband researched and found a gastro consultant at GOSH who was prepared to see M. She identified that there was problem during our very first appointment and immediately suggested we start him on a MEWS-free (Milk, Egg, Wheat, Soya) diet for an initial 12 weeks period to see if that helped.
The consultant knew that he was suffering from some form of Inflammatory Bowel Disease (IBD) and was leaning towards Crohns disease, but by this point, I had done my own research and was convinced that he had some form of EGID. Although we saw some improvement of his symptoms on the restricted diet, it was not enough to make any of us happy and took another 18 months and an endoscopy and colonoscopy before a diagnosis was made. M had a high level of eosinophils in his colon as well as excessive damage caused by the chronic nature of EC.
How is your child’s condition managed?
Like most forms of IBD, EC is a chronic waxing and waning disease, which means that there are periods of improved health as well as times of extreme relapses. Since M was first seen at GOSH, we have gradually had to restrict his diet more and more alongside increasing the number of medicines he takes.
Last summer was our hardest as M was avoiding 8 foods – MEWS plus potatoes, raspberries, gluten, raisins and oranges – as well as taking 10 medicines daily, which included antihistamines, anti-allergies, anti-inflammatories, mast cell stabilisers, laxatives, supplements and reflux medication.
This approach had started to heal M’s insides, but he was still highly symptomatic, so just before Christmas, we made the decision to move him to an Elemental diet only, which means that he is currently fed this specialised feed via NG-tube. His symptoms have already improved, so our next step will be to slowly reintroduce foods to his diet so that we can identify all that he is allergic to, hopefully without triggering a flare of his EC.
What would you like to say to a parent seeking diagnosis?
Listen to your heart, follow your gut instinct and keep fighting until you start getting some answers. I had known that there was a problem with M since he was tiny and it was only my persistence and insistence that doctors listen that got us to the final diagnosis. Don’t be scared to ask for a referral to somewhere like GOSH if you honestly believe that’s where your child needs to be. I associated GOSH with extremely sick children and couldn’t imagine being there with M, who lives his life to the full despite his chronic illness. Now I know that he has this rare condition, I would take him anywhere in the world to get him the treatment and help he deserves.
Can you suggest some useful links and resources?
For help and information re EC and EGIDs in general:
For feeding tube help: