I experienced a lot of problems from childhood.
Rosemary
Living with Colitis
I had a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) which made me prone to fainting and also got horrendous pains in my legs. These were often dismissed as growing pains. I also sprained easily and had, the very worst for me, slow healing. When I was 8, I fell off my bike and was under the hospital for months because broken glass went through my elbow, and it would not heal.
Then, aged 59, I had an appointment with my cardiologist, and he was very worried that I had lost two stone in weight. He asked me to go and see a gastroenterologist who referred me to a rheumatologist and that’s where I received a confirmed diagnosis of Hypermobile Ehlers-Danlos syndrome (H-EDS). Now under three specialists, it was in 2010 that I had six months of proctitis symptoms, and this led to my Ulcerative Colitis diagnosis too.
Of course, once I had my diagnosis, I found out that my childhood experiences were common in others with these conditions.
So, I suddenly found myself trying to get to grips with H-EDS at the same time as being thrust into a long Colitis flare-up. It was not a good time. I found great support groups on Facebook, and we have been a great help and support to each other ever since.
I’m allergic to mesalazine, which I was on for the Colitis initially, and then found that I am, in fact, allergic to many of the drugs commonly used to treat Crohn’s and Colitis. The good thing is I now know why I had so many problems, after wondering for so many years. I’m also now on tofacitinib which has been a life saver and brought me out of a terrible flare.
I'm very aware of the possible problems I could face if I need any surgery at all for my Colitis.
The slow healing caused by H-EDS means everything is going to take much longer than normal to heal. It is frustrating to have these extra problems and it means I have always had complications following surgery. Because of my slow healing, I would be very worried about this and would prefer to avoid it, but it is always a possibility and can be lifesaving.
I’m very open about my conditions and I have found that anyone I have spoken to about it has been very supportive. No explanations are needed for family and friends who have seen me in severe agony during a flare. I have been lucky and attended a very good pain management course for my H-EDS symptoms, which I was referred to after a second Colitis flare.
When it comes to living with Crohn’s or Colitis, alongside another condition, I would say that knowledge is power.
- Find out as much as you can about your conditions and join online groups, if that’s your thing.
- Be open to the idea of helping with research. If you can help, the more we know, the better.
- Have knowledge on hand to help your family to help you.
- Talk to people in organisations such as Crohn’s & Colitis UK.
Many people with Crohn’s or Colitis live with other conditions, just like Rosemary. The IBD Standards 2019, developed by members of the Crohn’s and Colitis community, define what good care should look like. They recommend that people with Crohn’s and Colitis should have access to high quality personalised care that meets their individual needs, including the treatment and management of other conditions. In 2019 the IBD UK patient survey found that there are not enough specialists, dietitians and psychologists, and care is often not joined up between services. Only 48% of those responding to the Patient Survey felt their care was coordinated with other specialist services. For more information read the IBD UK report and support our e-action to MPs calling for #BetterIBDCare.
