Managing Ulcerative Colitis: My Personal Journey and Strategies for Chronic Illness Control
The most frequently asked question I get when people find out I have ulcerative colitis, if either they or someone close to them has Crohns or Colitis, is 'what have I found that works for me?'. So I'll try to answer it as succinctly as I can here. Obviously, nothing I write here is actual medical advice, just what I've found has helped me but it might give someone ideas if they are at a dead end or just starting out.
I have written a much longer account of my history living with chronic illness and working in the film industry, for anyone wanting to know here.
Fundamentally, I've found a number of core things that keep my chronic illness under control; The following is based on an illness that has a medical diagnosis, which I appreciate if you're someone reading this with a suspected or undiagnosed condition, may not be totally useful but it may still provide some ideas; As I wrote in the previous blog linked above, I lived a lot of my life with a chronic illness that was undiagnosable, so I do understand the frustration and loneliness that can cause:
Medication: Seems obvious but the right medication is important and working with doctors to get on to the right medication can take years, 12 years in my case, and may require a lot of research on your own in between consultations; I've also built up a good rapport with my GP which I've found really helps but it took time to find a GP as helpful as the one I currently have.
Diet: Getting this right has been critical for much of my life but became very important in getting ulcerative colitis symptoms more under control. I personally use elimination diets to work out which food stuffs cause any issues; Also, I'd strongly recommend avoiding alcohol altogether; it has a lot more downsides than usual with chronic illnesses.
Meditation: This has had one of the biggest positive impacts on my health generally. It is fairly easy to learn, but using meditation and mindfulness on a daily basis really helped. I also increase the number of meditations per day when flares are happening. Poor mental health and stress of any sort really impact my symptoms and this has really helped smooth out problems for me.
Rest: If you talk to anyone with long-term experience in any type of chronic illness, regular rest will come up as critical. Especially when you feel your body flagging, don't push yourself, it'll only increase recovery times. Naps are your friend. Get comfortable with this idea and learn to overcome the feeling of laziness it can bring.
I've also found certain dietary supplements have helped periodically with ulcerative colitis over the years:
Slippery Elm Powder: In the first few years when I was really struggling with repeated flares and getting them back under control, I found about a teaspoon of slippery elm powder mixed with warm water to form a thick drink, morning and evening, helped a lot. There is some encouraging scientific research for this one but nothing particularly definitive.
VSL3 Probiotic: A horrendously expensive probiotic that has uniquely been shown to help with chronic illness in studies, which I found very helpful during and immediately after a flare. BUT I have to stop shortly after each flare otherwise it would have a very detrimental effect on my digestive system. Not to mention the price.
Psyllium Husk: This is one I still use regularly, I take one capsule with a meal 3–4 times a week and I find this really helps with fibre regulation. I don't think there's anything more magical to this one other than its fibre but there is some scientific evidence to back up its use during remission.
5-HTP: This one caught me by surprise, I started taking it a little while ago to see if it would help with some mental health issues but it immediately helped with ulcerative colitis symptoms instead. Interestingly there are scientific studies that show it has positive effects on ulcerative colitis.
Obviously incorporating these into an active lifestyle is challenging, but not impossible, we just have to learn to work with our bodies; And to try not to compare life achievements to more able-bodied people as it takes us longer to achieve things in general. The world is getting more accepting of these issues but it can still be heart-breaking when you want to hit goals or achievements, only to feel it's not possible within socially acceptable time frames. And that is all before we consider just making a living; it can be very tough and the statistics on those with chronic illnesses and work/career are not great but an increase in home/remote working will have helped reduce ableist approaches to working.
My last piece of abridged advice is to keep a record of your achievements, be that a long-form CV, website, journal or a list on your phone. It can feel very lonely when there's gaps/flares between achievements or life events but when looked back at as a whole, it feels a lot better and you can see you have done a lot. It just takes us a bit longer than most.