How Summer and Heat Impact My IBD and Ostomy
Last updated: May 2023
Even though the summer months are coming to an end, I still wanted to write something about how the heat impacts my disease with the hope that if any of you are feeling similarly, you know that at least one person can identify with you.
For starters, pre-ulcerative colitis, I always loved the summer months. I was never a huge fan of the heat (who really is?) but it didn't bother me because I was always near some kind of water. Being a former competitive swimmer, I was either practicing with my team, participating in swim meets, hanging at the pool with my family and/or friends, or at the beach.
I just seriously loved the water, never minded the freezing cold pool when I was younger, and being outside made me so happy. It was truly my favorite time of the year!
Ulcerative colitis worsens in the summer months
Anyway, for some reason, my disease progression has always been worse in the summer months in some shape or form. I am not sure why actually. My gastroenterologist once told me that most of her patients get sick right around when school is beginning, the holidays, or another personal stressful time the patient was experiencing.
I know there are a lot of articles out there that link stress to inflammatory bowel disease. Just to be clear though: there is absolutely no evidence to suggest Crohn's disease and ulcerative colitis were caused by stress.
The data that is out there suggests that in some patients, stress can exacerbate symptoms once the person already has the disease since we all know the negative impact stress can have on anyone's health. My disease never seemed to be impacted by stress but I know that is what makes IBD such an individual disease.
Dehydration with an ileostomy
I never seemed to understand the summer problems I always had/have except for the fact that the heat can just flat out wipe anyone out. Not to mention, living without a large intestine/colon and having an ileostomy can make a person dehydrate easier causing a malaise feeling, or possibly worse.
Ever since having my first ostomy 14 years ago, and now having my permanent one for 5 years, I look at the water very differently.
I have to micromanage what I eat since even though I am now comfortable wearing a bikini with my ostomy showing, I am not okay when the bag fills up. Plus, the bathrooms are often far away and not very stringent on cleanliness. I also always hate seeming like I have to go all of the time, which makes it so I don't drink much and I never eat.
Being in the sun all day, which usually started pretty early, without the ability to properly hydrate and nourish yourself can wreak havoc on anyone - let alone someone who has a problem absorbing fluids and a body that is pretty much working 24/7 just to keep it going.
Skin cancer and Crohn's or UC
I was also someone who went tanning in high school and the very beginning of college, would barely need to wear sunscreen because I would get so dark and never burn, and always loved baking in the sun. Everyone looks and feels better when they are tan!
However, the older I got and the more research I did, I realized that there could be a link between inflammatory bowel disease and skin cancer.
So that activity no longer was a carefree experience but something I had to worry about in the back of my mind.
Trouble sleeping in the heat
Does anyone else have an even harder time sleeping when it is so hot and humid? The night sweats I get from having IBD are bad enough, but when you layer on the fact that the actual temperature is on the warmer side (air conditioning is expensive!) it just makes it worse.
I am an insomniac as it is but I have the greatest chance of getting some sleep if I am cooler so I can be cozy under a blanket or two. Not sleeping as well can also make a person feel kind of blah physically and emotionally.
This can lead to not being able to handle certain situations in a calmer manner so those individuals who experience stress as a trigger for their symptoms could be impacted more greatly due to lack of sleep.
Skin irritation in the heat with an ostomy
My ostomy appliance also prefers cooler weather. Humidity and moist skin under a flange is a recipe for skin irritation. One tip I have that doesn't only extend to the summer months is to blow dry your ostomy after showering or immersing yourself in any kind of water.
It has been hugely helpful for me. Not perfect, but it has definitely made a noticeable difference. Plus, I know I am taking care of my skin, and given that area of skin on my body is going to need to have an appliance on it for the rest of my life, I better treat it as well as I can.
I would love to know some of your thoughts about the summer months and/or heat and how it affects your Crohn's disease or ulcerative colitis.
Do you experience some of the same things I mentioned above or has your journey been different? Please share below; the more we talk openly about what is going on with our emotional and physical health, the greater the chance that we can help someone feel less alone (even if they don't necessarily feel comfortable commenting just yet).
What has been the most helpful for managing IBD symptoms?