Hi! My name is Megan. Discover how I was first diagnosed with an Irritable Bowel Disease and how my life had to change after diagnosis. Be warned, there may be some descriptions of my symptoms that may not be what you want to hear whilst eating your dinner!
In November 2021 I moved back home with my parents. Not something that I ever wanted to do but I had little choice! Just before Christmas I began to get really sharp pains in my stomach and an urgent need to use the toilet. Now for me, quite often when I was tired or run down I could get a bit of an upset stomach, so initially I wasn’t too worried. But then I started to pass mostly mucus and blood and it was happening every few hours. I booked a doctors appointment and they referred me straight away to the gastro department at the hospital for a sigmoidoscopy (camera inside your large intestine/lower part of the colon).
I had to wait 5 weeks for the sigmoidoscopy. Which is pretty fast compared to what some people have to wait for! Those 5 weeks were horrible. My symptoms were getting worse, the pain would come on so suddenly and I had almost no time to get to the toilet on time. I was passing more and more blood as the weeks went on. And the exhaustion was like nothing I had experienced before, it was so draining. I didn’t want to eat because the more I ate, the more chance there was of the pain being more intense. At the time I was working with horses, and whilst I did take a few days off, when I was working, I had to make sure I could access a toilet on site! I had to stop riding because I was terrified I would have an accident whilst out.
A sigmoidoscopy is supposed to be less invasive than a colonoscopy. However, I experienced a huge amount of pain whilst having it done because my bowel was so inflamed. The nurse said they should not have performed it whilst I was awake knowing the pain I was in beforehand. But I got through it, they took biopsies and I was diagnosed there and then with Ulcerative Colitis.
I know many people have to suffer a lot longer than a few weeks to get answers and I really do feel for them. I was very lucky to get in so quickly and be prescribed medication straight away. The medication I am on has been amazing at keeping those symptoms at bay. But I do have the odd flare up that can last a few days sometimes a week. It is usually self-inflicted by eating a load of crap! But it can be brought on by stress.
I truly believe that stress is what caused my IBD in the first place. I have been under a lot of stress for most of my life. From various things including narcissistic relationships, living on high alert, constantly being let down, never feeling good enough, toxic workplaces, people pleasing, anxiety, trauma, all these things put your body into stress which ultimately means your body never actually rests! Chronic stress causes inflammation (I have had issues with arthritis for years but it’s been dismissed because I’m “too young”). Stress releases cortisol which suppresses our immune system, this then decreases your ability to fight infection. So no wonder I always felt tired even before I was diagnosed!
So how do I manage my Ulcerative Colitis? Are there things I can’t eat because of Ulcerative Colitis? In all honesty, food is the one of the things I enjoy in life. and of course, eating a well balanced diet is beneficial for a healthy gut, but for me, the foods that cause my flare ups can change all the time! For a few weeks I couldn’t eat Doritos, they would go straight through me, other weeks I struggle with cheese, sometimes I can’t eat pizza, sometimes I can. The one thing that is usually consistent in upsetting my stomach is sweets. So I tend to just eat whatever I want and just see what happens!
I feel I have it fairly easy compared to some. My medication actually does a great job 80% of the time but I do always have to think about where the nearest toilet is if I’m going out. I love walking/hiking in the countryside, but I can get quite anxious knowing that there is not going to be a loo for miles! The one thing I struggle most with is fatigue. I struggle to do a full day’s work without feeling utterly exhausted by the end. Even doing chores on my days off are exhausting, I really have to plan ahead because I just don’t have the capacity to do too many tasks in one day. I do go out for walks where I can because it’s good for my mental health but the chances are I can’t do it the same day I do the shopping for example. Or I will need a day of rest after to recover.
I have experienced burnout before, but burnout with a chronic condition is something else. I quit my full time job because I was just broken, mentally and physically. I could not continue, I had to focus on my health. I took two weeks off, I was still exhausted. How the hell did I do over 40 hours a week whilst feeling like this!? Yes I do create more work for myself by having a horse that I need to do at least twice a day, but I probably wouldn’t even get out of bed if it wasn’t for her. She gives me purpose. And when I am with her, nothing else in the world matters, you escape all those troubles. I was terrified to go back to work because I didn’t want to feel that way again. So I slowly started doing a few half days here and there and slowly built it back up. I am now much more strict on my hours and days that I can work. I have to be! Don’t be shy at saying, “well if I do this task… I need this much rest before the next task”. Some days you may not need rest, other days you may need a few hours, or you may even need a day or two depending on the task, and that’s ok! Only you know your body!
Click here for a few top tips for dealing with a chronic condition.
