About Me

Thirtysomething mama working to find a happy place with autoimmune issues (colitis, asthma, allergies) and chronic anxiety, balancing medication with lifestyle.

IG: @wtfautoimmune

Full diagnosis story

My saga started in early 2016, when I started having unpleasant bathroom symptoms I didn’t understand. On visiting the GP I was reassured that ‘this often happens after having children’, reassured with some printouts about IBS, and referred for blood tests, which came back clear.

So naturally every time the symptoms came back, I pushed them under a carpet of denial. After an intensely stressful autumn, the symptoms returned again. At first I told myself I had a stomach bug, but as the bleeding and urgency worsened I knew something was wrong. My skin had broken out in deep cystic acne. Acid reflux plagued my nights. I started finding excuses to rearrange playdates to our house, or double checking which public toilets were open where. Cringing with embarrassment I booked another GP appointment and in the meantime, turned to Dr Google for ideas. The first to come up was celiac disease. Yes, I got stomach cramps and worsened symptoms the day after eating wheat. Impatient to try and find out what was going on, I bought a home celicac testing kits from the chemist, but this came back clear.

Meanwhile the anxiety worsened. Having lost my mum in my twenties to cancer and struggling since with health anxiety, the battle to fight back these fears became harder and harder, as I waited for my GP appointment. I stayed off wheat and most dairy, and cut out caffeine. Some of the worst symptoms eased, but the bleeding and cramping still remained. The GP was sympathetic, and referred me to the Gastroenterology Clinic – the wait would be about 6 weeks. She also ordered more bloods, but due to our perenially overstretched surgery that would take nearly a week.

The bleeding worsened. I was passing clots, and struggling to leave the house. I booked an emergency GP appointment and fortunately managed to see the same GP. I broke down and told her I had two small children, I could not be seriously ill. She took a deep breath and got straight on the phone to the Gastroenterology department at the local hospital. They confirmed there was no medication I could take right now, but they would get me in for sigmoidoscopy (like a colonoscopy, but without the dreaded liquid prep – silver linings!). And more bloods to check for anaemia, she gave me a magic note which somehow ensured that the practice nurse fitted me in there and then.

In the mean time I was just to avoid any foods which seemed to be triggers and try and stay calm. Ha! Hard to stay calm when you don’t know why your body seems to be failing. The 10 day wait felt like an eternity. Evenings were spent on the toilet or hanging on through multiple panic attacks. My husband was working away again so I used the solo bedtimes to try and focus me but it was utterly exhausting. I tried my best to stay away from Dr Google but every time I ventured there, the symptoms pointed towards ulcerative colitis, an autoimmune condition affecting the lining of the lower bowel. Phrases like “lifelong chronic illness” and “colectomy” flashed up and I would try and ignore them. As the days went past the bleeding started to lessen, but I could not get it to stop.

The day of the scope came round. The US election results were announced early that morning and nothing seemed to make sense. My dad kindly drove me to hospital. A lovely nurse prepped me (unpleasant, but bearable), and the next thing I knew I was in a most compromising position with my insides on a TV screen. It was apparent within seconds what the problem was. The messy, ugly ulcers looked just like the photos Google had thrown up when I read about ulcerative colitis. The discomfort I was experiencing through the procedure backed that up. The doctor rapidly leaned over and said, quite cheerily “You have colitis. We can give you something to help treat this”. Unfortunately by this point the Gas & Air had taken effect and I was just a weepy mess, 50% relieved that there was nothing more sinister in there, 50% trying to take in the fact that I had developed a ‘real’ condition.

The GI doctor prescribed me mesalazine enemas and explained that I had only 25cm of the disease – which, to my enormous relief, would not increase my risk of bowel cancer –  and off I went. Since then, I have not had any active bleeding. I am grateful that even at it’s worst, I did not become anaemic. Moderately dysfunctional digestion, joint pain, tiredness, but by and large it is under control. I flare mildly every month, and am trying to understand how my hormones affect the condition. I eat as little processed food as possible, wheat free, low to medium amount of grains, low dairy and no caffeine (miss my strong coffees!). I take a lot of supplements and drink a lot of water. I’m exercising regularly for the first time in my life.

I allowed myself to read more about the condition and started to learn more about autoimmune diseases. Slowly the pieces started to fall into place. Firstly the chronic  life-long anxiety which had been ever growing after the birth of my first child 5 years ago. Tellingly I used to describe as ‘gut churning’. Maybe my anxiety wasn’t causing the gut-rot, but actually a by-product of an ailing digestive system? As I worked to rebuild my gut flora and gently introduce nutritious, easily digestible foods, my constant panic attacks and feeling of dread started to ease.

Other issues started to make sense. My worsening asthma, which had resulted in me having to take a strong steroid inhaler every day. My enormous collection of allergies – if asked by doctors what I was allergic to, the answer was usually ‘it would be quicker to tell you what I’m NOT allergic to’. It felt like anything could set me sneezing and wheezing. I would often start the day sneezing 20-40 times in a row. Even the acne which had spared me as a teenager but had worsened through my adult life. I started to understand that all these problems were just facets of the same issue: my body was increasingly unable to handle stress and was starting to destroy itself in the process.

Three months in and I am just at the start of this process. I feel incredibly fortunate that my body has so far responded to the medication and lifestyle changes to positively. I’m hugely grateful for everything the NHS has provided. I’m also aware that with two small children (both of whom have additional needs), and huge hormonal fluctuations in the shape of the menopause lurking, I urgently need to find positive ways to manage these conditions. This blog is my way of keeping track of what is working and trying to find patterns. If you’ve read this far, thank you, and if you are dealing with anything similar, please know you are not alone.