“Treat everyone as a human being, not a textbook case.” – Sara’s story

I got diagnosed at 32 after my second child was born.

From the moment he was born, I didn’t feel right. About a year after, I really started noticing symptoms. I had perianal issues, and it was getting dismissed by doctors; “you’ve just had a baby, you’ve probably got hemorrhoids.” But it was quite severe, and going to the bathroom was like passing glass. Then it became stomach issues, which I couldn’t ignore.

I was quite used to having IBS symptoms. I also have celiac disease and can’t eat gluten. I sort of dismissed some of the early symptoms – thinking that I’d eaten something wrong. Then it felt like I had gastro 24/7. I went to the bathroom 15+ times a day, and I couldn’t hold anything in. Once that started, my symptoms escalated very quickly. I didn’t know what was going on with me, and no doctor was able to pick it up.

I lost over 15 kilos within about three months. Even then, the response from GPs was, “it’s anxiety – you’ve had anxiety all your life.” I had doctors asking me if I was taking laxatives to lose weight. We have a history of bowel cancer in my family, and it reached the point where I basically forced a colonoscopy. I said, “I’m at an age where I want to check this.”

I did the colonoscopy – and I’ll never forget the specialist’s face. He came out and said, “I’m so sorry – your bowel is completely littered with ulcers. There’s not a section of your large bowel that’s okay.” He was certain that I had Crohn’s disease, and within a few weeks, the biopsies confirmed this. What followed was the emotional journey in accepting the diagnosis. It’s something that I’d personally never heard of. No one in my family has Crohn’s Disease, and nobody I knew had Crohn’s disease or colitis. At the time, I didn’t know what it was.

I remember thinking that I’d just take a tablet and be better. That was me being naïve. Then I went through about 18 months of hell – in and out of hospital. That was during Covid-19. I was diagnosed in February 2020 – a few months before the first lockdown. I was put in an isolation ward, and I couldn’t see the kids for a few months. It was really traumatic. I was put on liquid diets in hospital because I couldn’t stomach anything. I tried multiple tablet medications, most of which failed. I went through two specialists whom I didn’t connect with. They told me I needed a colostomy bag and, after just being diagnosed, I wasn’t coping.

I was put into contact with Professor Michael Kamm, and I call him my angel to this day. He said that he’d try everything not to go down that path straight away. I was put on Stelara, as well as high doses of intravenous steroids. It took about eight or nine months before I noticed any change. My inflammatory markers remained high for a long time, but we eventually saw some movement.

By the two year mark, I was in remission. I also put myself on a very strict, anti-inflammatory diet which I can’t really come off. Every time I try certain things – like red meat or fruit – my markers go straight up. My body also became addicted to the steroids, and it took me a long time to get off them. But now I can live a semi-normal life.

I’d never experienced depression in the past. I’ve always had anxiety, but feelings of depression kicked in and became very intense when I was in hospital. I got to the point where I couldn’t stay at home by myself, so my mum moved in for a while.

My brain fog was immense, and it was a dark time.

I was treated at St Vincents.

I received a lot of support from my specialist whom I saw at one point twice a week. I was always in contact with him, and he was great at pointing me in the right direction. Personally, I felt that the nutritionist I did see offered quite a generic approach. I went through a trial and error process to find a diet that was right for me. From a nutritional perspective, I did feel quite alone.

Following the diagnosis, I joined online support groups. A lot of my friends didn’t understand what I was going through and, amid Covid-19 lockdowns, I wasn’t able to see them. It was very isolating.  I took bits and pieces from different people’s stories. I went through a period where I found these stories to be quite confronting. I saw a psychologist to work through some of my thoughts, which helped. My aunt was also a big part of the change in my thought process.

She had cancer, and I was talking to her about how she managed ruminating on worst case scenarios.

She provided me with great advice – the basis of which was my focus and energy should be on getting through the day. I try not to worry about what this disease could do to me. I just worry about what it’s doing right now, and how I’m going to better it today.

Now I’m able to take what I need from these stories, and distance myself from the details I choose not to think about.

I recently had a spike in my inflammation markers and I’m waiting for biopsies to see why that happened. But as far as I know, I’m still in remission.

In terms of how IBD affects me daily, I generally experience more body pains. I’ve also had issues with my sinuses. I’m almost always sick, which might be a side effect of the medication. My diet is not normal – there’s a ridiculous amount of food groups that I can’t eat – and my hemoglobin levels are terrible.

My pain levels have dropped compared to previous years, but I still live with constant pain, and am generally uncomfortable every day.

Stelara is working to some degree – but to what degree, I’m not sure.

My advice for people trying to get diagnosed is to find a good support network – with people who will be there for you and listen to you.

I’d also recommend trying to advocate for yourself whenever possible. What you’re feeling is legitimate – so don’t take the first answer given to you as gospel. Push for further tests if that’s what you believe you need.

In terms of the medical side of things, a blanket approach can be harmful. All of our stories are so different, and everyone responds to different things. Treat everyone as a human being, not a textbook case.

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