Mara’s Story

Hypothyroidism, ulcerative colitis, rheumatoid arthritis and chronic migraines.

My health journey started at very young age. I got diagnosed with hypothyroidism when I was just a young child, i dont even remember life before I had it, I must have been 7 or 8 years old when I got the diagnosis. 

As a child I thought it's so annoying that I need to take a pill every morning before breakfast, and every 12 months I needed to go see a doctor to make sure everything is still the same. I hated it. It made me gain weight and made it impossible to lose it, the headaches, fatigue, muscle cramps and other symptoms. But these were manageable with medication and overall life was fine.

But then my health decided that it wants to try something else now, as if life was too boring and easy how it was.

So, when I was 13 years old, turning 14, I got sick. I lost 20kg In 3 months, I couldn't eat anything, constant diarrhea, bloody stool, dizziness, fatigue, muscle weakness, headaches, my mother described my complexion as "wax doll". 

One day I went to the doctor thinking it was just a weird stomach bug, and suddenly I was transferred to a bigger hospital, my hemoglobin was dangerously low, and infection markers high, I had been internally bleeding for months. I stayed at the hospital for the weekend to get blood transfusion and antibiotics to try to lower the infection markers. 

Then came tests, like 20 vials of blood, colonoscopy, endoscopy, I swallowed a capsule camera to get imagining of my whole GI track. And I got diagnosed IBD, ulcerative colitis to be specific. 

Then came medication trials, iron infusions, hospital stays. When my doctors realised that it's so bad that my body is unable to absorb oral medicine, they started biological medicine. I got it every two weeks intravenously, and the first kind was in use for 2 years. 

During those two years I also got diagnosed with rheumatoid arthritis, which added medications, hospital stays for infections and cortisone shots to 16 joints at once, fortunately for me, I love needles.

Well, two years go by and no results, colonoscopy results and blood work results are just worse. So they suggested surgery, but I wasn't ready for that yet, my mental health was very bad, I was already suicidal so the thought of surgery was scary because I knew that I wasn't mentally ready for that, so they switched the medication and we tried for another 2 years. 

Before my 18th birthday I had a colonoscopy, and it was so bad that my doctor thought she's looking at cancer, but fortunately biopsy came back negative. 

After that colonoscopy, I requested to have the surgery, I was tired of going to the bathroom 20+ times a day, constantly in pain and tired.

So, 20/12/2022 I had my first surgery, just 18 days after I turned 18 years old. Laparoscopic colectomy was performed, they removed my entire colon, but left my rectum and anus. I got an illeastomy bag.

Recovery was interesting, not horrible but definitely not fun. I got used to the bag quickly.

The next two years was spent well, no pain, I gained weight back, I got used to taking care of my stoma and I felt like my life was back. During those years I also had time to choose if I wanted a permanent illeastomy bag or do I want to get a j-pouch surgery.

So when 2024 came around and I had to choose? I chose to keep my illeastomy bag, I had gotten attached to it and I felt comfortable with it, I didn't want to risk anything. 

I had my second surgery 10/06/2024 and they removed my rectum and anus, no more bootyhole for me. 

Recovery from that was worse than the first, mostly because I couldn't walk, sit or laugh without my butt hurting or stretching stitched. I also got nerve issues to my spine from the epidural that was used for pain management, it was placed wrong and caused damage. 

The same year I got diagnosed with chronic migraines, after months and months of having almost daily migraines.

Now in 2025? Life is good. I can travel, date, work and study, exercise to some extent if my joint allow it, I still have some meds but it feels like nothing anymore.

I might have lost my teenage years to sickness, but now as a 21 year old, I am excited to spend my 20s as a capable young woman with manageable pain.