My IBD Journey

I had been with my partner for six months when I started experiencing symptoms in 2020. At first, I thought it was constipation and didn’t really think anything of it. That was until I developed crippling stomachaches and extreme pain when I was on the toilet, and had difficulty passing stools.

As the weeks progressed, my symptoms worsened, and I started to see blood whenever I was trying to pass a stool. This terrified me and made me want to seek medical advice as I knew something was not right.

Misdiagnosed with IBS

After countless trips back and forth to both my doctor's office and the hospital, I was repeatedly told that I had constipation and fecal impaction.

Eventually, a doctor gave me the diagnosis of IBS and I was immediately put on medication. The medication seemed to work for a very short period and then I was in constant agony. My doctor said that I should make a food diary to see if any foods were a potential trigger. At this point I had lost my appetite and was eating bland foods, and after I had eaten I was in extreme pain as it felt like someone was twisting my stomach.

I endured many sleepless nights and hours on the toilet. My partner was sleeping on the bathroom floor as he didn’t want me to be in pain alone. I definitely have hit the jackpot with him!

In addition to my prescribed medication, I was trying over the counter medications that were supposed to help with supposed IBS symptoms. Again, these medications only worked for a very short period and then I would be back in agony.

What led to the hospital

Years of suffering and pain lead me to the events that occurred in December 2022. I had begun to feel incredibly weak and an extreme lack of energy or motivation. I did not want to get out of bed and wanted to constantly lie down and sleep. Also, at this point the smell of food was making me feel nauseous and I had lost my appetite. I was eating and drinking very little but was constantly sick.

I was prescribed anti-sickness medication, and my body was rejecting that. I rang my doctor's office when they reopened in the New Year (2023), described my symptoms and they said that I needed to urgently go to hospital and get some IV fluids. I turned up to the A&E Department, looking as white as a ghost, dizzy, uneasy on my feet and feeling nauseous.

Testing for IBD

I was triaged within 20 minutes and was transferred to an assessment area where I was put on a total of 12 IV fluids.

I was then transferred to an Acute Assessment Unit (AAU) where I had various tests, scans, and a colonoscopy. The results of these tests were that I either had Crohn’s, ulcerative colitis, or both. I did not have a clear diagnosis as the IBD consultants were not in agreement.

Consequences of undiagnosed IBD

After AAU, I was transferred to the gastroenterology ward where I remained for two weeks. A consequence of my undiagnosed IBD was that I had four huge boils around my face. This was due to my colon being severely crowded with ulcers, so the infection had nowhere else to go other than my face.

In addition to these boils, I had lost one third of my blood (luckily it was not internal bleeding) and therefore I had to have a blood transfusion. The experience of the transfusion was amazing as it was the best I had felt in months and felt like I could conquer the world!

Ulcerative colitis diagnosis

Once the blood transfusion was complete, it was a long wait for my results from my various tests, scans and biopsies. Finally, my gastroenterology consultant confirmed that the biopsies indicated that I had ulcerative colitis. The consultant also gave me some resources to read so that I could digest my diagnosis and my partner as I did not fully understand what IBD was and what new challenges I would face on a daily basis.

Recovery process

When I was discharged from hospital, the recovery process was long as I had to regain the strength that I had lost in my legs as I was laid in a hospital bed for so long. Also, I had to deal with my hair loss which was a consequence of my medication and just in general adapting my IBD to my lifestyle.
Fast forward to today and I am on Infliximab self-injections which (fingers crossed) seem to be working for me. I take Octasa and Azathioprine alongside the injections which again seem to be benefitting me as they enable me to live a “normal” lifestyle.

The best part is that I now have healthy and normal bowel movements which is something I have wanted for many years! I still have so much to learn about IBD, and by connecting with fellow IBD warriors this will widen my knowledge!

I am grateful that I am able to share my story and encourage others to do the same.

I want to end the taboo against poo!