"Diagnosis in Endoscopy"

Following bowel issues I had been referred for a colonoscopy. During the procedure I was advised that I had taken the incorrect medication for the bowel preparation as I am breastfeeding, this was very upsetting as I had already fed my baby following taking the medication.

With hindsight I had a very confusing conversation about breastfeeding in the pre-op appointment with the nurse where they had asked me so many times when I was planning to breastfeed I had said in the end that I no longer understood what they were asking. They had obviously then not further clarified that what they were sending was suitable for me to use.

The procedure resulted in me being diagnosed with moderate pancolitis. At the discharge conversation, the nurse advised that I had been prescribed medication but they couldn't see the prescription on the system. They nevertheless sent me to the pharmacy anyway, who then said the prescription wasn't on the system and I had to return to endoscopy. Considering I hadn't eaten for 28 hours at this point and had been sedated, it was very tiring.

During the discharge appointment, the nurse only mentioned the medication. I had to ask if there was a diagnosis, at which point they read off the endoscopy notes that it was pancolitis and gave no further information. At no point was I advised what this diagnosis meant, given any information about it, or told that there would be any follow up appointment. I was left to look up the condition myself which led to a very scary list of symptoms and life long implications.

Similarly I was handed a huge bag of medication for this illness, with what seemingly sounded like a huge dose to take, without anyone having discussed the illness or the medication with me. My research online and in the medication information leaflets told me that I was likely to be on the medication for life, and that there were some potentially very serious side effects, and that it was likely to cause side effects in my breastfed baby.

I was completely blindsided by the diagnosis and the medication and it was really very upsetting that both of these were given to me without any discussion, information, advice or details of a follow up appointment. The whole process caused a lot of distress that could have been avoided if the medical team had taken the time to discuss everything with me. It also resulted in a delay to my treatment as I was not willing to start the medication without discussing it and the implications for my baby, which I now know has likely impacted me further as the treatment was required asap.