In the past 4 days. My plan has been changed three times.
PLAN 1 – mentioned in last update:
Medicine: Linaclotide w/ 1L glycoprep daily
My urine looking medicine did not sit well with my stomach. It is the most unsustainable long-term plan of man time. For any of you that have ever had to drink Glycoprep will know how terrible it tastes. IF the medicine was to work my specialists wanted me to begin drinking 1L EVERYDAY!
NOT A THING! I did one day, where I was reminded how terrible it tastes. How bloated it makes me feel. How long it takes to drink, how much it will continue to consume my life in the future. So I decided to stand my ground and informed my doctor that this plan was not sustainable regardless whether it was going to work (which it didn’t). So that was scrapped.
Medicine: Lianclotide w/ half sachet Picoprep (bowel preparation) & Pyridostigmine
The idea: Given the Linaclotide was not working; however, was giving me minimal side effects the doctors were adamant I should continue to try this for two weeks to truly determine whether it was going to work. They then after a very heated discussion we agreed on a few days rather than two weeks. In replacement for the Glycoprep, half a sachet of Picoprep was viable PLUS they would add in the Pyridostigmine (which I have previously already refused) to just ensure it does not work.
How I felt about this? Frustrated. Very very frustrated.
Why would this be any different? It involved two bowel medications. One that pampers the colon (Linaclotide) and one that stimulates the nerves in the body (Pyridostigmine).
Pyridostigmine is not usually used for my condition. However, can be used to stimulate nerves in the body and therefore muscle contractions. The idea was it would stimulate the nerves in my colon and enhance the muscular contractions to support the functioning of my bowel. I initially refused the medication as it has very similar side effects to Prucalopride which the hospital have now stated I am allergic too; however, also heightens your anxiety levels… like I need that!
Even those I refused the Pyridostigmine they influenced me to try it even if it was just for a few days. 30 mins after taking the medicine I got a massive headache, felt nauseous, had blurred vision, my heart rate was insane, I was out of breath.. yet I had to fight to stop taking it. ‘Are you sure you don’t want to take it for another 24 hours?’ Errrrm yeah I’m pretty damn sure I can’t feel like this for a moment longer so yes. YES I AM SURE!
NOW after stopping. They have realised that I have had a reaction to the medicine. AGAIN.
WHY AM I FRUSTRATED?
This week has consisted of meeting the main man of the team of to put it kindly.. did not rock my boat. Many things were sprung on me Monday 19th March. Anorectal Manometry, more medicine (as presented in Plan 2) and surgery looking further and further away. I got frustrated. Mum got frustrated. We were both crying.. and in the end I asked the doctors to leave as I felt like he was shitting all over my parade. My specialist returned later and calmed me down about all of the information and told me that he managed to book the procedure for that afternoon so I wouldn’t get anxious and offered his support whenever I require – BLESS HIM. I need to buy him a present. He is the best.
The rest of the week I have felt very overwhelmed. I have felt like my word has been overlooked and my choices have not been accepted and ultimately been pushed aside. This week has involved arguing my case a great deal and pushing for what felt right for me. Not what is right for the doctors. I have felt so unwell from the medicines and then have had to take more medicine to counteract the side effects. How many chemicals can you fuel your body? Really? Too many for my liking thats for sure!
I am currently just taking Linaclotide with half sachet of Picoprep. They are considering the dose to a higher amount; however, given it has not worked for the past 6 days. It is unlikely to make a difference as usually (TMI coming up…) it gives people diarrhoea. I haven’t even been to the toilet. Splendid.
I was put back in contact with the surgical team Tuesday as they agreed I was very at the end of the medication side of things. The surgical team said the main surgeon needed a second opinion as it is a very rare condition to conduct such a big operation on. The second surgeon came to see me yesterday (Wednesday 21st) and said that it is realistic at this stage to discuss surgery further as it is likely that it will go ahead. This morning the surgical team came around and informed me they are going to discuss with the medical team to determine how long they want to ‘trial’ this silly medicine for to which I politely informed them I am happy to have surgery at this stage than waste time trying a medicine that has done nothing for me. They agreed and said they would have a look at dates following discussion with the medical team and get back to me ASAP.
I AM GETTING A BLOODY SURGERY DATE.
I am probably the only person truly looking forward to surgery. I know there are SO many complications. I know I will probably have a lifetime supply of complications BUT anything is bearable after the past 18 months of pain I have endured. The discomfort. The exhaustion. The mental battle. I am just excited to have surgery. Recover. AND GET BACK TO LIFE!
Cross your fingers and toes that the surgery is soon!
Thanks for reading 🙂