My UC Journey

Where Have I Been?

Where have I been?

Hey everyone. I wanted to take this opportunity to recap as it has been some years since I last posted and I may have enticed a few more readers, I hope! Now, I would like to tell you all that my absence is a result of finding a super rare cure for Chronic Illness or that I had a sip of some ancient tea which restored my Colon to full health, but that didn’t happen. Instead iv been learning how to live and adapt to my condition so I can live a full life, there has just been a lot of bumps in the road! See my super rehearsed intro below.

My name is Lee, I have suffered with Ulcerative Colitis for around 4 years now. I have decided to restart my Blog as I have been given the unfortunate news that I have to have a sub-total colectomy, to remove my large bowel. Now, I know what your thinking! Have I tried this medication and that medication? Yes, I have been on so many different medications you will not believe it. Unfortunately, I have been labelled a non-responder. Let me get you up to speed.

Where I left off. It was 2017 and I had overcome my first major flare, I had gone back to work and I was back into my social circle. Things were looking up. The medication I was on at the time was known as golimumab. This was a self-injection like Humira for those who know it. Side note, it hurt like hell. The medication seemed to work for the most part, but I still suffered majorly with urgency, diarrhoea and anaemia. But I could cope! I managed to put on more weight and continue with my passion of working out and somehow, I got a promotion at work. Unfortunately, I began to build a resistance to the drug and was soon back in a flare.

New Drug. I was flaring for some time before being given another new revolutionary drug. I swear the consultation with your IBD Nurse/ Consultant is like a sales pitch. I was sold, get it in me! Vedolizumab was the name, controlling UC symptoms was its game. It was like Infliximab in the sense it was administered as a drip every 4-6 weeks. At the start I seen no real improvement but as time went on I manged to get to a healthy state. Never passing, I would sayyy, 85% health. Meaning, I still had the urgency and with this drug I suffered with bad migraines and stomach cramps.

September 2018 I was taken of Vedolizumab after just 8 months as I was back in a flare. They attempted Azathioprine for whole 48 hours but that nearly shut down my kidneys. You can probably imagine I was beginning to worry about surgery at this point. I was told there was no medication left and I would need to apply for trial medication. TRIAL MEDICATION. I was on the waiting list for 6 months, all the while taking 40mg of Prednisolone. I had Moon face, Acne, Week joints, Week Teeth and the worst night sweats for 6 months before they gave me a new drug, again!

Tofacitinib. This new drug was an oral medication which was very different to any before it. It was easy to take, had no immediate side effects and (drum roll please) it worked. My symptoms disappeared again, and my life was back on track. Nothing could stop me now! Oh wait, I got the flu, which triggered a flare up and I was right back in hospital. At least I got a year of my life back.

Present day. After I exhausted the medication on offer, I was stuck between a rock and a hard place. I was given the option to try and go without medication or make the option to have surgery and have an ileostomy. To make this even harder Covid-19 showed up and made all consultations, advice, visits, tests and a potential surgery date impossible to get. PHEW, now your caught up. BRING ON THE SURGERY!

Follow my next post for my Surgery Prep!