So despite the glib title to this post it is actually accurate. Since the 23rd of March I have left my house but a mere four times. Three of those outings were medical related. As some of you may know, I have Ulcerative Colitis and since mid-March I have been flaring up.
Ulcerative Colitis is a form of IBD. It is less well known than its sister disease – Crohns. I like to think of it as the Kim Kardashian of the IBDs circa 2004-5 when Kim K’s friend Paris Hilton was the better known celebrity. One day UC will be as famous as Kim K’s derriere…which I guess would be a bit ironic being that it is a disease that can affect the ass.
I’m pretty sure I had the disease for a long period before diagnosis. Hindsight is a wonderful thing and looking back I can see many periods of my life that could have been considered as having actve disease; excessive bouts of diarrhoea, stomach pains, blood and mucus in my stool (sorry for the over share). Throughout college and university, I never left the house without Imodium. Looking back that probably should have been one of the first clues.
During this period, I worked in a call centre. They had toilets away from the floor I worked on and if I was having what I now refer to as a ‘Colitis moment’ I would use those bathrooms. This was fine until one day a sticker was posted on the toilet door saying if you have frequent bouts of diarrhoea and there is blood or mucus in your stool go to the doctors. This could be a sign of cancer.
Jib that! I was terrified. So I did what and normal, terrified person would do. I ignored the problem and hoped that it would go away.
They say that flare ups can be triggered by stress and before I was diagnosed I was going through a very stressful time in my personal life. The symptoms were getting worse. I went on a trip with work. It was an outward bound trip working with GCSE PE students taking them gorge walking and camping and I genuinely don’t know how I got through that trip physically because I was in a mess. When I returned home the diarrhoea started again. I went to see my GP who booked me in for blood tests, gave me some medication and requested my first colonoscopy. It turns out I was severely anaemic and had to be put on iron tablets and also B12 shots every three months.
But I was still getting worse. Needing the bathroom up to 20 times a day is exhausting especially when you are passing blood every time you go. Sorry if you are squeamish but it isn’t a little blood. It is a full on Carrie moment down your toilet. I used to live on the third floor of my house and some nights it was easier to bring my quilt and pillow down to the corridor and sleep outside the bathroom rather than having to run up and down the stairs so much. I was once found by my mother doubled over in the bathroom, unable to stand up straight. She threatened to kick me out unless I went back to the doctors.
I was diagnosed with Ulcerative Colitis in November 2012 to very little fanfare. I didn’t really know what it was and my fiancé (then boyfriend) was the one who explained to me that it was a chronic condition with no cure. I was diagnosed by having a colonoscopy which showed the damage to my large intestine. There are many different forms of colitis and mine happens to be Pancolitis which means that my whole large intestine is diseased.
Since diagnosis, I have been medicated with various drugs. The main one that I have to take every day is Pentasa. I take 4000mg per day. I have also had to be medicated several times with Prednisolone steroids (these bad boys are not fun) and I have suffered the horrible side effects – mood swings, insomnia, headaches, shortness of breath, massive weight gain, thinning of my bones and hair loss. My doctors have also tried me on a variety of different medications that have had some pretty bad effects on my body.
I was treated with Azathiaprine after my first serious flare since diagnosis which caused me to develop Sweets Syndrome and Pyoderma Gangrinosum and my chin fell off (I kid you not. For photos please look at the One Year Later post).
I was then medicated with Infliximab which is classed as a biologic. This is medication that is administered intravenously initially over a six hour period and after a loading dose you have to have an infusion every eight weeks. I loved Infliximab. I felt amazing after taking it. Sadly after 10 lovely months I grew immune to it and had an anaphylactic attack when being infused. Fortunately though, Infliximab put me in remission.
I spent three happy years in remission. Sure there were still small periods of feeling yuck but the majority of the time I was fine, just mainly tired with sore aching joints. But I was, for all intents and purposes, fine.
In May 2017, I started to feel a bit rough. It was just little things: tiredness, dicky tummy, fatigue. It steadily got worse and by the end of August – after trying a new form of steroid I was back for another short stay in hospital. It took several weeks to get the flare up under control and even more than that to get my strength back. Little things, such as standing up to heat up soup, would leave me shaking for hours afterwards. Being sick really does knock it out of you.
Since November 2017, I have been back at work and for the most part I have been fine. This recent flare up has come completely out of the blue. There is no rhyme or reason for it and I can honestly say that I didn’t welcome it. After the last flare up my doctor decided that he wanted to be pro-active. I asked to see if I could just stick to the Pentasa for now and if a flare up happened again then I would go for new medication. He advised me to go onto another biologic but was happy to wait to see if I maintained having no active disease but because I am flaring up now I have to take hospital advice and will soon be starting infusions of Vedolizumab (or its brand name Entyvio). This again will be administered intravenously in hospital once every two months after a booster dose.
To say I am sceptical is a bit of an understatement. I guess when I have had so many medications either eat away at my own body or for my body to grow antibodies towards it I am just not filled with confidence that it is going to work. Is it wrong of me to feel that way? Probably and it is completely unfitting with my otherwise sunny disposition. I just can’t help but feel like the medication or my body is going to let me down.
If Vedolizumab doesn’t work then from what I have researched the next step would be surgery. This would potentially mean having my colon removed and having my intestine coming out of my stomach (think Alien but less angry) and my waste be collected in a bag. Now people tend to think of this as the worst thing but over the last two flare ups I have come to the conclusion that it really wouldn’t be the worst thing.
Ulcerative Colitis has robbed me of more than the last 28 days. I used to do things. I used to go to music festivals and eat out and be able to get public transport without counting the minutes between stops and trying to figure out where the nearest accessible bathroom is. I could learn to drive or ride in a hot air balloon (although to be honest a hot air balloon ride does not appeal to me in the slightest) I could get stuck in traffic and not have a panic attack or I could even just go for a walk. Things that I took for granted before having Ulcerative Colitis symptoms.
So I guess the point of this post is this: I’ve got a sore colon but I’m still rollin’. Ok, no it’s not that. I guess the point of it is just to vent or to discuss what I have been going through and to make people that little bit more aware of invisible illnesses or to take the poo out of tabpoo – that last one didn’t really work did it?
That’s me, folks, diseased bowel, intestines, and a weird sense of humour.