Following on from some of my previous blogs about having to go into hospital for some investigations, well I now have a kind of diagnosis, which is on the one hand a relief , whilst upon the other it's like, (and please excuse the language), it's just this is real life, " fucking hell man, how much more do I have to go through".
I have been off work now since May the 5th, it all started probably way before May if I am honest, however I thought I had just picked up a bug, and as things got worse, maybe possibly a Clostridium difficile infection, known as C.diff.
I won't go into the gory details, however diarrhoea, terrible tummy cramps, back pain, confusion, headaches, joint pain and even itchy eyes, along with a sense of being really fatigued and irritable.
Whilst visiting my G.P surgery I was given a weeks course of antibiotics, which didn't work at all and then when I returned I had to give various bodily fluids and samples and it was the poo samples that came back with irregularities.
My first colonoscopy was a fail, put down to poor prep. I swear I tried to drink as much of the vile laxative drink, Omg! it was disgusting, far worse than the first procedure itself, where yes I chose to be somewhat sedated. I mean who wants to be aware of a camera being shoved up your hoop.
As I awaited a second colonoscopy appointment I was becoming increasingly concerned, about my symptoms and as we all do turned to Google., though I do have to say I did NOT visit misinformation sites, sticking more to NHS verified sites.
Obviously the scary scenario I had in my head was that I would require surgery and have to have a colonoscopy and wear a stoma bag.
The first colonoscopy that wasn't successful I was informed that the results looked like I had Colitis. The second colonoscopy which was a little more uncomfortable and painful confirmed I had ulcerative colitis.
Moving ahead an appointment was made at the Inflammatory Bowel Disease Clinic where I saw a really friendly and supportive speciality nurse. This appointment was probably one of the longest one to one appointments I have ever had in my whole time as a patient, and I got to ask lots of questions and garner a lot of information in moving forward. One of the first things the nurse did when she met me was reassure me in kind words, something along the lines of "Glenn we will help you to deal with this and with treatment you will start feeling much better".
As my blog title says "I kind of have a diagnosis". You see although what I have is classed as Inflammatory Bowel Disease, which stems from something going wrong with my auto-immune system and then my body attacking itself, as for the Ulcerative Colitis diagnosis the consultants report was a little ambiguous. During the investigation it appeared I was mainly inflamed in a certain area and not as expected throughout. All I understand is it has made me feel miserable and I don't normally ask the question "why me" when various health issues have occur din the past, however this time around it has really got to me, so I have been internalising with a lot of swearing "WTF!". In my head I have put two and two together and blame all the horrible medications and treatments I have had over the years which have seriously affected my immune system. Anyhoo no good dwelling it is what it is.
As the appointment went on the nurse provided me with a website that the NHS recommend which is crohnsandcolitis.org.uk which is a very useful and informative site and saves me going through what Crohns and Ulcerative Colitis actually are.
I have now been placed on 2 months of steroids and tablets which I believe are for calcium. The steroids are called Prednisolone and the nurse informed me they can come with some side effects and that I must not stop taking them and make sure I finish the complete course.
Upon taking the steroids, within a couple of days they had really helped and this was such a relief. I have experienced some minor side effects, well unless its all in my head and psychosomatic I just cannot sleep, even though I am taking the medication around 7 am each day, and today, day 6 of taking the meds I am experiencing some low mood. This could be of course as I am bored out of my tree, still not feeling 100 % and missing going out on my bikes, especially as i now have my new Bartlett Tendon knee which I haven't even taken out of its protective box. Add the fact I have lost weight due to being ill so my prosthetic leg is not fitting great again.
Anyhoo the main reason for this somewhat personal blog is to not only tell my story, but to also maybe reassure anyone going through this horrible disease that it is good to talk about it and take support from where you can, in helping deal with it.
For me I have learnt I now have this for life and that it can be controlled through medication and that possibly I may have flare ups in the future once this flare up is settled. As with my Non Hodgkin's Lymphoma, it is no good putting my life on hold, everyday is a new one and it's better to live in the moment rather than worrying what is ahead.
