Hello all! What a crazy couple of weeks it has been! What have I been upto? What news do I have to share? Possibly something positive?! Continue to read to find out!
Firstly I was admitted into hospital a couple of weeks ago with a vasculitis flare and crohns disease flare along side arthritis making walking and basic movements extremely difficult. It was a very long night and we got home about 4/5am (yay! My bed is my faaaaavourite place!)
A week and a bit later I had my appointment with my consultant (yep my actual consultant and not someone else woohoo!) As always he was fantastic and we discussed everything that has been happening and how we progress as a team, getting things looked at and a plan in place. If you lovely peeps follow my blogs or my Instagram and/or Facebook page @glitterygutsx you will already know whats been happening with my health. If not, go ahead and check them out! But I do suggest a bag of crisps or a cuppa whilst reading!
So what’s the current situation with me? I’ll put it simply- active crohns disease, active Behcets disease (vasculitis), arthritis and mobility issues, bowel motility issues, extreme weight loss, horrendous pain, bleeding, an incisional hernia and fatigue. It’s a long list huh? You must wonder how I cope, i know I do. Be assured I am not full of magic where I’m magically able to cope every day and never be sad, frustrated or fed up. However I do like to think of myself strong like a superhero in the sense that I can fight what comes my way on the OK days!
The current plan: shit loads of tests, needles and all that comes along with being chronically ill. Many of you who suffer know the drill! Barium Small Bowel MRI, blood tests, Calprotectin tests, Pill Camera etc. I have been referred to several other clinics to see consultants about my weight, Behcets Disease and Arthritis/Mobility issues. I have had some blood tests come back with some things not being OK so that’s something I need to discuss with my consultant when he is able to as with some illness in my family history it has me and my family quite concerned. However usually it’s never anything too serious so hoping that’s the same for this time.
Now this is the good part (I guess?!) If these tests show signs of e.g active small bowel crohns or anything else wrong with my small bowel then I can go onto chemotherapy drugs such as Stelera or trial drugs which will have been approved and more on the horizon! Obviously I’m shit scared of injections but to think that I could hit remission with not only my Crohns but also Behcets and Arthritis; it’s like a miracle! Obviously there are side affects but not every person gets them and they do vary. I have already decided that if I even get into a place where I can manage these conditions, that the first thing I want to do is go to a festival such as T in the park or even a small festival! Within the UK of course. I also imagine what it’s going to be like if my perineal wound where my rectum used to be heals- when I go swimming for the first time! The smell of chlorine and the feeling of warm water and being able to stretch my muscles and get fit again.. there are just no words that can really describe how amazing just the thought is!
So, now I wait for my appointment dates whilst starting to raise awareness and sharing people’s stories through my Facebook page @glitterygutsx with videos of people doing intravenous and introvascular medications (subcut.) I’m hoping personal and inspirational videos of people injecting medication at home or people documenting their time having IV medication can help others who in future may have to go onto that medication, people who are in the middle of the medication and need more confidence and support to do either of them. It also gives me great joy in sharing these stories with the world to let everyone see these brave people!