Hello! It’s been a while since I updated you all on my health situation and to be honest I didn’t really know everything myself!
Today I had an appointment with my IBD Consultant in Aberdeen Royal Infirmary, he’s very good and always on point with helping me and has done since I was diagnosed. My barbie butt wound has been causing me issues for quite some time and I can’t lie about that. Don’t get me wrong, having that operation done was the BEST decision my surgeon ever made because all I was doing was sitting on the toilet passing pus, blood and mucus constantly all day, some days upto 60 times. Anyway, this wound has been bleeding a lot and I was doing OK for a little while with the discharge as it seemed to go away and I didn’t need to constantly wear pads every day and keep changing them.. now it has gone back to how it was prior and it’s a pain in the butt – pun intended. My wound has also split open and is bigger than what it was before *sigh*. I have also had issues with my stoma retracting which is a whole new kettle of fish! It was never a problem until these past 6 months.
After examining me, my consultant has decided I need to go for another Pelvic MRI scan as he fears there may be another pelvic fluid collection due to the pelvic and wound pain and if it comes back with fluid then I will need more surgery to have this drained. He has also decided that I will start a new treatment (new to me as I have tried everything else) called Stelara which the first dose is an infusion and then injected every 8 weeks. Obviously there are side effects and that’s what I am more nervous about but at this point I really don’t have anything else to try because I’ve been on everything else and steroids are not an option due being immune to them. My Rheumatologist also wants me on the Stelara and both my Consultant and my Rheumatologist have said that this medication has the potential to help both my Crohn’s Disease, Behcets Disease and my Inflammatory Arthritis and Bursitis! I was given the information about the Stelara home with me today to read over and see the side effects, how it works – just everything I need to know.
In preparation for the biologic drug, I had a TB (Tuberculosis) check and another set of bloods that is routine for someone away to be put on a biological drug and they got the butterfly in first try today! The sugary tea this morning must have helped so a small win for me today, small victories! So when they come back I will more than likely get a call. I’m also still waiting to have my small bowel looked at via the Capsule Camera, Tonsillectomy and my four wisdom teeth removed, which we hope all of which will be done before I start the new medication, so one can only hope! I am super nervous as I mentioned before but I really won’t know until I have tried and I am really keen to try and get some of my Chronic Illnesses under some sort of control. My pain relief has also been changed as the codeine was giving me the worst constipation and blockages I have ever had and making my Chronic Migraines worse. I know it’s a lot to read and if you have read all through this then thank you, truly!
Hope this keeps all my followers up to date and any friends or family who read this. It’s been a day of mixed emotions but time will only tell how things will go.
I also want to say a big thank you for all the support I have received – It has been awesome!!
Lots of love
Glitteryguts and Lola Stoma. x