Wednesday 10 July 2024

Still here....

Yikes.  Over 6 weeks since my last post, during which A LOT has happened.

Not all of it good.

Having two warring autoimmune conditions, constantly at each other's throats, is wearing to say the least.  Caught in the middle there is little I can do except try to placate both factions.

Earlier this year, following extensive investigations, my Colitis diagnosis was changed to Small Bowel Chron's Disease.  Same shit (literally), different disease.  Over the past 10 years, the MIS-diagnosis meant that I've been on medications which have failed to have any discernible impact on the condition.  I've said no end of times that they've made no difference, and have just got on with trying to manage a disease which has made my life a complete misery. 

Despite several emergency hospital admissions over the years, during which I've been patched up then sent home, with promises of further investigations, nothing proactive in the way of a long term treatment plan has happened.  

In desperation, late last year I got my MS nurse involved, to poke my IBD team, who I felt, with some justification, were, quite frankly, pants.  Within a few weeks I had appointments for yet another colonoscopy, small bowel MRI and no end of blood tests, the end result of which showed I had Ileitis and SB Crohn's. 

Since then, things have moved only slightly less glacially, until in a fit of pique, I read the riot act.  Further  recent blood tests showed my inflammatory markers were through the roof and finally, FINALLY, after 10 years, I now have a proper treatment plan.

While that is most definitely A. Good. Thing, I'm moving into uncharted territory, as I have been approved to start on a biologic called Vedolizumab.  Due to my MS, I can't have any of the front line biologics, which can have a disastrous effect on MS by accelerating demyelination.  Obviously, they can't treat one disease, only to make the other one worse.  I'm doing lots of research, and due diligence, and Vedo is one of the few biologics which are suitable for patients with MS.  It's not without its challenges, and side effects, but it has the major advantage of being gut-specific, so although it will act as an immunosuppressant in my gut, I shouldn't fall prey to the risks of infection from a systemic treatment, which affects the whole body.

Pending more tests, I should be able to have my first of three loading doses by IV infusion in the next month.  I'll have to spend several hours in hospital for each one, to check I don't have any adverse reactions.  After the loading doses, I'll self-inject every two weeks as maintenance.  Fingers crossed it works.

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