Sunday 30 July 2023

Explain yourself Tracy - where have you been

 The answer to where have you been is in hospital for a while and having lots of scans and tests and at home feeling more ill than I have ever felt in my life.

 Remember this time last year when I was having all those bowel problems and ended up being checked for all sorts - well it came back but far worse, not just the bowel problems, crippling pain in my abdomen with spasms and I couldn't eat food because that just made everything a hundred times worse.

 I'm out the other side now, eating again, today is my first day pain free in months and feeling human again - which is just as well as today is our 12th wedding anniversary and yep you guessed it we are off out for  a Michelin starred meal later.

 So what was it you ask ...... I have Crohn's disease - yep MS, dodgy thyroid and now Crohn's as well - my immune system really does hate me and it is absolutely out to get me.

 I've known I had IBS for at least the last 30 years but it now looks like it's probably been Crohn's all along and this has simply been a massive flare up of epic proportions.

 Today is my 2nd day on a course of steroids to bring down the inflammation in my intestines - there's about a foot of them inside which were so inflamed that solid food couldn't get past (yeah I've been living on yoghurt and soup and even that hurt) 

 So what does this mean - well in terms of the MS it could mean big changes. The steroids are a decreasing course for 3 months and if the first 24 hours are anything to go by then they're working and it's all going to be good. If they don't work then Crohn's is treated with an infusion of a medication.

 The treatment is called Infliximab - the brand name for natalizumab - 'why does that sound familiar' that little voice in your head says - well that's because natalizumab is also the medical name for Tysabri 

........ well isn't that convenient 

  ......... Kind of I guess 

 Long term if I need to have this treatment for the Crohns then I will need to stop the Ocrevus and move to one of the Natalizumab based treatments but thats going to be at least 3 months down the line and well between my Neurologist and my Gastroenterologist I guess they'll work it out.

So my humble apologies for just up and disappearing for so long - my MS really hasn't been something I've thought about in all this it just wasn't a priority at all and I've been signed off work completely since the start of July and that runs until the middle of August but I'm planning on starting back working tomorrow.

Hopefully I'll be updating more frequently again now I'm human again.

Hope you're taking care of yourself and living your best life xx

Yikes 2 posts in a month

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