A slightly dramatic few weeks

So, when I last wrote on this blog it was the day after seeing the duty doctor at my medical practice and I was feeling really rough. Her prescription of peppermint tea was not helping and I was starting to get very dizzy with flashing lights and sudden unexpected naps. I had been putting all of this down to my ‘stomach bug’ and was planning to get my fasting bloodwork done the next day. There is a reason that there has been no update since – and it’s a little dramatic.

On the day of my bloodwork (January 26th) I was feeling so tired, dizzy and breathless that I could barely stand long enough to dry my hair. It took me forty minutes to achieve that and I realised then that something might be wrong. My lovely cousin was a star and took me out to get my blood done, despite having only just finished a night shift, because I knew that I wasn’t safe to drive. Afterwards I went home and worked, reclining on the sofa a lot, because I am slightly crazy and still couldn’t quite believe that I was actually ill.

A few hours later I got a call from my doctor’s office. My haemoglobin was dangerously low and I needed to get myself to the ER immediately. I called Mum to cancel our Wednesday night Skype chat, called my cousin for a lift and checked myself into the ER.

The nurses who treated me that night told me they had never had a patient my age, with those results, able to walk into the ER. I should not have been conscious, never mind ambulatory, and if I had passed out at home my blood levels were so low that I would have been dead in a day or two. The tummy symptoms that the doctor had dismissed a couple of days before were actually symptoms of a large GI bleed and I was dying. The only reason that I hadn’t passed out was because I had lost a lot the blood gradually over several months (apart from the big loss in the final week) and so I had acclimated as my levels dropped. Thankfully the ER staff were able to pump me full of blood and saline (when they found viable veins!) and after twenty hours I was released on condition that I went straight to see a GI specialist that they had found for me.

He examined me, said that it was unlikely that I had IBS, and got me started on tests to figure out the real problem.

By the time I got home that day, my Mum had booked tickets and was due to fly in a couple of days later to look after me. I felt so much better thanks to all the transfusions that I couldn’t really understand why everyone was so worried, although when my tummy troubles returned at super-strength a day later it was lovely to have Mum around to look after me.

A solution!

The last three weeks have been a whirlwind of tests (some involving sedation, yay!), doctors and results. I have colitis (take that, duty doctor!), an auto-immune disease where the immune system starts attacking the gut. There are several forms and we are waiting for biopsies to tell us whether it is Crohn’s or Ulcerative Colitis, although there is no involvement outside the colon so UC is currently the favourite.

The doctor started me on high dose prednisone to suppress my immune system and allow the inflammation and ulceration in my gut to heal. I’ve been on the pred for ten days and I’m already feeling much better: my tummy has pretty much normalized for the first time in six years and I’ve got a lot more energy. In fact, I’ve got more energy than I’ve had in years. So many of the things that I’ve been putting down to “it’s just me”, “it’s because my back is bad”, “I’m imagining it” are getting better. Without being aware of it, the colitis has been making me feel really quite awful for a very long time and I had just got used to feeling that way.

Later this week, we will start weaning me off prednisone. This has to be done gradually because, in addition to supressing my immune system, the prednisone has shut down my adrenal system and it takes time for that system to recover. If I go off cold-turkey, my adrenal system won’t work and I could die. Again. When the prednisone dose is lowered enough, a maintenance drug will be introduced and hopefully that drug will stop my immune system attacking my gut with the side-effects that long-term prednisone use has. If it doesn’t, then we will go back to prednisone and repeat the process with another drug until we find the one that works.

Long-term outlook

My GI specialist is lovely and he’s relieved a lot of my fears. My uncle had Crohn’s and lost most of his bowel to it. You can imagine what I thought when I was first told what the diagnosis was! Apparently, the modern medications are much better and my GI specialist rarely has to operate on colitis patients. He is confident that it will be unlikely that I will never need surgery and I am determined to do everything in my power to make that happen. That means taking the medications he prescribes religiously, reporting any symptoms to him ASAP so that we can stop flares (which will happen) in their tracks before permanant damage is done and generally taking care of myself properly.

There is no need for me to follow any diets, my GI specialist says that he doesn’t care what his patients eat because none of the good research has shown a connection between food and colitis. It’s my immune system mistaking my gut for a foreign object, not a food intolerance. For now, until I’m healed, I just need to be careful about overly gut-stimulating food (caffeine, high-fibre or spicy foods) and even those restrictions will be gone when the medication is working.

The hardest part, for me, may be the part where I take care of myself and report any changes. So much of this has been going on for years, unnoticed, or has been dismissed by doctors that I don’t really trust myself to know what is normal and what isn’t. Re-educating myself is going to be hard but at least now I know that there is something there that does need treatment and it will be easier to insist when things don’t feel right.

My new GP started last week and I have an appointment with him tomorrow. Judging by the phone calls that I have been getting, it looks like my practice has realised that something went wrong in my care and they are trying to get their records updated and make reparations for it all. My GP will have no responsibility for my bowel issues, but he is going to need to get me a rheumatologist (for by back problems and EDS) and do a better job of monitoring my general health.

It’s been a tough few weeks (years, actually) but things are starting to look more positive than they have in a long time. As my health re-builds and my energy returns, I’m getting very excited about all the things that I will now be able to do and it seems like the future is brighter than it has been for a long time. I had not realised how tired I was, how much I had been not doing, or even how much time I had been losing to naps because it had been like this for so long. Now I will be a bit more like a regular person and I can’t wait to see where this takes me.

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