So, what's happened in the past few months to make me quit writing? Truth be told, life with a J-pouch for the past 6 months has been anything but smooth. In the past 6 months my emotions regarding my illness have been all over the place. Ever since my diagnosis, I've always been a big 'talker', wanting to share my story everywhere in the hope that it might help someone else in the same position. For years I've been into blogging, campaigning and spreading the word about IBD.
But about 6 months ago, when my J-pouch problems started, my inspiration just dried up. I had no incentive to write anymore. I no longer felt like I could put a smile on my face, or a positive spin on things. My health was just crap. No buttering it up or making it seem better. It was just downright, all round rubbish, and I felt too upset to write about it or share it anymore.
No major emergencies have happened in these 6 months - but instead it's been one, long, continuous drag of ongoing problems that slowly wore down all the positivity I had left. After being initially diagnosed with pouchitis in March following a perfect first 3 months, I thought it was something I'd quickly be able to solve. After 4 weeks on Metronidazole, with plenty of side effects but no improvement in symptoms, I started to feel slightly less upbeat. Then I started a 4 week course of Ciprofloxacin, which seemed to clear things up, until I came off the course and a week later the symptoms came back again, just as intense and just as painful.
I spent a couple of on-off nights in hospital during this time, one time being admitted to a random hospital I did not know through A&E unexpectedly, which was a really frightening experience. It was down here in London where I'm studying, so I had no immediate friends or family around who could help. I spent a night being prodded and poked and had many tests - including scans and being given fluids - none of which gave any definitive answers.
I went back onto Ciprofloxacin again, this time for 6 weeks, then immediately after finishing the course started onto a powerful prescription probiotic, VSL3. This helped a lot, and I finally thought I'd seen the end of my problems. In the meantime, I had a scope of the pouch which confirmed moderate inflammation. However, a few weeks ago, after accidentally skipping some doses of VSL3, the pouchitis is back again and I'm on yet another course of Ciprofloxacin. I narrowly missed being prescribed steroids this time, which I'm very keen to avoid.
My disease is now classed as 'chronic' pouchitis, as I've been on antibiotics more than 25% of a year. I'm not sure where treatment will go from here. I'll continue on the Ciprofloxacin as long as it is needed - but if that stops working, which it may well do - I'll have to look at other options. The next option is a different antibiotic; then back to standard IBD treatments: 5-ASAs, steroids and ultimately, immunosuppressants. We're a long way off that stage yet, but it's a possibility in the future. The final straw, if all else fails, is going back to an ileostomy, something I really don't want to think about unless I have to.
Pouchitis, I've learned, is very much like Ulcerative Colitis, although the treatment is very different. The symptoms involve stomach pain and cramping; feeling feverish, tired and sick; diarrhoea and urgency; even soiling the bed at night. When this had been going on for months at a time, it was just soul destroying.
I think it was particularly hard because I always saw my reversal surgery as 'the end' of all my problems. Yet since my reversal, I've continued to be sick. I finally realised the hard truth that there is no 'cure' for this condition, not even after all the surgery and treatment I've had done. This took a long time for me to get my head around and cope with. I'm still not 100% there, but I'm finally accepting this and learning how to adapt my life to cope with things.
Don't get me wrong, these past few months haven't been 'bad' in lots of other ways. I've been doing work experience most of summer; I've gone into my final year of university and am in the process of applying for postgraduate study; I've been away on holiday and I've turned 22. I've met a wonderful new person in my life and enjoying all that has to offer. There's plenty to be positive about.
So, what finally made me come back? I've become a lot more accepting of my situation, and feel ready to talk about things again. I've also met a few inspirational people with IBD in the past few months - some of whom were in a very low place with their own condition - and this inspired me to get back to writing. I know my blog was very helpful to pre/post surgery readers alike, and I want to get back to providing that. I think there's lots that I can talk about, and I've got lots more ideas for articles, rather than just rambling about mundane life details :D
Thank you for reading - and look forward to getting things back on track!
Me and my best mate at my 22nd birthday party :)
Thank you for coming back and sharing Ellie. X.
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