Forgive me father for I have sinned...

...it has been many YEARS since my last post. And it has been an interesting time for sure.

Since my last post, MH and I have been on an EPIC honeymoon to Oz, celebrated our 1st wedding anniversary, fast heading to our 2nd, moved house and opened our own business. Oh, and I had major surgery, twice, in 12 months resulting in a temporary stoma, Dolly.

First hint I had that things were not going so well was just prior to our honeymoon. I developed a massive and very visible/ painful fistula on my inner thigh who's arrival marked a new phase in chronic disease.

As those of you who live with chronic disease, you know that sometimes, every day is a challenge. And, for the last 12 - 18 months, I feel like every day there has been at least one thing that has happened to make me feel 'abnormal'.

I know I have spoken of this before, and I always feel really bad for using the phase 'normal'.

What is normal ?

My normal would probably blow most peoples brains; my daily routine of medication, exercise, diet, pain management, stoma tending and sometime wound dressing would test a saint. I sometimes find it far, far from easy. But I cope. Because I have to. Because what is the alternative? Roll over and give up?

But I am far from saintly. In fact, I am currently reviewing my attitude as I do feel that my stubbornness has contributed to the mess I was in 10 months ago. I did not listen to my body and ended up in A&E. Twice. Go me.

Long and short, I ended up with a systemic infection after the fistula on my leg went for it big time. I'd been warned by my specialist when I was admitted 3 months before with the same issue that a temporary 'de-functioning' was fast becoming the only option. It was a massively hot June and I was in a hospital ward struggling with emotion and coming to terms with having gone into shock from a nasty penicillin allergy (freshly developed; who says people can't change?)  I had THE MOST rude doctor tell me he didn't understand why I had not yet had the surgery.

OK, so, here is another development in our lives. Me & MH have decided we would quite like to start a family. And, naturally, the ol' disease kicks in. A-mazing, and, with the advice of the fabulous staff at the BRI IBD department, continued with a preventative course of care as I had been lead to believe this was the best course given surgery could affect conception.

I tearfully told Dr Rude (not a member of my usual treatment team it has to be said) all of the above and he, very bluntly, told me that in my current state I would not conceive at all. Wow. Think they surgically removed his sense of sympathy at medical school.

Any-hoo, 3 months later, back in as an emergency and being prepped for the operation loving know as 'de-functioning' I had a crash course in the stoma operation. It was all done keyhole, so no massive incision to cope with, just a general. Apparently they were very worried about me coming round as I took a bit longer than they were comfortable with. I had to inform them that I had come round, no one was there and, being exhausted from 5 days pain and no sleep I took advantage of the morphine, warm bed and fuzzy head to sleep!

After 4 days in hospital and an orientation course from the lovely Stoma nurse S at the BRI, I was SO not ready to go home, but home I headed. And was not prepared. At all.

The next 4 weeks passed in an emotional blur of awkwardness, lack of sleep and over emotion. I had to deal with a fast changing body, leaky stoma bags, still active disease and a 'lets ignore this attitude' which was not healthy.

I am exceptionally lucky. I can imagine going through this alone, and the thought is horrid. MH has dealt with this admirably and shouldered his fears, concerns and worries along with carrying my insecurities, mood swings and bloody-mindedness with empathy and, above all else, a loving patience.

After coming through what my specialist (sadly no longer the prof by the epic TC) called 'dark times' recently  my 'normal' has changed again. Normal for me is a 7 day flat out week where the stoma and my disease are just a part of the overall hectic melange.

I no longer suffer from a chronic illness, I live with it. It is part of who I am and does not make me. 10 months on from THE op, the future is looking pretty rosy. Family is still very much in the plan for MH & I but our attitude to it is much more relaxed. I don't hate my stoma but I sometimes hate the brutal situations it makes me cope with.

10 months on, still dealing with mildly active disease and an ulcer on my skin (due to the adhesive on the bag) it has become a mild distraction in my day. Now, the end is near. I am currently undergoing 6 weekly reviews to see what the reversal can happen. And now, a new challenge; how will a reversal be and how can I get myself & MH ready for all that entails.

Watch this space... (and it won't be a year between posts this time!)