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!)

New hospital visit, new info!

Well, the last 21 days have been HARD and I have counted every blinking second! In almost a month of no eating I had to tell more people that I have Crohn's than I have done in the past 6 years.

In a way it was really re-affirming. Many people who I work with or know through other people never had any inclination that I was sick and I had many comment about how I did not act like a sick person.... had to explain that I am not necessarily sick, just living with a chronic condition... a complex conversation to have with some one you sort of know at a wedding!

So, after an emotional and some what shell shocked few weeks, I had yet another clinic appointment today with the lovely prof.

After much convo with MH last night about how he is doing with all this, how he is coping and how we are both coping I put a proposal to him. Lets talk to the prof and see what he thinks about, after 3 weeks on the elemental diet, can we look to starting to scale up so I can enjoy my fish and chips on the wedding day and perchance a few meals out on the mini moon, maybe? I stick to the plan and when I get back from my mini-moon, we talk progress, we talk surgery, we talk options.

In this, I take back control. Take that demented guts, pow. And the prof agreed! So, after a impromptu meeting with the dietician I have confirmed the list of my safe foods that are also low residue. First stop, Marmite on white toast!

Now I can focus on the things that matter; my health & my love. My health is being looked after on my terms now (not really a compromise, more of an easing) and my love can have more attention and we can, after what feels like and age, focus on August cos WE ARE GETTING BLINKING MARRIED!!!

PS. The symptoms are lessening. Can't remember when I went to the loo so infrequently in a day. The fistula seemed to have let out a rather dramatic dying gasp on the weekend which was not pleasant. But, in an unexpected development, my body saw it off all by itself! Fingers crossed this is the right choice.... lets hang on and see! :)

Craft zone

Hooray! I have an OFFICIAL craft zone, woo! An enthusiastic eBay purchase of a 50's Formica table meant that we spent Friday night re-arranging our little flat to accommodate it and create and official craft zone!

OK, so it needs a little organisation still and I think my next project will be to make a funky retro-fabric cover for my sewing machine but I love it!

Craft Zone!

And the I managed to finish off the owl & pussy cat models I made for CC's wedding and they went down a storm! The did not make it onto the cake in the end as there we cakes plural so they took pride of place between the too! The picture I took of them is not brilliant but the pudding of a owl looked very happy to be in the embrace of the lithe pussy cat :)

 Roll on the next project! 

A social whirlwind

What a weekend! After a manic Friday night resolving my craft area issues (see blog article), a slight rush job to get the owl and the pussy cat done and being up at the crack of dawn to bake gluten free quiches (3 baked before 9am!), we attended the wedding of CC in the country side and the sunshine!

The intervention of the St Paul's carnival meant we were very nearly fashionably late and turned up carrying the hampers and booze that we had planned to drop off at the reception venue but had no time to do so. Luckily the very understanding groom let us stash it all in the boot of his car so we could pootle into the church unencumbered.

It was a gorgeous little church and gorgeous ceremony with gorgeous weather and the ceremony was, well, gorgeous! The walk to the reception was DEFINITELY more than the mile we were told but it was fun and the company was as good as the weather!

The night was a raucous one with much dancing and laughing and ridiculous photographs to remind us all of the occasion. And the events did not stop there. After a sluggish start on Sunday (a picnic hamper of booze probably not having helped the situation) MH and myself bundled into the car and we were country-side bound for a family BBQ.

And this is where I hit my wall. During the events of Saturday, I have to admit that I was quietly proud of myself for not losing the plot when surrounded by lots and lots of delicious food and felt weirdly glad when MH (a few beers in, it has to be said) asked if I wanted anything from the BBQ. It was lovely to think I was being so 'normal' that he would have forgotten, even for a moment, that I was on the milkshake plan. But I could get myself lost as my close friends there already knew about my special requirements so I was able to quietly drink my shake with no real fuss. But Sunday was different.

The gathering was a lot smaller for a start and MH was the only one there who knew, as I had not really had the opportunity to tell the in-laws and, besides, I wasn't sure I wanted everyone to know...

Anyhow. It felt pretty awkward as I felt like I was being really rude and offensive by not eating any of the lovely grub that MH's lovely Aunt had knocked up for us all. I'd brought my shake supply along in a mini cool bag but it stayed shamefully hidden in my handbag as my awkwardness grew. Ridiculous I know. So when it got to the point when I HAD to say something, it all came out wrong and I felt flustered and embarrassed and not quiet sure what to do.

Annoying. 13 days in now and I feel like I took a bit of as a backwards step in my 'coping' with my new normality. I think my usual manifesto 'accept, ignore and move on' is not working so need to work out what to do instead! But it is not going to distract me from the fact I had a great weekend and am lucky to have MH. friends and family who want to support me through this.

Craft EPIC fail

So, dear CC's wedding is FAST approaching and I have been uber busy with the nuptial craft and craft projects and battling with my brain over the developments of the past few weeks. I am EXHAUSTED but, all in all, very content with my lot in life!

But there has been a craft epic fail creeping up on me the whole time. If you've read my post past you will see some pretty nifty craft project emerging. I admit I have been a wee bit obsessed with making purses and bags. Which have been duly made. But I realised this morning that my BEAUTIFUL 80's full skirt dress that I want to wear for Saturday's celebrations has no accessories to go with it. NONE. Not even shoes. Bum. Bum, bum bum bum bum.

And as my friend Bib's happily pointed out, I should have been making one to match my outfit NOT one out of Starwars fabric. Though this is infinitely cool, it does not, in any way shape of form, match the dress.

80's superb-ness!

So now I have to fit in a rush shopping trip to try and match these colours! Man, I hope I can sleep all Sunday after this week! Not even my emerging craft skill could get me a bag made by Saturday. NO TIME!! Image CC's face if I had to explain that her cake toppers were not done but my shoes and handbag are FABULOUS! 

Ah well, gotta love a shopping challenge :) 

Partial craft success!

Hooray! The cake toppers for CC's wedding are almost done! The owl and the pussy cat though, sadly, will not be furnished with a pea green boat as it became painfully clear that I should have started this project about 2 weeks ago!

Still they look really cute! Just the fine detail to do tonight (which I may scribble on in pen as my fine brush work SUCKS) and then we are done!

An owl and disjointed cat

A contented little owl! 

Just have to finish these, deliver some table cloths to CC, shop for shoes and a handbag and a hair thingy (see 'craft epic fail') and bake to gluten free quiche Lorraine. All by Friday night. And work full time in the meantime. And all this with no food in my... should be interesting! 

Day 8 and all is...well?

I have decided that is this 'diet' is to stand any chance at all of surviving, I do not have a place in my life for the Fortisip food replacements. None. At. All. So bring on the shakes.

I honestly still do not know how I feel about this. Lunch time makes me feel miserable but I can't let myself focus on that as today has been somewhat of a breakthrough. Trapeze on Tuesday was EXHAUSTING and painful as the my newest fisti-bump is in a very uncompromising place for balancing on a bar, but I am glad that I went. Normality, or my slightly skewed semblance of it (as I am aware it is not in everyone's fortay to go swinging from ropes as a pastime) is so important to hang onto at times like this, where everything else feels so way out of my control. But I am trying to balance this out so that I am not going into hyper denial and ignoring the very blatant fact something ain't right!

Yesterday I did feel better for the exercise, as much as I am loath to say it! And today, I feel even better. My stomach has been making the noises I would normally associate with a complex GCSE chemistry experiment and that has been a little embarrassing at times and my tiredness shows no signs of abating but my general pain and discomfort from the fistula seems to be abating.

Fingers crossed that this is doing the trick. I try to be positive, even with all the failed treatments I have had at treatment in that past, so maybe this is actually getting me somewhere. Maybe.

Which is best; not eating properly ever again and forever being sustained by the soul-less nutrition that is Fortisip or major surgery.  Is that even an option? Some knowledge would be nice...

No real reason for this, just loved the van!