On a lighter note…

This is my second post of the day but something else very important happened today.

After suffering the trauma of a broken iPhone a couple of weeks ago and having to resort back to one of my old – and quite frankly inadequate – handsets, I am back in the land of iPhone users. I am now the proud owner of a brand spanking new iPhone 4s.

How very sad and shallow I hear you cry! Well, i put my hands up in defeat and admit to the world I am a complete gadget addict. So much so that I am actually considering adding ’Using my iPad’ to my list of hobbies and interests on my CV. I love my gadgets and can quite easily spend hours surfing the web, exploring apps and now, my new-found interest, blogging.

So there you have it. I have confessed my sins (well one of them anyway). I love my iPhone/iPad/iPod (and anything else I can stick an ’i' in front of)! Now that I have my complete set of gadgets by my side once again, I can sleep easy tonight.

Zzzzzzzzzzzzzzzzz   

The waiting game

Today my husband was in hospital for a double op – one to try and fix his kidney problems and the other to check on his open perianal wound. The poor sod, being attacked from all avenues!

On the whole the surgery was a success. The stent in his left kidney has been removed along with 2 large stones. These will now be analysed to try to determine what sort of stones they are and if there is any way that they can help prevent my husband getting more. The surgeon did say that there are still several small stones in the kidney and unfortunately the only option is to pass this the normal way… ouch!

As for the wound, well… my husband’s gastro surgeon said it was looking good and that we’re obviously doing a good job at keeping it clean and dressing it etc but he was honest and said that it was still a LONG way from being healed. In actual fact, there is part of the wound, the bit that has a cavity going into the colon that is unlikely to ever heal properly! We’ve been told that we’re basically waiting until the point when they can operate to remove a section of his colon/bowel and make his ileostomy permanent. We knew this was probably on the horizon so it didn’t really come as a shock but it’s still a little unnerving to hear. The surgeon has said though, that it will be many months until they do this. So I guess the waiting game continues.

We’re hoping that now the kidney business is hopefully on the mend, my husband will be put back on his proper crohn’s meds (Humira injections) and, fingers crossed, this will ease the crohn’s symptoms that he is still suffering with. If we can get on top of that then all the rest (managing the wound etc) is easier to cope with.

We have an amazing holiday booked for April so that is our goal – to get the crohn’s symptoms under control enough that he can really enjoy himself.

I’m optimistic.

Hiding from the hygienist

Today I had an appointment at the dental hygienist. Nothing was wrong, just a routine check up, but for some reason a visit to the dentist seems to bring out my inner child.

Better get flossing!

Now my teeth aren’t too bad – a little crooked perhaps (I should have listened to my mum when I was young and had that brace) but on the whole they’re in reasonably good nick. However the notion of stepping foot inside the dentist’s surgery sends a chill down my spine and makes me want to run for the hills – even when I know that my teeth are fine! I’ll be honest, I brush my teeth twice a day but floss less regular. It’s not that I’m lazy. I’m just… errr…ok, ok… a little lazy with the flossing at times!

Just recently I’ve changed to a new dental practice and in the process seem to have gained a separate hygienist alongside my dentist. Great… now I get double the torture fun! If dentists weren’t scary enough, their evil counterpart take that fear to another level. I have found myself frantically flossing and gargling this week in the hope that the hygienist will not notice that I’ve been slack over the Xmas & New Year period. As I try to brush away my sins, I mentally rehearse what I will tell her when she asks how I’m doing with my teeth cleaning regime.

It’s ridiculous really. A grown woman feeling like I have to prepare myself for a telling off – it brings back memories of being at school and getting caught by the Head of Girls for trying to sneak out the back of the field to meet a boy from the local comprehensive!

So, at my appointment today, in the end I did what any sensible adult would do. When asked how the flossing etc was going by my hygienist, I looked to the floor, shuffled my feet from one to the next and muttered under my breath about promising to do better in future! And who knows, maybe I will. The consequences if not may well be much worse than a telling off – I may have to contend with the dreaded drill…. eek!

The witching hour!

Can Crohns tell the time? Does it mutter to itself…? “Hey it’s 10pm, I’d better start causing some mischief!”

Image via Wikipedia

How can symptoms disappear during the day and then start up like clockwork at night and into the morning? It just doesn’t make sense – and it does this everyday!

It’s great that my husband gets some time in the day to recover from being so poorly in the night but it would be so nice to have a day start on a positive note for once and then not spend the day with the knowledge that as soon as dusk creeps in the problems will be back with a vengeance.

I hate waking up to hear him in so much pain. To see him with his head in his hands not knowing what to do with himself. And the worst thing – there’s nothing i can say or do to help him. Not a god damn thing.

I wonder if anyone else with Crohn’s finds that their symptoms are worse at night / in the morning? Why might this be? I wonder if the body gives off signals that it’s time to start winding down for the evening and get ready to rest and it is at this moment that evil Mr Crohn’s wakes up and comes out to play!

I wonder…?

And it was all going so well.

Two and a half years ago mine and my husband’s lives changed forever. We were about to walk down the aisle to swear our love and commitment to each other in front of our closest  family and friends. It was also at this time that my husband was diagnosed with what the doctors initially thought was Ulcerative Colitis but in actual fact turned out to be Crohn’s Disease. It was then that what was supposed to be one of the most exciting times together – that period of being newlyweds – became a slow and steady battle with deteriorating health.

The things that my darling husband has had to cope with, particularly in the last 6 months, is quite frankly something I wouldn’t wish on my worse enemy. Yes, there have been periods of remission from this awful disease but just recently it seems to have taken such a grip that we’re both finding it tough to keep the light at the end of the tunnel in sight.

It feels like so much has happened since my husband’s diagnosis! So it turns out that he has what his consultant says is one of the worse kinds of Crohn’s - perianal Crohn’s. There’s the obvious Crohn’s flair ups but he’s also had to contend with numerous abscesses and fistulas. Surgery on these caused a pulmonary embolism a year ago – that was a scary time! 6 months ago he had loads more surgery to remove infected tissue and drain the abscesses etc and at the same time he was given a split ileostomy. Cutting away the infection has left him with a huge open wound which, 6 months later, is still a very long way from being healed. We are yet to see the benefit of the ileostomy as his Crohn’s flair ups are as bad as ever at the moment. He is now also suffering from kidney stones which seem to be bringing with them a whole new world of issues. Only a month ago he was in Intensive Care fighting septic shock because of those damn stones!

The list is endless and I have only really touched the surface in this post. To be honest, without going into some gruesome detail, it’s very hard to really get across how bad things have been and still are. I’m sure that you will learn more about our situation as we continue with our blog and I have no doubt that both my husband and myself will find it therapeutic to off load some of our feelings as we continue through this Crohn’s hell.

I hope that our posts in this category won’t all be doom and gloom. My husband will start to improve soon – he has to. And as soon as he does, I shall be shouting that from the rooftops. So watch this space!

The story so far…

Ok so where do I start? The beginning I guess.

My husband and I have been trying to get pregnant for a year and a half now. We always thought that it might not be easy as my husband has some health issues and has been through a particularly rough time of it recently. So after a year of trying, with no baby in sight, we took ourselves off to our GP to find out what the problem was. All the usual tests, hospital referrals etc ensued and to cut a long story short, our initial worries were confirmed - we are unable to fall pregnant naturally due to my husband’s health and medication. So we will be taking the route of IVF (most probably with ICSI) to start our family.

That pretty much takes us up to where we are now. We haven’t actually started the IVF yet – we have our consent consultation early Feb and that should kick the whole thing off. I’ll be keeping a regular diary now of our journey. Sharing the highs and the lows (hopefully we won’t have too many of the latter) and our feelings as we go through the ivf process.

Wish us luck!

Newbie blogger!

So, here we are. My first blog post. Hmmm… what to write? I feel like it should be something witty or something powerful that will draw you in and make you want to visit our blog again.

But it’s just me. Saying hello and welcome. I suspect this ‘blogging journey’ will be an interesting experience, certainly for us at ‘The Kiln’ and, who knows, maybe even for some of you out there!

I’m not sure who is going to read this or even if anyone will read it.  I think it is more about helping us cope with the things going on in our lives.  But to those of you who have found us and are reading, I hope you find something of interest, or perhaps even helpful, and thanks for stopping by.

I look forward to learning my way around here and perhaps a little more about myself and my husband along the way.