All about him

Well now, I promised you a “more exciting” blog than the last one. I’m just wondering if I may have over exaggerated the thrilling roller coaster that is my life?

In future blog posts, what I am hoping to do is present you with a weekly catch up of my training along with a side order of Crohns related information and anecdotes if Guy is happy enough for me to provide them. Of course, Crohns is not a laughing matter, it is a horrible disease with no known cure, and it is basically just shit in every sense of the word. But sometimes you have to laugh because otherwise you might cry. Plus, I’ve been told that I have “the worst bedside manner ever, the dog would do a better job”. The way I see it, it is my job to not let him feel too sorry for himself. In my view, stories that begin with a “do you remember that time when you shat yourself at Whipsnade?” are just the kind of thing needed to jolly him along a bit.

I know, he is lucky to have me.

Also, the word “training” gets me every time. Let’s be under no illusion here, I’m not an elite athlete. I sound like a dying walrus when I run and I sweat copiously and unattractively. There will be no records broken, no fast miles, no earth-shattering times. I’m just going to spend the next four months trying to shift my carcass over ever increasing distances. I’m very proud of how far I’ve come over the last three years, but I’ve spent the last three weeks not running at all due to a touch of tendinitis. My ankle has been looked after better than my children over Christmas – it has been subject to heat and ice packs, massages, stretches, supported, arnica application throughout the day, and I’m now trying to get back into running carefully in the hope that it manages to hold out through the training.

IMG_1315[1]
Yes, I’ll be the one running with BOWEL written across my back
If I don’t manage to make it to the start line in a healthy enough condition in May, then I will attempt it again at a later date. After all, I’ve paid upfront for twelve months for this domain name, so really, finishing the blog in May is not getting value for money.

In terms of training programmes, I have picked one recommended to me by a couple of friends, the Hal Higdon programme. There are many others, I am no expert on these matters. But I do know what the words Rest Day means and there are two of those bad boys each week. Plus I have no idea about heart rate zones and all this running talk. I have a simple Garmin which seems to do the trick but it doesn’t have a heart rate monitor. I’m only concerned about my heart rate if my ticker just stops working. Until then, it can do what it wants and I’ll just carry on.

The one piece of advice that I keep remembering is from a work friend who told me, “the thing you have to remember is that training for a marathon is all about getting used to running on tired legs”. Sound advice Andie! And that makes sense to me. Training them to feel really tired but then running more on them anyway.

Any other advice that people have will be most welcome, unless you’re telling me that I won’t be getting a sub 4 hour unless I give up alcohol, cake and life. I’ve pretty much worked that one out for myself, and decided that I don’t care.

Currently, I’m looking for practical advice, such as:

  • Best evening before meal?
  • Your favourite mid marathon snacks?
  • Is it necessary to lubricate the lady region? And if so, what with? I’m thinking yes on this – a half is fine, but surely chafing down below is going to kick in at some point over 26.2 miles?

 

I’m sure there will be other concerns and questions that pop up along the way, but really, food and lube is all I’ve got for now.

The training schedule starts next week. I’ll keep you posted.

On the Crohns front we might as well start at the very beginning, just as we are doing with the training. This might get a bit dull but I’ll try to keep it as upbeat as I can and tell you the story of Guy’s medical history in as uncomplicated a way as I can. If you’re only interested in the running, feel free to just scroll on down. Just bear in mind when you’re reading this that I am no medical expert (Harry Potter would probably be my Mastermind topic of choice) and that anything in this or any future blog post is purely based on our own experience. The disease affects everyone differently.

Basically, I know nothing and you can’t sue me. If you want to know more about the actual disease, then I highly recommend you go to a website that knows what it is talking about, such as the Crohns and Colitis website.

Guy only found out that he had Crohns when he turned forty after about a year of increasing abdominal pain. It goes without saying that he dealt with this in the usual manner of just ignoring it and refusing to see a doctor, because he is a manly man, and above such things as sickness.

However, it became more regular and quite frankly I had had enough of his whinging and dragging him off to the doctor like a child and we went through the next few months of him being diagnosed with a UTI, which would disappear with antibiotics, only to reappear again a fortnight later. During this time he just felt rubbish, lost weight, and his appetite disappeared. After a day of him screaming in pain and vomiting constantly, I decided that enough was enough and took him to A&E. The memory of Guy on morphine, telling me in an anguished whisper that the duty surgeon “stuck his fingers up my bottom” will make me smile forever. As will the memory of him leaning over a chair, pants down, as he had three injections in the arse.

Guy hospital 1
His best self pitying face

He was admitted and after a bit of a crazy time where they thought he might be some medical marvel with Bovine TB (that he might have caught from the cows he worked with), they decided that it was just Crohns after all. His bowel had become so inflamed that it had fused itself to his bladder, hence the multiple UTIs that kept masking the real problem. So, an operation was planned, he was discharged for the time being, and home he came. By this point he couldn’t eat anything with any lumps in it because it caused so much pain going through and Angel Delight, although a marvellous thing, wasn’t enough to stop him going down to eight stones (some people lose a lot more, but he is 5’10” so this was quite a significant weight loss for him) and so back he went into hospital as they decided if he waited any longer he would be too weak to have the operation.

Guy hospital 2
On the Crohns diet, about 9 stones here. 

The operation went ahead, bladder and bowel successfully detached from each other, the bowel resected with no complications and everything went well. Life continued and Guy had no medication and no dietary requirements.

Guy hospital 3
Sorry, very blurry. Too busy laughing at this dickhead.

Roll on five years and the pain was back and it was clear that the Crohns was indeed active again. Numerous hospital admissions for a week at a time followed with medication to try to control it until eventually he had another complete blockage and needed another emergency resection. Unfortunately, this time the operation didn’t go as smoothy as hoped. Basically, during a bowel resection, the surgeon is trying to cut out the middle part of a hosepipe, stitch the two pieces back together again and hope it doesn’t leak when the water starts running through it again.  It is tricky and there is a chance of a leak, and this is what happened here (although it’s not just water leaking into your abdomen, it’s your own waste, but you got that, right?)

Guy sprang a leak, he was rushed back into theatre a couple more times and then he remained in the ICU. He was obviously very poorly and his immune system very low and so he caught an infection called invasive candidiasis which is when the yeast that lives on your skin (we all have it, Guy is not just a particularly yeasty person) gets into the blood stream. It affected his heart, brain, eyes, lungs and kidneys.

Fi ipad pics 521
OK, I hold my hands up. He was pretty poorly here and I was very sympathetic. Shame he slept through it all. 

I cannot stress enough just how amazing the NHS was during the three months that Guy was in the three hospitals being treated. I did have a few wobbly moments, my poor mum had me blubbing down the phone to her a few times (and once my boss, when she rang at a bad moment, just like the total professional that I am) but apart from initially googling Invasive Candidiasis (“He’s going to diiiiiiiiieeeeeeeeeeeeeeeee”), I always had complete faith in the doctors and the treatment. He was coming home and that was that.

And he did.

Fi ipad pics 584
After three months in hospital, 50% of our offspring were really happy to have Daddy home. 

It was only when he went back for his outpatients’ check-up that they told him that it was amazing to see him standing and they had been sure he was a gonner, that I released quite how bad things had been. His organs were all fine apart from his kidneys, which were damaged by the yeast. He has stage three chronic kidney disease, which means that generally, his kidneys work well enough and he doesn’t require dialysis, so nothing to worry about most of the time.

I should mention at this point that it was during the last operation that Guy had been given a stoma, to help his bowel recover. Just for anyone who does not know what this is, a section of intestine is brought out to the tummy and you wear a bag to collect the waste. There are two types, a colostomy (which is when the large bowel is made into a stoma) and an ileostomy (which is the small bowel). Guy had an ileostomy, and he had this for two years. It was supposed to be reversed after a year when his bowel had had a chance to remover, but unfortunately, he sprang another leak and then because of this leak, caught sepsis. After another month in hospital, he was back out with his ileostomy still intact. After another year he was back for another bash at the reversal and this time it was successful.

Fi iphone upload Dec 14 054
Anyone want to hire me as your photographer? #capturingthebestangles

Once he was all plumbed back in again, of course that meant that the Crohns was more apparent and since then he has been battling with the usual Crohns symptoms that you have probably heard of.

I’m sure that you might be wondering why he didn’t just choose to have a stoma?

It’s not because of vanity. Having a stoma is great in some ways because it made him feel much better. There were some things that he had to avoid eating (the man clearly swallows noodles whole for a start) but his abdominal pain went down. But the downside is that you are walking around with a bag of poo stuck to your tummy. It needs to be emptied regularly and this means you have to go to the toilet every few hours, even during the night. You never get to sleep through the night and if you don’t wake up, it can pop and leak and no one wants to wake up lying in a pool of their own crap. No one wants to wake up lying in a pool of their husband’s crap either, but I’ll take one for the team here.  A stoma is great, but occasionally it isn’t so great and you still have the fatigue of Crohns which is not helped by never having a full night’s sleep.

That still wasn’t even the reason.  The reason was his kidney disease. I did say that his kidneys work moderately well, but they do not work very well with a stoma. Guy’s stoma was in the small intestine, and it is the large intestine that removes all the water from your poo. Because his stoma was in the small intestine, he was losing too much water that his kidneys needed and they started to fail. More hospitalisations and dialysis followed and then a very strict diet to keep his potassium levels low enough before he had his ileostomy reversal. So a stoma is great for his Crohns symptoms, but terrible for his kidneys.

This has all been a result of his Crohns disease. Some people think that it is just having the trots every day but it is much more serious than that. I realise that there are very serious illnesses out there, life threatening conditions that people are battling every single day, and Crohns is not one of those terrible things. But it was the reason why Guy caught candidiasis and then sepsis and why he has CKD. It is why he never wakes up in the morning feeling good. Guy’s good is our awful. It is why he hasn’t had a solid dump in ten years and goes more to the toilet every day than we do in a week. It is why he has joint ache every day, feeling just like we do when we have a bad cold and everything hurts, and he can’t walk far without having a rest. It is why he feels tired all the time. It is why he has an incisional hernia and looks like he is about to have our third child. It is why our toilet roll bills are so high. It is why every time my son tells me that he has tummy ache, I feel sick at the thought of him getting Crohns too (he says it hurts when he just feels full).

Everyone knows someone who has Crohns disease. It is a very embarrassing disease to have and the more awareness that the rest of us have, the more understanding we are of those who have it. Guy is very open about his Crohns because it means that his friends understand when he has to dash off to the toilet or isn’t feeling up to going out. If writing this blog gets one more person putting spare toilet paper in their cloakroom for their Crohns suffering friends, or one less announcement about how smelly the toilet is after the last person went (That is the worst thing you can say – they are pooing through infected manky rotten guts, guys, come on! It isn’t going to smell like springtime!), then we will consider it a success.

So be cool. Buy air freshener. Hate Crohns.

So that’s it for this week. Next week will hopefully see the end of week one of The Training Plan and still have me in full use of two ankles.

Have a good weekend, all!

2 thoughts on “All about him

  1. Thank you for posting this very frank and very interesting story. I have an acquaintance with crohns but I never really knew much about the illness, it sounds terrible but you have approached it with great humour which I’m sure helped. I look forward to reading your updates (running and crohns related).

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s