Walk It! Completed

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So on Saturday I took part in Walk IT! – a sponsored walk raising funds for Crohn’s & Colitis UK. I – along with my wife, 3 year old son and my dad – walked 5 km around the centre of Bristol. It was a good day for walking – not too hot – although we did encounter some pretty steep hills (although that was mostly from where we parked the car to the start point – good old Apple maps…)

I did a Walk IT! last year too at Rutland Water which was lovely, but there is something extra about walking through a busy city centre on a Saturday for boosting the awareness raising potential. We even picked up a couple of donations as we wandered about.

The event was really well organised, marshalled and had a really nice feel to it. We have managed to raise over £400 for Crohn’s & Colitis UK which will be put to good use funding research and providing resources to IBD sufferers around the UK.

I thin k one of the highlights had to be all the volunteers gathering and cheering as we crossed the line – and then leting Jonah have another go because he liked being cheered so much!

There is still time to make a donation if you wish, by visiting the Justgiving Page.

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Small victories

Firstly, apologies for being a little quieter than I would have liked to be for World IBD Day. On Wednesday we got ‘the call’ from nursery – little man has spots, can you get them checked out. Turned out to be Chicken Pox II – The Return. So lots of stuff had to be moved and cancelled, and because the pox prevented him sleeping, we didn’t sleep either until last night. Hopefully he’ll be able to go back to nursery on Tuesday.

We have been very grateful for the help, support and advice of our GP surgery (urgent care nurse & GP), NHS 111 and out of hours GP and community pharmacist in trying to make him at least comfortable whilst this has been going on. When your child is having really high temperatures and symptoms which when Googled look terrible, it can be difficult to resist jumping in the car and heading for A&E – but I took my own advice from here and we managed it, and our anxieties without hours and hours of waiting.

Anyway, the new treatment that I was started on after my EUA seems to be working, and so yesterday for the first time in 4 years I was able to dispense with the little net pants I’ve used to hold my incontinence pads in place (see picture). I’m still wearing a small pad, but it’s of the type you can pick up in the supermarket rather than the full inco pad I had been wearing.

I have to admit it was a bit odd being less… restricted. However, for me it is a huge step forward to this wound being healed – less discharge so less need for a pad. And that is a step towards exercise and being able to be more active with my family and in life. The fact that I only have to have the wound checked twice a week, rather than dressed everyday has already made a huge difference to our lives – and so I am very much looking forward to it all being over!

So for now I just have to decide what to do with myc ollection of net pants. A ritual burning? Or perhaps I’ll put them on eBay – I understand there is a market for such things…

Mental Health Awareness Week – #MHAW17

The theme for this years Mental Health Awareness Week is ‘Surviving or Thriving?’.

I’ve done a really quick video talking about my experiences of low mood in the past – and whilst my IBD has been part of that, it hasn’t been the whole story…

So my advice would be, if you are feeling low, or that something isn’t right – talk to someone, and then get some support. The mental health aspects around IBD are not always at the forefront of our treatment plans, and surgery in particular can create or amplify issues – so don’t leave it unchecked and untreated.

Look mum I’m on the tele!

Today at work I had to drive to a meeting, and as I was driving my phone started going a bit crazy in my pocket. When I arrived it became apparent I had been featured (well my picture) on ITV daytime show Loose Women who this week launched a campaign about body image using the hashtag #MyBodyMyStory – fellow IBD & Ostomy blogger Shell Lawes (who is hosting #IBDHour this month) spotted this and encouraged those of us in the IBD and ostomy comunity to get invovled, so I sent a tweet last night and then forgot all about it.

So three minutes into todays show, this image graced the nations screens!

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This particular picture is about two years old, and I’ve put on a bit of weight since then, but you can just about see my scar and obviously see my bag.

There are people with IBD and ostomies who would not be comfortable doing this, and there will be people who ‘don’t want to see it’, so by taking part hopefully it normalises ostomy bags – the show has apparently shown at least one ostomy image each day this week. And well done to the Loose Women for allowing so many people to share there bodies and there stories.

You can watch todays show for the next week on the ITV Hub.

Shell has been capturing the images of those people in the IBD & ostomy community and sharing them on her Instagram.

 

Post EUA Update

So a few days have passed since my Exam Under Anaesthetic (EUA) on Wednesday. The procedure went well and I was discharged as planned on the same day. No collection was found and there was no evidence of anything being left behind which has stopped it healing.

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This is of course good and bad news – no evidence of infection or collection is good, but it does mean we don’t have a reason for the slow healing! In between the plastic surgeon appointment and the EUA I did have a weekend where the wound bleed quite a bitnmore than it had been – it may be that if there was something physical there it has now passed.

So whilst I did not come away with any answers, I did come away with a new treatment plan. I have been prescribed a medication called Ortem – a topical metronizadole ointment. As I discovered when I tried to get it fromt he pharmacy (mor eon that in a moment) it is not yet fully licenced in the UK – however there has been some very encouraging research into this kind of wound being treated with it.

Now the hospital pharmacy didn’t have it, but I was told it should be available from my usual pharmacy. I got home mid-afternoon, and was going to have a little sleep, but decided to just call them and check if they had it – I thought perhaps they might need to order it in However, it didn’t appear on the computer…

Now at this point, in need of sleep, a bit spaced out I faced a dilema. Having been told by the hospital they didn’t have it, but community phramcy should, and then by community pharmacy that they don’t have it but hospital might it would be very easy to get pulled into an endless loop of calling consultants secretaries and hoping for call backs, so I put my best patient advocate hat on and got on Google…

Within 5 minutes I was speaking to Natalie at the manufacturer, who had advised me that the drug was unlicenced but available as a special order, and that my regular phramacy already have an account! She just needed to email them an order form…

So I went down to the pharmacy to try and get things moving – Lloyds have there own process so had to call head office who were not immediatly able to spring into action… The final result of this is that the drug is now en route via courier, but because of the bank holiday I won’t get it until Tuesday – so we are getting there slowly…

Since Wednesday I have been really tired – napping each day for several hours despite good nights of sleep too – although I didn’t sleep well on Wednesday night. The left side of my face under my glasses has also swollen into what could be the BIGGEST SPOT EVER – but hopefully I can treat that before it happens.

So, it’s lots of sleep, some more patience and then maybe this wonder ointment can do it’s thing…

Wound Update

I realise that it has been a little whilse since I did an update about me and my wound, so here goes…

So, the wound where I had my anus and rectum (and internal pouch) removed (proctectomy) has still not healed – now nearly 15 months after the operation. This operation is known in IBD/ ostomy circles as ‘The Barbie Butt’. The cavity is still about 4 cms deep, and I’ve been having near daily dressings since May 2016.

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You can also see a little hole (top right) where there was previously a fistula. – this picture is from the end of March.

I saw my surgeon just before new year, he referred me to a plastic surgeon to consider closing the wound. The plastic surgeon said no – because unless we know why it hasn’t healed then it is likely to just breakdown again. His opinion was something has been left behind – could be a bit of pouch, a hair, a stitch – so the plan is for me to have an examination under anaesthetic (EUA) in a few weeks time conducted by the two colorectal consultants who did the excision. Hopefully threy will be able to work out what is going on and fix it, and then it will just have to heal, rather than need further surgery – but there really is no way of knowing right now.

I would be lying if I said I am OK with this. I am not in pain, able to work and do most things – although I have not really done exercise until very recently when a plan was put together. However the almost daily dressing changes have meant leaving work early and catching up and needing to be close to home at weekends (trips away are OK, but day trips are difficult) and of course that doesn’t just impact on me. I have had moments, particularly after Christmas and coming up to the one year anniversery of the surgery where I have been low and teary about it all. I am fortunate to have a very supportive family and friends.

So now I am trying to look forwards – hoping that after this procedure all will heal up and we can get back to normality. The nurses often comment how upbeat and positive I seem to be – I work at heard at keeping that way so I don’t get swept into a downward spiral. So when they knock me out in a week or so, lets hope that is the beginning of the end.

 

Is sleeping with a stoma this bad?

I recently came across a relatively new IBD blog – crohnsfighting.com. The author had a permanent stoma formed in November last year, having had 3 years with one previously. Her most recent post is How I Sleep With a Stoma and when I read it for the first time last week, something did not sit comfortably with me. I have re-read it now, and want to respond from my own experience.

So just to present my credentials – I’ve had three different ileostomies two ends and a loop. I’ve had my current stoma for just over two years.

It is my belief that you should not be having regular leaks – unless you have some kind of hernia or a skin condition. That Louise suffered this, and wrecked two mattresses and who knows how much clothing is unacceptable in my mind. So how do you avoid this?

  1. Check your template

This is always my first piece of advice when people are having leaks. Most of the time when I have had a leak it is because my stoma has changed size. This happens quite a lot immediately after surgery, but can continue for at least 6 months, and maybe beyond. Even a small change can make a huge difference. Your stoma nurse can help you with the technique of getting the template right.

2. Body shape change

When recovering from surgery or in remission, or if we get ill again, we can lose or gain weight. Sometimes it happens quickly, sometimes slowly. I put some much needed weight on a while ago and this created crease around my stoma which needed to be filled with paste. I also had to switch to a convex bag. Coloplast have an online tool – Bodycheck – but also advise consulting your stoma nurse. Stoma in a Tea Cup recently reviewed Bodycheck – you can read it here.

3. Cleaning

I did not know that you get products to remove adhesive until just before my second stoma was closed. I was not a happy bunny, having been in the ripper category for about two years! Using adhesive remover spray or wipes and ensuring you cleanse around your stoma is important to getting your new bag to stick properly.

4. Accessories

If you are prone to leaks, then using some accessories like rings, flange extenders, belts or supports can either prevent leaks, prolong the time from leak starting to trouser change time, or just give you more confidence. I use rings and flange extenders. The Brava Elastic Tape is the worlds stickiest thing (NB may not be the stickiest thing) and even if I have a small leak, will contain it until I can get a change done.

The blog does contain some good advice. I always use a mattress protector (I’ve found the John Lewis one, although initially expensive to be excellent and durable)  and I guess disposable bed pads could be useful if you were having a period of leaks.

I guess the bed linen & PJs is a personal choice, and yes stool stain is tricky to get out of white sheets. However, I would reiterate – if your stoma is starting to have that much power over you, then seek advice from your stoma nurse or supply company – you should not be having leaks so regularly!

On eating habits, you will have to get to know your own body, as everyone’s transit time is different. This will also alter depending on how much of which bowel you have left. Your bowel works 24/7, and more so when you eat. Some people find it better to have a small snack immediately before bed to reduce gas build up – so this is one you will have to work out for you.

Louise recommends an alarm for patients with newly formed stomas, and this could be useful if you are on strong painkillers, but again hopefully won’t be necessary long term.

Owning a stoma takes some getting used to, and part of that is recognising the feelings of full bag, the start of a leak (warmth or itch under the flange) and finding your own rhythm of emptying. For me however, the disease or trauma that gave you your stoma is thing you have to battle – the stoma is something you learn to manage, with support, advice and some trial and error.

If you are struggling, there are lots of Facebook Groups who can offer support, and I have always found the ia forum very helpful (and much easier to keep track of). Plus there is your stoma nurse and your supply company. And if you get to the point where you fear going to bed – then speak to your GP, you might need some counselling. We all need a bit of help sometimes – you are not alone in this.

So, there you go. Maybe I have been lucky. Maybe not – but hopefully this is of comfort to some of you.