A very lovely afternoon (apart from the roadworks)

On Saturday I journeyed to Birmingham for the Purple Wings Charity Conference. There was also a fundraising ball in the evening that I wasn’t attending, but I’ll come back to that later… If you have to go to Birmingham centre in the next little while I highly advise getting the train…

Purple Wings raises funds to award grants to IBD suffers and ostomates, to help them to regain their confidence, or fund some time with family after surgery. The conference was an opportunity to hear about the work of the last 12 months, launch the 2018 calendar, and hear from some individuals about their IBD and ostomy journeys.

There were also stalls from various stoma equipment manufacturers and distributors, bag cover creators and clothing companies, as well as the local Crohn’s & Colitis UK group and ia support branch.

The charity’s strap lineΒ  is ‘Recover, Adapt, Overcome’ and the founder, Lauren, is so driven to raise funds and help people to do just that. She was very humble throughout, giving the various speakers the lime light and a chance to share their experiences.

I didn’t take photos or video, and won’t try to capture the speakers words for you. Needless to say they were emotional and powerful, and I was sorry to miss the input from the evening speakers.

It was a bit like walking into Facebook come to life for a while, meeting and seeing people I have connected with or seen in various online groups, including former #IBDHour guest host Shell Lawes, the IBD & Ostomy Support Show girls (well three of them) James from The Toilet, Me & IBD and many others. It was nice to meet people in person rather than just online, and to be bale to have casual conversations about ostomy bag accessories!

You can find out more about the charity in this little video…

A couple of people asked me why I wasn’t staying for the evening ball, and I thought about it on the way home. It was partly about childcare, but mostly because when it was time to buy tickets and book rooms we just didn’t know what would be happening with my wound (18 months and counting). As it happens, it would have been possible wound wise, but it has prevented me doing so much – not because I am in pain, or in bed but because I might need professional intervention to do the dressing change. When things like that drag on and on (and on) you don’t realise how much it is holding you back – so that is the focus, get that wound healed (seeing consultant on Friday) – and then do the good stuff.

And maybe then next year I can share my story, and some poems at the Purple Wings Charity Ball…

 

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.

Guest on The IBD & Ostomy Support Show

IBD Show Logo

The IBD & Ostomy Support Show has been going for about 7 weeks now – I wrote a quick review of the first episode. I am going to be a guest on the next episode this Thursday 11th May at 8pm – you can watch on YouTube.

I’ll be talking about IBDHourΒ and my IBD journey, and the show has two themes – immunosuppressant and then an ‘Ask Anything’ section – you can ask questions in advance via the Facebook page and take part in the survey here.

I’m really looking forward to taking part, and hope you can check it out!

An open letter to my friends & family

 Hi everyone,

So as you know I had big surgery in January 2016. The wound hasn’t healed, and next week I’m going to see a plastic surgeon about it.

I’ve had over 200 dressings applied, which started in May. Most of the time that has been 7 days a week. It has been very disruptive to my life, to our lives as a family. Catching up with missed work. Being tired from growing a new buttock. 2 further hospital admissions.

And that has meant plans have been cancelled. Sometimes rearranged. Or not made at all. And as it has gone on longer and longer, fewer and fewer plans got made. 

And I’ve tried to be upbeat – no, it doesn’t hurt, yes it’s still going on, ha ha, growing a new bum cheek – but it’s getting harder. Hopefully next week will give me a time frame for getting it sorted.

And so this is an apology for plans cancelled or not made at all, birthday cards that came late, phone calls not made.

And I’m not ready to promise, but there is a hope that it will all be over soon. Then plans can be made, games played, meats BBQd and drinks drunk.

So, please bear with me, it has been a bit limbo-Esque, and there is much I want to do once I no longer have a hole in my bottom.

 

 

 

What to write?

Sometimes I really struggle with what to write about in my blog. As the main focus is about my inflammatory bowel disease and subsequent surgeries, sometimes there are periods when not much is happening, which don’t make for great reading.

Right now for instance, I am still having the wound from my surgery 12 months ago packed daily. I am waiting to see a plastic surgeon to see if anything can be done about that wound. And there is an infection in it so I am taking antibitoics. Other than that, health wise I am OK (I have a bit of a cold but it’s not too bad – I had my flu jab).

My blog has always ben about my journey, so when nothing is happening, it makes the updates harder to do. As such, I don’t have a huge following, and most of my readers are friends who read it via facebook. Of course, if I don’t post regular updates, then I won’t get more readers… so it is a problem.

The other issue is that I am pretty busy. I work full time, and by the time I have come home and got either dinner ready or the toddler to bed, I’m not at my most creative. I have a few ideas, but never seem to have the energy to develop them. It’s hard to know if this lack of energy is IBD related – fatigue is a huge issue – or if it is my body trying to grow a new buttock, or if it is just life in general.

However, it is helpful to me. So I shall continue to try. I’d like to get into video posts (vlogs) but need to get myself an iPhone adaptor for my tripod. And maybe some lights…

What I have discovered recently is there are some great IBD blogs out there, from a range of people at a range of stages in there journey. I’ll put a list together. Maybe reading more of them will help me find my voice…

 

My IBD Story Part 2 – #IBDAwarenessWeek

This is part two of my IBD Story. In part one, I ended up in hospital, and left with a stoma…

It took a little while to get back to any kind of normal. I was self-employed at the time, and had to claim income support as I was unable to work. I still don’t understand how anyone could falsely claim benefits, it was a pretty mammoth task to make a claim.

Having been discharged in September, I managed to get myself a new job in December leaving my temping and other bits and bobs to become an arts youth worker. I returned to fencing training, gained weight and was pretty healthy. I managed the bag OK – a few leaks but nothing major.

I had a number of meetings with a colorectal surgeon to discuss the possibility of an ileo-anal pouch, a kind of reversal which would rework my internal plumbing, eventually removing the stoma and letting me poo sitting on the toilet again. You can read more about pouches here. And so in August 2006 I was admitted for the pouch formation surgery. Another big slice down the middle. Recovery was OK, although the new stoma – a loop ileostomy – was very flush to the skin and much more difficult to manage. I returned to work in November, but only managed a day – I was plagued with pain in my bottom. I needed stronger and stronger pain killers. Examinations were inconclusive. I sometimes had to get up in the middle of the night to have a bath.

On the 2nd January 2007 I woke up in the middle of the night to go to the toilet. I couldn’t get myself out of bed, my legs just didn’t seem to want to move. I assumed I was just really tired and went back to sleep. That morning, I could still not move my legs – my knees had swollen up. After much wrangling a GP visited me at home and prescribed (eventually) an anti-inflammatory. I saw my consultant again, and he sent me for a second opinion.

Enter The Professor

I went to see Professor Nicholls, who had worked alongside Alan Parkes to develop the pouch technique. At this time I was a private patient, and the consultation at The London Clinic was like entering a different world. I was booked in for an EUA – an Examination Under Anaesthetic. This revealed that the rectal cuff had completely denuded of lining. When my colon was removed, a rectal stump was left (which would allow the internal pouch to be connected). It was this tissue that was affected. The solution would be to remove as much of that tissue as possible, and then hand stitch the pouch just above the anus – this was how the operation was originally done, before the advent of the surgical stapler which leaves more of the rectum intact, but reduces time under anaesthetic. I was booked in for surgery in February.

Another laperotomy. Still a difficult stoma to manage. More MRSA. However, the pain was much reduced. Eventually, I returned to work, having just a short break in June to have my stoma closed and my pouch activated. Following that minor procedure, whilst walking around the hospital to try and get my guts going again, I produced a 10 second fart. It was a proud moment.

So, it had been a tough couple of years. However, I had my pouch, so things should get better, right?