Plans for 2020

I was very pleased to have got a blog post on, even if it was short, in January already. It’s been a very busy week this week, with work (just one of those weeks) life and volunteering. The children have been waking up very early too!

Last weekend I was volunteering at a residental for the church youth group which was amazing – not done one for a while, and it was nice to flex the old youth worker muscles. I’ve been volunteering with the church youth group for about 18 months having stopped full time youth work in 2013 after I had my first huge abscess and the late nights were not working well for me with the pouch complications. Today I was supporting recruitment of a youth minister which was a very interesting process, and the young people had some great insights to offer.

It’s also been a funny week ostomy wise. I had to change my bag each day from Monday – Wednesday (usually I change every 3/4 days) and eventually worked out that one of the dips by my stoma had reduced, so no longer needed paste. Because I’ve been doing more running I’ve lost some weight/ improved my body tone. A little change can make a big difference! I shall do a future post about my current Ostomy appliance and accessories soon.

Coaching

I am determined to get my coaching qualification finished off, and have dedicated Monday evenings, as well as a week in February to this. I started work with a new coaches this week, and it reminded me how much of a difference it can make to the coachee, but also how great it feels to have a good session with someone.

Running

I have entered the Old Sodbury Scramble again this year, which takes place in March, and then got a place for the Westonbirt 10k in May too. I’m really enjoying running, and hoping to make it to 50 parkrun’s this year too. You can follow my running activity on Strava if you are so inclined.

I’m going to set up a JustGiving page for my running activities this year and raise some money for Crohn’s and Colitis UK.

#IBDHour

IBDHour hasn’t happened for a while now, and maybe post coaching qualification it could make a reappearance… Or be reborn as a podcast! I’m a fan of podcasts, and have a few ideas for theme and content / but no idea how to get it going!

Friends

One regret from 2019 is not being in touch with my friends as much as I would like, so this is something that needs to change this year. No excuses, just one of the things that you never seem to get around to with young children, which also makes travelling that bit more difficult.

What are your plans for 2020? Leave a comment!

Some thoughts on the year so far

I’m old enough to remember a time when a new year began, you’d write the new year date in a few cheques in your cheque book to make sure you didn’t get the date wrong, and give someone a cheque they couldn’t cash. I can’t now remember the last time I wrote a cheque, although I still recieve the odd one at birthdays and Christmas. I’ve never been one for new years resolutions, but I did want to try a few things this year.

A paper calender at the month of January

Photo by Maddi Bazzocco on Unsplash

I wanted to lose some weight/ get fitter, so was aiming to run twice a week, raising to three times. To support this, I entered the Old Sodbury Scramble, which took place in March. This would be my first non parkrun 5k, and it was certainly different. A very slippery course over what was effectively farm land, with some steep climbs. However, I managed to get around, and even enjoyed it from time to time – and didn’t fall in the mud. I am enjoying the running, and also trying to do one lunchtime run at work – which makes sure I take a break as well as getting some exercise. You can follow my running adventures on Strava if you’re interested. My wife also set me a chalenge of doing 30 parkruns in 4 locations – I’m a bit behind so need to keep it up, but my time has been coming down nicely.

Race nu,mber and medal from the Old Sodbury Scramble 2019
Not shown – the sweat and mud

The second thing I wanted to attempt was a Bullet Journal. Apart from tracking my parkruns and the books I’ve read, I have to say I haven’t really got into it – but a bit more on that in a while.

Third was finishing my ILM Coaching qualification. Since the arrival of baby number 2 in July, this had taken a back seat – mostly because of tiredness/ holding the baby. However, it is something I really enjoy doing, so I’m determined to finish it.

Stoma and IBD are all under control – I’ll be doing the Bristol WalkIT event in May for Crohn’s & Colitis UK with the family.

How do I feel?

Once again it has been too long, so thanks for bearing with me. In case you missed it we had our second child in July, and after two weeks of paternity leave it was back to work. My wife is breast feeding, so I’m still mostly able to sleep, although the broken sleep is probably more tiring than a lack of sleep.

Eldest started school in September and has been pretty whacked, so early to bed but still early to rise. So over the last 3 months both my wife and I have got more and more tired. Then you might get a night when the baby is unsettled, and the toddler wakes up a few times too.

I’ve been trying to eat healthily, but can’t survive without energy drinks – although I am now on sugar free ones.

That of course is par for the course for any new parent unless they are blessed with a child who sleeps through. However, with IBD and a Stoma fatigue can be an ongoing issue, as well as dehydration which also leads to tiredness. And that can take many forms.

There is physical, not wanting to get up in the morning tiredness. Or can only manage to sit on the sofa and watch TV or read a book I’ve read before tiredness. The no energy to exercise tiredness – even though I know if might help.

Brain fog, and a lack of being able to prioritise tasks – book a haircut. And as for creative things like blogging and poetry – forget it.

So what’s the solution? I could get up, go to work, come home, and then go to bed shortly after the toddler – but I don’t think my marriage would last long if I didn’t do some of the baby childcare too. Work is non- negotiable, though I have cut down on my evening and weekend work. I could stop the energy drinks, as I know there is a drop off – but not sure I can get by without them yet, or try and do some exercise.

I think it is all probably just parenting fatigue, but it is very draining. My wound has stayed healed, and the occasional discharge I had is less frequent. I don’t have any other IBD symptoms.

I’ve probably not been the best friend recently, so apologies to those I’ve not caught up with. Sometimes I struggle to recognise when I’m just tired and what might be low mood creeping back in.

I’m currently being used as a bed by a baby who won’t sleep in his bed. I shall try him again in a while, as he is now snoring away.

Tomorrow I have a day off and so will be doing some half term activities with a 4 year old, and hopefully some as a family.

So how do I feel? Exhausted.

For anyone else who has been there, how do you tell the difference between IBD fatigue and just being tired?

The power of connections

I am trying to increase my blog output and write a new post every week, aiming to publish on a Sunday evening/ Monday morning. I had a great response to my last post, so thank you to everyone who commented, liked and shared. Good news is that the Purple Wings Calendars are now available from here.

I was going to write in more detail about the Purple Wings Conference and Ball, and I do want to record the Purple Wings poem I wrote, however Rachel Jury AKA Rocking Two Stomas has done a great summary of the event on her blog – so I thought I wouldn’t try to recreate something that has already been done. Rachel gave a great speech at the conference, and it was lovely to see how much her confidence had grown from last year when she was part of the team speaking about the IBD & Ostomy Support Show.

What I did think about coming away from the event is how great and empowering it is to be in a room with so many other people with stomas and IBD. I’ve been asked a few times what would I suggest to someone newly diagnosed, and never really had a clear piece of practical advice – I always told people to ;remember that everyone’s disease is different’. Now I do have practical advice – connect with other people.

This could be done in a variety of ways.

1. Online

There are loads of Facebook groups, blogs and social media accounts of people with IBD and ostomies. There is also a whole raft of similar for chronic illness generally. Because there are so many, there are many different styles and types of content – some groups are very chatty, others are more focused on advice and support. I used to be a bit scathing of the chatty ones until I was in hospital over a hundred miles from home and couldn’t sleep.

Some of the groups are very busy, and posts can be missed, so do persevere. I am a member of many, but not that active at the moment.

You also need to be wary of anyone offering cures or advice that goes beyond ‘this helped me’ – and always consuklt with your medical team, or an emergency medical professional, before stopping nay treatment you are recieving.

I have made some really good connections and friendships that started online.

2. Support Groups

In the UK, the major (and some independent) charities and organisations run support groups. These might be organised via your hospital. They offer an opportunity to come together and meet other people with the same condition and talk to them, or hear from an expert in the field.

Crohn’s & Colitis UK, the ia (ileostomy association) and Colostomy UK all have local networks or groups operating around the country.

I previously coordinated my local Crohn’s & Colitis UK network, and it was great to be able to have discussions with other patients. Some meet in pubs, some in coffee shops, some at hospitals – it will vary depending on the local volunteers, but it is rewarding stuff.

3. Big events

Periodically, a big event, such as a conference or ball will come along. Things like the Crohn’s & Colitis UK AGM, The Purple Wings Ball or the GetYourBellyOut ball. Because these events tend to be longer in duration, you get more of a chance to speak to more people, and hear some inspiring stories of how people deal with there disease or bag.

4. Make a friend

I have some people who I would class as friends who have IBD and/ or a stoma. I work with one of them, which is helpful if you just need a bit of undertsanding, or at least informed sympathy. If you can, it is worth doing – lots of people are happ to talk and share. Remember though they too are chronically ill, so they might not be able to support you all the time.

 

Question for the Crohns Colitis UK #IBDHour Takeover

Q1 Please introduce yourself – what’s your name and where do you come from? Share your dx if you like, or your relationship with IBD.

Q2 Where do you find community and support for your journey with #IBD?

Q3 If you could tell everyone one thing about #IBD, what would it be?

Q4 What’s the most useful piece of advice or information you’ve received since #IBD diagnosis?

Q5 Have you ever taken part in a research study?

Q6 We’ve got a lot to do in the years ahead. What do you think our number 1 priority should be?

 

 

You can leave your hat on…

You might remember that in the summer I went to an event organised by Purple Wings Charity who give grants to people with stomas from IBD to help regain confidence.

One of there annual fundraising events is the pin-up calendar, and I am going to be taking part for 2019! the shoot is in January and I need to raise at leats £50 to take part – I’m hoping to raise at least £100.

You can read more about the charity here and donate via JustGiving – so go on, get me in my pants!

I’m hoping that this will be a motivation to take control of my diet and lose a bit of weight too, so help me help myself!

What happened in Wales

 

IMG_2002

University Hospital of Wales

So today I crossed the Severn Bridge and went to my appointment at University Hospital Wales with the Wound Healing Service led by Professor Keith Harding. After 22 months with my unhealed perineal wound where my pouch, rectum and anus were removed, I – and the team supporting the wound – were keen to get the expert opinion of the man who literally writes the books about wound healing.

I arrived in plenty of time – I’d taken the day off work and know that hospital parking can be interesting. The setting is lovely, with a nice open space and some sculptures at the entrance to the children’s hospital.

The concourse at the main entrance is like a small shopping centre with a bank and a post office, as well as coffee, book and sandwich shops. What was nice is that there was a mix of high street names and independent units. I worked out where my clinic was, and then headed for the restaurant which has won awards for it’s healthy eating options – so I had a flat bread, baked crisps and water, and it was really nice!

I also found a portrait of this chap…

IMG_2009

Nye

So after lunch I went down to the clinic and was first in which is always nice. I saw a lovely nurse called Hannah who started taking a history – which always takes a little while these days, and it was mostly just the wound treatments!

A registrar came through and then they examined the wound, measuring it and noting the dimensions. They then called through the Professor!

Depending upon your point of view, I’ve either been fortunate or unfortunate to have been treated by three professors – Nicholls, Clark and now Harding. There is something very calming about being in the presence of someone who not only knows what they are doing, but also turn teaches others either directly or by writing books and journal articles – the very top of the field.

So he came in, asked a few questions about how I came to be there (and then asked me to share that with some visitors to the clinic too) and examined the wound. He asked a few more questions, in passing mentioned that ileo-anal pouches do ‘often fail’ (I guess he doesn’t see the people whose are fine) and then gave his prognosis:

  1. An underlying infection. He requested some bloods be taken, and this may show if there is something there. He asked if a biopsy had been taken (it hasn’t) so this might be a future possibility depending on the blood results.
  2. A ‘dumbbell’ shaped cavity, with the coccyx pushing in and not allowing the upper cavity to drain sufficiently – and MRI scan is being requested back in Bristol so they can compare images. Possible solution – shave off some of the coccyx to allow it to drain…

Obviously it is early days, but he also said something to me before he went off to see another patient:

‘We can’t heal everyone we see – we help about 80% of our patients. I won’t promise to heal you, but I do promise that you won’t be forgotten.’

I go back in 4 weeks, so lets hope I can get the MRI before then!