World IBD Day 2019

On 19th May it is World Inflammatory Bowel Disease Day. If you check out the hashtag #WorldIBD or #WorldIBDDay you’ll find all kind of things on social media, from personal stories to facts and figures, opportiunities to donate to related causes to fund research or support.

On Saturday 18th May, I took part in the Crohn’s & Colitis UK Walk IT event in Bristol, walking 5 kilometres with my father, wife and two sons age 4 & 10 months (to be fair, Eli was pushed around).

The hArris family at the end of the Walk IT event with medals
At the end of Bristol Walk IT

We’ve done this before two years ago, and this year I was slow off the mark to do any fundraising – although you can donate to CCUK via my JustGiving page. I was diagnosed with Ulcerative Colitis in 2005, and had emergency surgery 3 months later to remove my colon. I had no idea when I was diagnosed how serious the condition was. I then tried an internal pouch, which eventually failed and was defunctioned in 2015, then removed in 2016, along with my rectum and anus. That wound took two years to heal, and along the way I have also had episodes of arthritis and low mood, some nasty side effects from drug treatment, leakage, pain, bleeding, infections and MRSA (twice).

I have tried to be strong along the way. Sometimes it was easy because I was so drugged up I just didn’t care. Sometimes I thought I was being string but was really just being self-centred. I remember one afternoon when I was in hospital, for another complication after our first son was born just weeping – I think because timings hadn’t worked out and I wasn’t going to get to see him that day. It’s a horrible condition, with no cure, but because of the changing nature of it (both Ulcerative Colits and Crohn’s Disease flare up and can go into remisison) it is unpredictable. Everyone’s journey is different.

So if you are interested, have a look at some stories. If you can, please donate some money to a related cause.

I’ll leave you with this Instagram post my wife created after we finished our walk.

Happy World IBD day!

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.

The Future of #IBDHour

I have been giving some thought to the future of #IBDHour which started way back in September 2016. It has got less regular, particularly since the arrival of baby Harris number 2.

When I started it it was the first UK based IBD Twitter chat, using the Twitter Hour format. We’ve had some great guest hosts and a range of topics.

I have tried to recruit a few volunteers to support it, but haven’t been able to secure regular support which is fine, and one of the hazards of chronic illness based activities.

I’m not able to sustain in it’s current format and regularity, so for now it is resting.

There are now a number of other Twitter based chats, including those hosted by The Bottom Line and Pelican Healthcare.

What I’d really like to do is a podcast, but that will need to wait until the baby is a bit bigger (and I learn how to podcast…)

Thanks for all the support over the life of #IBDHour – and keep an eye out for occasional specials!

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.

 

August and Everything After

Well hello blog readers! It’s been a while since my last post so apologies for that, but as you may have seen from my social media in July we welcomed a new little boy into our lives, making us a family of four.

Getting prepped for a new baby is pretty time-consuming, and actually having one even more so – hence the lack of blog posts. We seem to be a in a bit more of a routine 5 weeks in, and the visiting family have slowed down, so here I am!

So what have you missed out on?

Bottom

In June I had a follow-up appointment with my colorectal surgeon at Bristol Royal Infirmary reviewing the progress of my wound. I last posted about it in February, and was indeed discharged from tissue viability. The wound has healed, although a small tract linked to the network of former fistulas and a small collection remains, and discharges sometimes – seems to be worse in the heat so the hot weeks of summer were a reminder it was still there. I haven’t gone back to Cardiff, and will see Bristol again at some point – but all the signs are it is healing – so hurrah!

Birthday

It was my birthday in July. I am now 37. Both children were also born in July. It will be a busy month.

Purple Wings

Last weekend, I attended the Purple Wings Charity Conference and Ball. I went to the conference of this small charity last year (I wrote about it here) and the road works still seem to be happening. In January I did the 2019 calender shoot, and the calender was launched at the conference. You can order one (soon) from the Purple Wings Charity website.

Topless photo of Richard, showing his ileostomy bag

Mr July – Purple Wings 2019 Photo Credit Lisa Jones for Purple Wings Charity

I also performed some poetry and shared some of my story and got some great feedback – including ‘You should have a YouTube channel for your poetry’ and ‘I didn’t relaise you were funny’, and the lovely ‘I’m glad my mum had already left’.

The Hidden Fear

IMG_2736

The Harris Family at Bristol Children’s Hospital Emergency Department

A few weeks ago, when checking on my son before we went to bed we discovered he had had an accident and pooped in his PJs. It hadn’t woken him, and he seemed otherwise OK when we woke him up to change him. A little while later he woke again and came into bed with us, and I was kicked out into his bed. He had a high temperature, we gave him some Calpol. He didn’t really settle, and so was downstairs early, sat on the sofa and watching TV and snuggling mummy, temperature still a little high.

In the early hours the diarrhea started, and he was just a poorly little boy. he didn’t complain, but was very quiet as we tried to get him to sip water. He even managed a little breakfast.

About mid-morning, when we wiped there was blood. Not a huge amount, but blood. So it was 111, out of hours GP followed by a trip to Bristol Children’s Hospital – by which time the second lots of Calpol and the Nurofen had kicked in and the fever reduced. He was still often having to go to the toilet – which made the journey home interesting when we had to pull over in road works (thankfully there was a pub). The diagnosis – a stomach bug, albeit a nasty one.

Small children have a wonderful way of causing embaressment don’t they? Like suddenly being well when the paediatric A&E doctor is able to see them? Still, the doctor did get a cuddle when it was all over…

As a parent, these kind of episodes, whilst rare, can be prety scary. Between mummy and daddy you have to not panic, make the right phone calls, and then prepare for a possible trip for several hours – snacks, drinks, changes of clothes, towels for the car, books and toys to entertain. And I’m usually the non-panicker. This time however I had an added feeling of dread – because my first UC symptom was blood on the paper. What if I had passed this disease on to my little boy? What if he had to have a colonoscopy? Or a stoma?

I know that there is a slightly higher chance that my son will have UC – but only slightly. Neither of my parents or grandparents had it. For those few hours though there was a real fear in me, and I think for some days afterwards.

However, he recovered just fine, and no further symptoms. I think the fear will always be there, but the treatments now compared to when I was diagnosed are so much better if he doe shave it – which he probably doesn’t.