About doobarz

You can view my blog at https://gutlessdick.com/ and follow me on Twitter @doobarz

IBD Awareness Week 2019

So I’ve been quiet recently here, and this week in particular. I’ve had flu, and felt really rubbish. I managed to make it back to work on Thursday, and was then off on Friday doing childcare.

Now I don’t know for sure I had flu, but the symptoms were flu like – runny nose, headache, shivers, sweats and then fatigue. In fact it was the post-viral fatigue that was almost worse than the flu bit really. And I had received my flu jab, so either this was a strain that wasn’t covered, or made less because of the jab – or was some other virus.

I think it is worth remembering that people with chronic illness can still get regular ill. This might be compounded by any treatment which affects the immune system, and they may take longer to recover. Because of that it is worth exploring with your HR department if you can record any disability related sick leave separately.

There have been some great posts on blogs and social media for Crohn’s & Colitis Awareness Week this year, and in the US LAX Airport turned there illuminated columns purple! Tweet from LAX

So a real quick overview and a brief summary of my journey…

Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease (IBD). Both are chronic conditions with no known cause or cure, but the symptoms can be treated with a range of medications. Sometimes people require surgery to remove parts of the bowel, and may have a stoma formed with an ileostomy or colostomy depending on where within the bowel it is made.

I was diagnosed with Ulcerative Colitis in May 2005. 3 months later I was on hospital receiving IV drugs to try and prevent my colon from rupturing. They weren’t working, so my colon was removed as an emergency operation. I contracted MRSA and septaciemia whilst in hospital, and had a further operation too. I left hospital with an ileostomy.

A year later I had an internal pouch created, but it was problematic and I had to have further surgery before it could be activated. All was good for a while, but there was inflammation still in the rectal cuff and I had to have more drug treatment.

In 2014 I was told the pouch had failed due to a collection which led to frequent abscesses. I had a bowel diversion in 2015 to see if resting it would help – it wasn’t enough to it was excised and my rectum and anus removed in 2016. It took nearly 2 years to heal the wound at the bottom end.

Now, apart from a little bit of wound discharge occasionally, all is well. My stomach behaves well and I can do all the things I want to do when my two children allow me the time.

I’m not cured. I still get issues in other parts of my body, but they are managed.

#NoColonStillRollin

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’.