About doobarz

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

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!

Reflections on 2019

So we are now into 2020. I saw a Twitter post today reminding me that we are now as close to 2050 as we are away from 1990.

2019 was pretty quiet on the blog – only 4 posts. And it was pretty quiet IBD wise too. The Barbie Butt wound has remained healed, aside from the odd bit of discharge and leakage. My stoma has been well managed, with a few leaks but not many at all. I did get a little bit of arthritic type pain in my hands, but it went away again.

Life with a 5 and a 1 year old whilst working full time, even with a short communte and flexible working is hectic. My job is demanding, and sleep deprivation was a feature at the start of the year. When my wife went back to work in March we then juggled her being at work, also with a commute and now regularly get up at 5.30am to get ready to take the children to the childminder for 7.

I have been able to do some running though, following on from the Sodbury Scramble earlier in the year. And I didn’t quite complete my parkrun challenge, as an injury and some ilness prevented me from doing all 30 runs – however I managed 27 in 7 different locations, and did the New Years Day Double! My running really helps with both my physical and mental health, and I highly recommend parkrun to everyone.

The tiredness and hectic life has meant I have not yet completed my coaching qualification, so that is high on the priority list for 2020.

So nearly 15 years since my diagnosis, and now coming up to 4 years since my last major operation, and therefore 2 since the wound healed. Life is – usual?

How was your 2019? Leave a comment or get in touch via social media

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?