About doobarz

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

Stag with a Stoma

I recently went on a stag do. For me it involved lots of drinking and some dancing and then some more drinking, a really long sleep and then more drinking…

This was the fourth stag do I’ve been on since my IBD diagnosis and surgeries – two with Stoma’s, two with an internal pouch. It could be a daunting prospect, so here are some things to think about before you get so drunk you end up asleep in a night club.

Do people know?

Depending on whose stag do it is, not everyone might know about your IBD/ stoma. There is bound to be someone you’ve never met. How open you are is a big part of your life, and it could be that just the stag and organiser know, or maybe no one at all. Remember though that when it’s well managed a stoma shouldn’t be a barrier to most activities, but do consider letting people know about it if it is going to restrict you in some way.

Travel

Travelling can be stressful, particularly if public transport or airports come into play. Make sure you have an easily accessible spare appliance and accessories to change, and a RADAR key to give you access to disabled toilets. You’d be surprised that big chain pubs like Wetherspoons and even some nightclubs have RADAR key access toilets which can be a comfort.

Activities

Activities can be a big part of stag dos. I’ve paintballed and go-karted with mine (wearing a shield for the paint balling). Depending on how recent your surgery was you might want to wear some support wear – a belt, vest or underwear. These are available on prescription from companies including Vanilla Blush and Comfizz. Speak to your stoma nurse for more details.

Drinking

One issue I have with my stoma is drinking large volumes leads to liquid output – so pints are not a good option for me all night long. Thankfully gin and tonic seems to cause fewer problems. If you know that large volumes causes issues, then switch to short drinks. You might also benefit from a sachet that traps liquid output and turns it to a gel – like Trio Pearls for example. I took some with me on my recent stag do – although didn’t need them in the end.

I also carried extra loperamide, but you should check with your doctor before using it if you don’t usually do so.

Bag for supplies

I have a little Timberland man bag that I use to carry my spare appliance, RADAR key and a few other bits. I managed to carry this around no problem in Cardiff, although did have to put it int he cloakrom in one club we visited. At this point I stuck my spare bag in my back pocket, just in case.

Food

Sometimes in the rush of the pub crawl, eating gets forgotten or at least delayed. If you are drinking lots then someone else is bound to be hungry, so grab a bag of crisps at the bar or divert to a shop to grab something, particularly if you know you need to eat regularly to maintain your consistency.

Sharing rooms

Hotels are often shared on a stag do. If you end up sharing with someone you don’t know, or haven’t seen for years, then do consider if your output might be any smellier than normal (curry and a pint?). If you don’t already use a deodorant for your bag, get a sample for the weekend – I use Na’Scent, but other solutions, including mint Tic Tacs- are available.

So, there you go – my tips on surving a stag do with a stoma.

#IBDHour September 2017

On our first birthday Jenna Farmer is posing the questions as follow:

Q1 Please introduce yourself (you can share your diagnosis if you wish) and tell us how your summer was!

Q2 There are so many different diets out there, do you follow a strict diet and does it make a difference to your symptoms?

Q3 What are your ‘trigger foods’ that make your IBD worse?

Q4 On the end of the spectrum, what’s your go to food in a flare?

Q5 Do you think there is enough support with discussing diet and IBD-such as access to dieticians?

Q6 What’s your biggest worry about the diet you are on? E.g missing out on a certain food group or nutrient?

Q7 Low residue and low Fodmap diets are becoming popular-but have drawbacks. What are your experiences with them?

The Other Side

Interesting to think about the other side

GP and Human

You see ‘a GP;’ a role who is there at your service to sort out your healthcare needs.

WHO is on the other side? Do you know? Can you see?

*****

What do you see? You had to wait to be seen. This annoyed you. What on earth is the GP doing? You grumble as you go in to be seen.

What is the other side? Patients keep arriving every 10 minutes over and over all day long. Your GP is trying to keep to time but people keep coming in with lists, complex issues and mental health problems which can’t be done in the allocated time. The GP knows you don’t like having to wait. She feels guilty about this and stressed by it. She apologises even though it’s not her fault. The GP is adding ‘catch-up’ slots in to try and prevent patients having to sit in the…

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The Next Step, Wound-wise…

Monday wasn’t the best day I’ve ever had. Having driven into work after dropping off the boy at nursery and him not wanting to go in, I discovered that my meeting had to be cancelled. It was no-ones fault, but it really threw me out as I suddenly gained time that I didn’t have everything with me I needed to fill productively.

I was also annoyed because I’d driven for an hour to get to work, and would have to leave early for my dressing appointment – so lost time in my day that I could have spent working from home. I took out my anger on an early lunch at KFC.

Let’s give this a bit more context. I’m currently having my now 19 month unhealed chronic wound where my rectum and anus were removed treated with a PICO dressing – a vacuum dressing with a small portable battery-powered pump that I’d previously last year – I blogged about it here. Because of that, I’d had to cancel my involvement in the bubble football activity on a stag do I’ve just been on. As it turned out, the dressing had become overwhelmed anyway, having been changed on the Wednesday (there are only two dressings in a pack so it can only be changed once a week, whilst the pump lasts 7 days). So it’s still wetter than we thought it would be. This is still having multiple dressing changes each week, and at this point is starting to get me down. The disruption is the thing, plus the fact it has been going on for quite so long – well chronicled on this blog!

What that looks like for me is a struggle with motivation – so less blogging for example, no poetry writing. I eat badly – not main meals but snacks. I drink more (not excessively, but more than I probably should) and fritter money away, or buy things I don’t really need.

My focus is reduced at work too, so I feel less satisfied with my job, and probably could be doing more. The ongoing saga has meant I have not been able to exercise as much as I would like, and coupled with the extra eating that has led to weight gain – some was fine, but I am now the heaviest I have ever been at over 14 stone, and so am now clinically overweight, and that starts to have an impact too – because I have always been pretty skinny. But can’t exercise to lose some – pass the ice cream!

I had decided today after that heavy stag weekend that I would speak to my GP and try and get some kind of deadline for progress with the wound. I haven’t managed to get an appointment yet, however the Community Tissue Viability Nurse is pulling out the big guns and I’ll be getting a larger vac pump next week – so that at least should move things forward.

I’m still going to talk to the GP though. I recognise in myself that things are not right, and whilst I don’t believe I am depressed, it feels like I am in a period of low mood, which I have had a couple of times before. We are just coming out of a reorganisation at work, and I think I attributed much of my feeling to that, but now it is over the feelings are still there…

So, there you go. A wound update, a mental health disclosure and an insight into how I deal with anger. I should note that I was not the only person in KFC at 11.30am…

I shall try and update more often, in the meantime, why not treat yourself to a badge via my FB page store?

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 line  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…

 

#IBDHour July 2017 – Support Groups

Here are the questions for tonight’s #IBDHour – follow on Twitter @IBDHour

Q1 Please introduce yourself (you can share your diagnosis if you wish) and say how you are today

Q2 Do you access any online groups for support – and what support do they offer?

Q3 Have you attended a real life group or event organised by an IBD organisation? If not, why not?

Q4 Is there a need for real life support groups? What would they look like?

Q5 @CrohnsColitisUK are clear they have local groups to raise awareness and fundraise, would you like them to offer more?

Q6 So much of life is online now – what is the benefit of real life contact?

Q7 What role should hospitals have in offering support? Should it just be to individuals or groups?