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.

 

The Hidden Fear

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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.

 

Why is #IBDHour about set backs?

The theme of this month’s #IBDHour chat tomorrow is set backs. It’s sometimes tricky to come up with a theme, but this month it came quite easily.

At the end of March, Crohn’s patient Dynamo released a video on Twitter revealing side effects he has had following treatment for a flare. The artritis he is suffering has meant he can’t shuffle cards – which is tricky for a magician!

On a smaller scale, over the Easter weekend I had to take a trip to BrisDoc when a small abscess burst out of my old fistula tract. It wasn’t too painful, but it needed antibiotics, which caused bag leaks. And I had to start wearing pads again to catch the leaky stuff. And for a few days I was worried that this could be the begininng of more issues, maybe more surgery if the abscess needed draining – it knocked me.

So tomorrow night we’ll be talking about set backs – what do they look like, what can you do, and how do you recover – I hope you can join us!

* Note – due to illness this IBDHour was rescheduled for May

What Happened in Wales Part 3 and some grumbles

Hi everyone. I’ve been a bit quiet on the blog so far in 2018. I think it has something to do with being very busy at work, stepping up at home as my wife’s pregnancy means she is knackered and also the low mood persisting. It has got better from October when it was really quite bad, but I am now 5 weeks of 6 through my group and don’t really feel like much has changed.

Anyway, I owe you an update since my last trip to Wales when I was waiting for an MRI scan in Bristol. It got to December and I hadn’t heard anything so I checked with my consultant’s secretary who said it had been requested. However, radiology use a different system so she couldn’t see where I was in the queue. So I phoned radiology who said they hadn’t had the request. Cue call back the secretary, then on leave for Christmas, so an email to the consultant asking him to re-request, which he did on his return to work and an appointment quickly arrived – the day before my Cardiff appointment! So a phone call to them, explain the situation and rearranged for today – should be plenty of time for the report to be done and shared. I checked at the beginning of this week and Cardiff hadn’t got it, so cue more phone calls, the exchanging of fax numbers and the report was there for my appointment today.

Now, I want to be very clear that I do not blame anyone for this, but I do think it is representative of a creaking system. Our NHS is being deprived of resource, and it is only by advocating for myself that I was able to avoid a January trip to Cardiff that would have really been a waste – for me and them, and then another today. All the staff I spoke to were extremely helpful and understanding – but there are either not enough of them, too many patients or poor systems. Maybe it is a combination of all three, but in a system that seems to increasingly need patients to advocate for themselves, I worry about those who cannot – for whatever reason. Perhaps that is a theme I’ll develop in a future post…

Just after Christmas we stopped using the SNAP dressing because the wound was too shallow to get the foam in – all of a sudden we had improvement! This has continued, and a slight fungal infection aside, the external picture is looking really good.

The MRI scan shows that internally the fistula tracts and void where pouch, rectum and anus were removed are also reducing in size, so it all seems positive, and I’ve got an appointment to go back to Cardiff in 6 months if needed. And yet somehow I don’t feel… happy? Joyful? That it is all over?

I see the tissue viability nurse on Friday, so perhaps if I can be discharged from that service I’ll feel better. Maybe I’ve been institutionalised by it all going on so long?

Meet Jack – blogger @ LifeAndIBD

Jack is a new blogger on the IBD scene over at LifeAndIBD. Via a Facebook group he was looking for some collaborators, so we decided to interview each other! He is much more organised than me, so you can see his interview with me here, and find his answers below.

Q1) Tell me about yourself. What’s your name, where do you come from and what do you do for a living?

I’m Jack, I live in Bournemouth and I am a claims assessor for a private medical insurance company.

Q2) What were you diagnosed with and when?

I was diagnosed with Crohn’s disease in January 2016.

Q3) How long had you been suffering before you got your diagnosis?

I had symptoms for around 10 years prior to getting my IBD diagnosis. It was hell!  I had real bad abdo pain. Diagnosed with appendicitis and had it removed. The pain carried on after the procedure and i kept returning to my GP telling them this. They said i had phantom pains, it was ibs, change my diet, and then they told me i was imagining it for attention. I changed my GP who then sent me for a colonoscopy in 2016 and they then saw I had severe Crohn’s.

Q4) How did you feel when you were diagnosed? Had you heard of Crohn’s/UC before?

In all honesty, I was completely devestated! I was in pure shock for about 3 days. Going home from seeing my consultant is a blur. If it wasnt for my husband being with me, I dont know where I would have ended up. I had heard of it previously, someone i knew of had been newly diagnosed but didnt really open up about it. It was only then when she was diagnosed, I realised we had had similar symptoms and decided I would push to get myself seen to.

Q5) What treatments have you been on, and are you on any at the moment?

I started off on Azathioprine. I was on that for around a month and then I went down with pancreatitis. They promptly stopped that and put me on 6 weekly infusions of Infliximab which I am still on now. My last infusion I didn’t react too well to and I went back into hospital with pancreatitis again. Not sure what they are planning on doing next with my treatment.

Q6) Is there anything you want to do but can’t due to your condition?

I can’t go anywhere without knowing if there are toilets readily available. I cant go running, my joints hurt too much and the fatigue is so extreme, some days I can barely get dressed.

Q7) How would you feel if you needed to have a stoma in the future?

Right now, I honestly wouldnt mind. I don’t feel my treatment has worked for the 14 months I have been on it and my symptoms seem to be worse. If having a stoma means putting me into remission, then I am all for it!

 

Q8) Do you believe we will have a cure?

Unfortunately no I don’t. I can’t tell you why I think that, and it would never stop me raising awareness and money for Crohn’s & Colitis UK. The only thing I can see happening is more effective treatment, but this may just be me being cynical.

Q9) What is one piece of advice you’d give to someone who is newly diagnosed?

Never let it beat you.

 

Q10) Do you get involved in any support groups?

I dont. I dont even know if there are any in Bournemouth. Its something i would like to do in the future though!

Q11) What is one thing you would like the world to know about IBD?

It’s invisible. I may look OK, but chances are I’m not. Don’t be ignorant.

 

Do check out Jack’s blog, and comment below if you like the interview and if you’d like to see any more collaborations (or collaborate on a post!)

 

#IBDHour January 2018

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Our chat this month is all about biologic treatment – here are the questions written Young Crohns our guest host this month.

Q1 Let’s start with some introductions! Please say hi – name, age, where you are and share your diagnosis if you wish. How has your day been? #IBDHour

Q2 What is your current treatment plan for your IBD? Does it involve medication? #IBDHour

Q3 Have you heard of biologics used for treating IBD? Have you ever tried any of them? #IBDHour

Q4 Have you had success with biologics? If not, what was the reasoning? #IBDHour

Q5 How do you feel about the risks these drugs bring with them? Do you think these medications are worthy of the risks? #IBDHour

Q6 If you’ve had side effects of these medications, have you received help with them from your IBD team? #IBDHour

Q7 Have you received more than one biologic? If so, how did that manifest itself and how did you feel? #IBDHour

Q8 Have you received other medications alongside a biologic? If so, what was it? How effective was it? #IBDHour

Q9 Finally; how do you find your treatment on biologics? Overall positive or some aspects of negative? If so, what is negative about it? #IBDHour

#IBDHour December 2017 – Review of the Year

The final #IBDHour of 2017 will be a review of  and we’ll be starting over on Twitter at 8pm on Thursday 21st December. Follow @IBDHour – here are the topics for discussion.

Q1 Let’s start with some introductions! Please say hi – name and where you are (even if your just following along) and share your diagnosis if you wish. And overall has 2017 been a good #IBD year for you? #IBDHour

Q2 What has been your personal highlight this year? #IBDHour

Q3 What has been your biggest IBD related challenge this year? #IBDhour

Q4 What has been the best IBD related campaign in 2017? #IBDHour

Q5 Most exciting treatment or research development for IBD? #IBDHour

Q6 Best blog post or social media campaign in 2017? #IBDHour

Q7 Most inspiring IBD-er of 2017? #IBDHour

Q8 Your hope for IBD in 2018? #IBDHour