Category Archives: ibd

Crohn’s & Colitis Awareness Week 2020

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All of a sudden awareness week is upon me again. 2020 has been a unique year, and I haven’t done much to raise awareness of Inflammatory Bowel Disease (IBD) – I’ve been just getting on with life in lockdown, and then with children isolating as bubbles burst.

However, it is an important week, so I’m going to make a bit of effort!

Here in the UK, Crohn’s & Colitis UK have set up a challange or event each day this week. You can read about all 7 of them here. I’ll be doing the #4FactsChallenge tomorrow, and will wear some purple on Friday. If you want to get an insight into a day in the life of someone with IBD, then I do recommend the In My Shoes App which will let you follow along for a day.

I know a number of advocates have been struggling with there place in the IBD awareness world recently, as the emphasis seems to shift to an influence rmodel. It’s really positve to see people with hidden conditions and stoma bags featuring in advertising and marketing, and building podcasts and businesses. I’m not sure I see myself as an adsvocat enaymore – mostly because I don’t seem to find the time to dedicate to it, but I still occassioanlly drop into the forums and offer advice if I can.

I think what I would want people to be aware of this year is that some people with IBD will be really unwell. They will need frequent trips to hospital, be debilitated by their condition, or by a combination of several conditions making treatment difficult.

Another group might not yet have found the right treatment, or have drug therapies failing, so having been well will now be unwell again.

Another group, particualrly for those with Ulcerative Colitis, will have had surgery (perhaps several times) and will be currently well – like me.

And a further group will have found the right treatment for them, and will be well. Working, enjoying life and exercise with minimal impact from their disease.

All of those people have IBD. It isn’t a competition about who is most unwell, who has had the most surgeries or different treatments, or who posts most on social media. We are all of us united by a disease that we still have lots to learn about, so as you read through the various posts this week, remember that everyone’s journey is unique. If your recently diagnosed, don’t feel that surgery or a life unable to leave home and be away from the toilet is inevitable – it might not be your path.

Connect and share as you wish – but remember first and foremost to look after yourself – you don’t owe anyone anything in respect of your illness. Right now, the coronavirus restrictions mean everyone is emotionally drained, so try to just breathe and do what you need to do survive, so next year you can thrive.

World IBD Day 2020

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And so once again World IBD is with us once again – so happy 19th May! This years’s theme is Work, which in the current global situation is looking a bit different for many of us. In this post I’m going to share with you some of my work related IBD moments, challenges and successes.

I was diagnosed with Ulcerative Colitis in 2005. At the time I was self-employed as a drama practitioner and did some office temping too. 3 months later I was beign treated with mesalazine suppositories, but things were getting worse, and one Friday I went to the GP who prescirbed prednisilone foam enemas. That Saturday I took a group of young people to Yprk for the day, and remember spending most of my lunch break in the toilet, sleeping most of Sunday and being taken back to the GP by my mum on Monday and sent to hospital. Various drugs were tried but I ended up hacvign an emergency colectomy, with a lenghty recovery period following the laperotomy (mid-line incision) and adapting to my ilesotomy. I wasn’t able to work, and was in recepit of what was the time called incapacity benefit for around 3 months. I still lived with my parents, and once I had recovered I was able to gain my first full time youth work post in Peterborough. Adjusting to a job with unsocial hours and work in schools where toilets had to be located and used at set times made having the bag interesting, but not too much of a hassle. I did an occasionall bag change at work, and don’t remember having any major leaks at work.

In August 2006 I had the first stage of my ileo-anal pouch formation. I had complications, and was unable to return to work until I had had further surgery in February 2007 (I did go back for one day and lasted just a few hours). I was fortunate to be able to recieve some counselling support via the occupational health department, but eventually went back. I continued to have issues with pain and leakage, which were temporarily helped with a course of Infliximab. I completed my MA Youth & Community Work in Durham as a part time student, and was then, in 2010, able to gain a mangement position down in Wiltshire, managing a youth centre in one area and overseeing the running of one in the adjacent town too. Late nights 3 nights a week meant I was pretty useless at the weekends, and the leakage from my pouch, as well as the bad skin from my foam enemas were an ongoign issue. I developed a huge abscess, had some time off with low mood and then decided to change role, and was able to find a much less demanding 9-5 role in 2013. This did knock my confidence and make me question what I would be able to do in the future. I had started Humeria, which helped a little but not enough. In 2015 I started another new management role, and in 2016 had my pouch defunctioned to see if this would resolve the issues I continued to have with frequent abscesses. A year later I needed the pouch excised and had my rectum and anus removed, and had a very long recovery from that surgery (2 years on total for it to heal, although I was able to work for much of that)/ I had a long period of daily dressing changes, and then trips to more specialists to try and get the wound to heal. Since it has been healed I have been, mostly, symptom free.

So reading back over that I have been very fortunate to have a number of supportive managers, and work for organisations that have had good sick pay and occupational health support. When I had a new manager I would use materials from Crohn’s & Colitis UK to explain what my condiion was and what I needed. I didn’t always take time off when I should, and have really struggled. Now however I am in a great place, and whilst I don’t believe I am cured, I am certainly in remission.

I am proud of what I have achieved at work, and those achievements certianly outweigh the harder times. You need to work with your IBD team, be honest with yourself and keep a work life balance – don’t put everythign into work so you spend all weekend recovering!

Reflections on 2019

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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

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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

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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!

The power of connections

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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?

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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

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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

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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!)