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

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?

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.

Guest on The IBD & Ostomy Support Show

IBD Show Logo

The IBD & Ostomy Support Show has been going for about 7 weeks now – I wrote a quick review of the first episode. I am going to be a guest on the next episode this Thursday 11th May at 8pm – you can watch on YouTube.

I’ll be talking about IBDHour and my IBD journey, and the show has two themes – immunosuppressant and then an ‘Ask Anything’ section – you can ask questions in advance via the Facebook page and take part in the survey here.

I’m really looking forward to taking part, and hope you can check it out!

Look mum I’m on the tele!

Today at work I had to drive to a meeting, and as I was driving my phone started going a bit crazy in my pocket. When I arrived it became apparent I had been featured (well my picture) on ITV daytime show Loose Women who this week launched a campaign about body image using the hashtag #MyBodyMyStory – fellow IBD & Ostomy blogger Shell Lawes (who is hosting #IBDHour this month) spotted this and encouraged those of us in the IBD and ostomy comunity to get invovled, so I sent a tweet last night and then forgot all about it.

So three minutes into todays show, this image graced the nations screens!

IMG_0898

This particular picture is about two years old, and I’ve put on a bit of weight since then, but you can just about see my scar and obviously see my bag.

There are people with IBD and ostomies who would not be comfortable doing this, and there will be people who ‘don’t want to see it’, so by taking part hopefully it normalises ostomy bags – the show has apparently shown at least one ostomy image each day this week. And well done to the Loose Women for allowing so many people to share there bodies and there stories.

You can watch todays show for the next week on the ITV Hub.

Shell has been capturing the images of those people in the IBD & ostomy community and sharing them on her Instagram.

 

The IBD & Ostomy Support Show – a brief review 

So tonight was the first episode of The IBD & Ostomy Support Show which is a new, weekly online show broadcast via YouTube. It has been put together by Louise who blogs at Crohn’s Fighting, Rachel from Rocking2Stomas, Natalie who is The Spoonie Mummy and Stephie who blogs at Colitis to Ostomy – you can also find them on Twitter and Facebook too.

It’s an hour long show with the four ladies taking it in turns to speak ona variety of topics tonight they spoke about ostomy routine (which led into a discussion about suppliers) epidural and why they started blogging among other things.

Overall it had a relaxed feel, kind of like eavesdropping on a conversation. There were a few technical issues – we had no video of one of them for a while, and all the volumes were different. I also had to refresh the page a few times, but they have been my internet connection. They were able to take questions via the text chat which was useful and made it interactive.

At times it got a bit technical, particularly the conversation about surgical pain relief and rectal sheathes, so in the future it would be good to have someone checking out any jargon and explaining it.

I think it is certainly an interesting development, and will watch to see how it goes – good luck girls!

 

Is sleeping with a stoma this bad?

I recently came across a relatively new IBD blog – crohnsfighting.com. The author had a permanent stoma formed in November last year, having had 3 years with one previously. Her most recent post is How I Sleep With a Stoma and when I read it for the first time last week, something did not sit comfortably with me. I have re-read it now, and want to respond from my own experience.

So just to present my credentials – I’ve had three different ileostomies two ends and a loop. I’ve had my current stoma for just over two years.

It is my belief that you should not be having regular leaks – unless you have some kind of hernia or a skin condition. That Louise suffered this, and wrecked two mattresses and who knows how much clothing is unacceptable in my mind. So how do you avoid this?

  1. Check your template

This is always my first piece of advice when people are having leaks. Most of the time when I have had a leak it is because my stoma has changed size. This happens quite a lot immediately after surgery, but can continue for at least 6 months, and maybe beyond. Even a small change can make a huge difference. Your stoma nurse can help you with the technique of getting the template right.

2. Body shape change

When recovering from surgery or in remission, or if we get ill again, we can lose or gain weight. Sometimes it happens quickly, sometimes slowly. I put some much needed weight on a while ago and this created crease around my stoma which needed to be filled with paste. I also had to switch to a convex bag. Coloplast have an online tool – Bodycheck – but also advise consulting your stoma nurse. Stoma in a Tea Cup recently reviewed Bodycheck – you can read it here.

3. Cleaning

I did not know that you get products to remove adhesive until just before my second stoma was closed. I was not a happy bunny, having been in the ripper category for about two years! Using adhesive remover spray or wipes and ensuring you cleanse around your stoma is important to getting your new bag to stick properly.

4. Accessories

If you are prone to leaks, then using some accessories like rings, flange extenders, belts or supports can either prevent leaks, prolong the time from leak starting to trouser change time, or just give you more confidence. I use rings and flange extenders. The Brava Elastic Tape is the worlds stickiest thing (NB may not be the stickiest thing) and even if I have a small leak, will contain it until I can get a change done.

The blog does contain some good advice. I always use a mattress protector (I’ve found the John Lewis one, although initially expensive to be excellent and durable)  and I guess disposable bed pads could be useful if you were having a period of leaks.

I guess the bed linen & PJs is a personal choice, and yes stool stain is tricky to get out of white sheets. However, I would reiterate – if your stoma is starting to have that much power over you, then seek advice from your stoma nurse or supply company – you should not be having leaks so regularly!

On eating habits, you will have to get to know your own body, as everyone’s transit time is different. This will also alter depending on how much of which bowel you have left. Your bowel works 24/7, and more so when you eat. Some people find it better to have a small snack immediately before bed to reduce gas build up – so this is one you will have to work out for you.

Louise recommends an alarm for patients with newly formed stomas, and this could be useful if you are on strong painkillers, but again hopefully won’t be necessary long term.

Owning a stoma takes some getting used to, and part of that is recognising the feelings of full bag, the start of a leak (warmth or itch under the flange) and finding your own rhythm of emptying. For me however, the disease or trauma that gave you your stoma is thing you have to battle – the stoma is something you learn to manage, with support, advice and some trial and error.

If you are struggling, there are lots of Facebook Groups who can offer support, and I have always found the ia forum very helpful (and much easier to keep track of). Plus there is your stoma nurse and your supply company. And if you get to the point where you fear going to bed – then speak to your GP, you might need some counselling. We all need a bit of help sometimes – you are not alone in this.

So, there you go. Maybe I have been lucky. Maybe not – but hopefully this is of comfort to some of you.