#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?

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.

 

2017 is here…

So we are into 2017 now. In fact it is nearly a year since my surgery to remove my failed internal pouch, rectum and anus. And my wound has still not healed. I saw the surgeon just before the new year, and am being referred to a plastic surgeon to see if something can be done. Since then it seems to have started healing a bit better, so who knows!

I was thinking about 2016 for me and my IBD. 4 hospital admissions (2 planned, 2 not) and over 200 dressing change appointments. I’ve had it dressed in England, Wales and Northern Ireland, mostly 7 days a week. It has been hugely disruptive, albeit that most of the time it has not been painful. Plans have been cancelled, or not made on the first place.

And although now I don’t have any large bowel left to become inflammed – so some people would say I am cured – I could still have a recurrance of extra -intestinal symptoms like the arthritis I’ve had before, and of course the IBD favourite – fatigue.

It’s hard to know with a full time job and a two year old to run after why I’m tired sometimes. Is it just life, or is it IBD? Right now. my body is also trying to heal the wound cavity which takes extra energy too. And that make sit very easy to do nothing else. Exercise is tricky with a wound, but seeing friends, hitting the spoken word scene or even just going out for a walk all have taken too much of a back seat in the last 12 months.

That also means the blog doesn’t get as much attention as it should, and I’ve been thinking about that. I’ve just given it a new look (let me know what you think) but there are some great IBD blogs out there, so I need to think about what I bring to the party.

Anyway, it’s getting late. I still need to plan #IBDHour for Thursday and write a rant about the NHS… Have a good rest of weekend.

So about these #HAWMC blogs…

You may have noticed that they stopped appearing. I made a good start and them written and scheduled to publish for about the first 5 days. Then I did a couple on the day. Then I got behind. Then I had to plan #IBDHour (which went really well, and you can the Storify here) and now I am in hospital again…

So as you know since my operation in January I’ve been having loads of issues getting the wound where my rectum was to heal. I was readmitted in July for VAC therapy, have had magic gels, packing, repeated infections and antibiotics. Last Monday following the latest course of antibiotics, we began another negative pressure therapy called PICO which is a tiny little pump. 


Whether or not it was linked to that or not, by Wednesday I was reporting some pain and a small hole had developed close by. 


On Thursday I felt pretty rough, but wondered if it might be the sickness bug going around work, and by the afternoon felt a bit better. On Friday the nurse doing the dressing wasn’t happy with the discharge from that hole, so in consultation with a GP sent me to the surgical assessment unit at the Bristol Royal Infimary, a department I know very well, and many of the staff recognse me. I should probably sponsor a chair or a bed.


Anyway I was seen and antibiotics were started. The consultant beleived that an abscess had formed, found it’s way out through an old fistula scar and had drained. I explained my recent history and my concerns and am waiting for an MRI scan after it was decided I couldn’t have a CT scan because 1) I’ve had too many and 2) An MRI should show us what is going on. The IV antibiotics continue.

It also meant I missed my Aston Martin driving experience, and lunch with Joanh’s godparents. However right now I just want to be reassured that there is not another collection waiting to feed more abscesses, and that means a few days in hospital…

First #IBDHour – Great Success!

So last night was the first #IBDHour over on Twitter. After a slow start we had 5 or 6 people answering all the questions, and a few other lurkers liking and RTing.

If you missed it, you can see the whole thing through the magic of Storify here.

Next one is on 20th October. If you took part, let me know what you thought, and what topics you’d like to discuss in the future!

 

What’s this #IBDHour all about then?

So if you’ve been over on my Twitter recently then you might have spotted that I am launching #IBDHour – the first UK based Twitter Hour for Inflammatory Bowel Disease!

I am a massive fan of Twitter, and think it will be a great way to build the UK IBD community – as well as open it up to contributions from all over the world (where the time difference isn’t too much anyway.

If you’re not familiar with the concept of Twitter hours, then they go something like this. At a pre-arranged time, someone (the host) will start the hour off with some questions for discussion, and all the people participating use the hashtag – in this case #IBDHour – and answer the questions and then respond to other people.

The first event is going to be on 15th September at 8pm UK time, and the theme is going to be ‘Support’.

I’m really excited about it, and hope it will allow people from all over to have a virtual conversation.

If your interested in taking part, then follow @IBDHour on Twitter!