Post EUA Update

So a few days have passed since my Exam Under Anaesthetic (EUA) on Wednesday. The procedure went well and I was discharged as planned on the same day. No collection was found and there was no evidence of anything being left behind which has stopped it healing.

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This is of course good and bad news – no evidence of infection or collection is good, but it does mean we don’t have a reason for the slow healing! In between the plastic surgeon appointment and the EUA I did have a weekend where the wound bleed quite a bitnmore than it had been – it may be that if there was something physical there it has now passed.

So whilst I did not come away with any answers, I did come away with a new treatment plan. I have been prescribed a medication called Ortem – a topical metronizadole ointment. As I discovered when I tried to get it fromt he pharmacy (mor eon that in a moment) it is not yet fully licenced in the UK – however there has been some very encouraging research into this kind of wound being treated with it.

Now the hospital pharmacy didn’t have it, but I was told it should be available from my usual pharmacy. I got home mid-afternoon, and was going to have a little sleep, but decided to just call them and check if they had it – I thought perhaps they might need to order it in However, it didn’t appear on the computer…

Now at this point, in need of sleep, a bit spaced out I faced a dilema. Having been told by the hospital they didn’t have it, but community phramcy should, and then by community pharmacy that they don’t have it but hospital might it would be very easy to get pulled into an endless loop of calling consultants secretaries and hoping for call backs, so I put my best patient advocate hat on and got on Google…

Within 5 minutes I was speaking to Natalie at the manufacturer, who had advised me that the drug was unlicenced but available as a special order, and that my regular phramacy already have an account! She just needed to email them an order form…

So I went down to the pharmacy to try and get things moving – Lloyds have there own process so had to call head office who were not immediatly able to spring into action… The final result of this is that the drug is now en route via courier, but because of the bank holiday I won’t get it until Tuesday – so we are getting there slowly…

Since Wednesday I have been really tired – napping each day for several hours despite good nights of sleep too – although I didn’t sleep well on Wednesday night. The left side of my face under my glasses has also swollen into what could be the BIGGEST SPOT EVER – but hopefully I can treat that before it happens.

So, it’s lots of sleep, some more patience and then maybe this wonder ointment can do it’s thing…

Wound Update

I realise that it has been a little whilse since I did an update about me and my wound, so here goes…

So, the wound where I had my anus and rectum (and internal pouch) removed (proctectomy) has still not healed – now nearly 15 months after the operation. This operation is known in IBD/ ostomy circles as ‘The Barbie Butt’. The cavity is still about 4 cms deep, and I’ve been having near daily dressings since May 2016.

Wound End March 2017

You can also see a little hole (top right) where there was previously a fistula. – this picture is from the end of March.

I saw my surgeon just before new year, he referred me to a plastic surgeon to consider closing the wound. The plastic surgeon said no – because unless we know why it hasn’t healed then it is likely to just breakdown again. His opinion was something has been left behind – could be a bit of pouch, a hair, a stitch – so the plan is for me to have an examination under anaesthetic (EUA) in a few weeks time conducted by the two colorectal consultants who did the excision. Hopefully threy will be able to work out what is going on and fix it, and then it will just have to heal, rather than need further surgery – but there really is no way of knowing right now.

I would be lying if I said I am OK with this. I am not in pain, able to work and do most things – although I have not really done exercise until very recently when a plan was put together. However the almost daily dressing changes have meant leaving work early and catching up and needing to be close to home at weekends (trips away are OK, but day trips are difficult) and of course that doesn’t just impact on me. I have had moments, particularly after Christmas and coming up to the one year anniversery of the surgery where I have been low and teary about it all. I am fortunate to have a very supportive family and friends.

So now I am trying to look forwards – hoping that after this procedure all will heal up and we can get back to normality. The nurses often comment how upbeat and positive I seem to be – I work at heard at keeping that way so I don’t get swept into a downward spiral. So when they knock me out in a week or so, lets hope that is the beginning of the end.

 

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.

 

The NHS – Please use responsibly

Unless you’ve been hiding away from the news because of Trump & Brexit fatigue, you can’t have helped but notice that the NHS is having a bit of a crisis in hospitals. And of course over the last few years there have been issues with the numbers of doctors prepared to be GPs (and subsequent availability of appointments) , junior doctor contracts and nurse shortages. Much of this is linked to politics, and I won’t be exploring that in this post – but I’m happy to have a discussion about it with anyone who wants one!

Ulcerative colitis is a chronic condition – there is no cure. As such, I am likely to be a higher than average user of NHS services for all of my life. In the last few years I have been a very heavy user of the NHS – both GP and other primary care services (practice nurses, dressing clinic) and hospitals. I think that all of us have a responsibility to use the NHS responsibly, and those of us who use it more need to do so especially. This was the topic of discussion in January’s #IBDHour which you can read here – and what follows are my thoughts on how we can use, and preserve, the NHS for ourselves and everyone else.

Two Golden Rules

  1. Use the least specialist bit of the NHS that you can for the issue you have

If you need to call 999, then you need to call 999. However, if you can have a phone consultation with your GP, then do that. I’ll go into the different NHS services shortly…

2. If you have an appointment –  use it!

In 2012/13 it was estimated that more than 12 million GP appointments were missed, costing the NHS in excess of £162 million. Around 6.9 million hospital outpatient appointments were missed, with an average cost of £108 per appointment. That is a lot of money, and a lot of missed appointments!

GPs

IBD patients seem to have very variable experiences of GPs. If you already have a diagnosis and a treatment plan however, they may be the first port of call – particularly if you get new symptoms or you are not sure what is happening. And GPs are great! They can treat infections, refer on to appropriate specialists, including mental health support and in a flare situation start treatment. However, several GPs have told me that I probably know more about my disease than they do, so don’t be afraid to speak up about what you think is happening.

GPs other key role is as the gateway to other parts of the NHS. When I had abscesses, I couldn’t just rock up to the surgical assessment unit. I could try and call my consultant, but the most reliable and efficient pathway was to see my GP who would assess if oral antibiotics were required or if it had gone beyond that – or often start me on the antibiotics and review me a few days later.

Out of Hours Services

I’ve had great support from my local out of hours service over the years, but it seems that these are patchy. You could see a nurse or GP somewhere near you, and it’s a great alternative to waiting for hours in A&E.

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Formerly known as NHS Direct they get a lot of stick, but if you accept that they don’t have specialist knowledge, but do have 24 hour access to medicla professionals and can alert whereever they refer you on to if needed – or send an ambulance – then you should get on fine.

Pharmacists

I think that pharmacists are much under used. In #IBDHour we had some great examples of how pharmacists have made life better for people, from warning about the dangers of NSAIDs in IBD to ensuring people had drugs in a form they could use!

Another great thing is that you don’t need an appointment to see a pharmacist, and if they don’t know the answer or can’t help then you haven’t lost much! So if you have possible side effects from a treatment, or low grade symptoms go and see them. It’s also important to make sure you engage with them – let them know what your diagnosis is so they can keep an eye out for inappropriate prescriptions (they’ll note it down, they don’t remember everyone…). Dispensing assistants can be great too – one told me about the NHS pre-payment certificate which saved me loads of money when I had my internal pouch and wasn’t entitled to free prescriptions.

Consultants

If you have IBD then you will need access to a consultant sometimes. Gastroenteroligists will put a treatment plan in place and any monitoring such as regular blood tests. However, you might not see them very often and get your prescriptions repated by your GP. It can be frustrating if your GP doesn’t know the answers to your queries to not have a direct line to your consultant. Some do give out numbers, or you can call secretaries and leave a message, or ask your GP to write a letter.

Surgeons come into play here too sometimes, and you’ll be introduced to them either as an in-patient or when your GI thinks it is time to see them. They may also put other things in place and take over your care (I’ve been under the care of surgeons for most of my time as an IBD patient).

Specialist Nurses

Specialist IBD Nurses, stoma and internal pouch specialist nurses are often our first port of call when things are not as we would like. However it is estimated by Crohn’s and Colitis UK that 1 in 3 patients don’t have access to an IBD Nurse.

If you have access there is often a phone line where you can leave a message and get a call back, although how long this takes seems to vary. IBD Nurses are often involved in the monitoring and arrangement of biologic treatments, and will also have clinics to offer support.

Crohn’s & Colitis UK have a campaign to raise awareness of the gaps in this service.

You’ll need to find out what is acceptable locally, but they are not the people to call for appointment queries!

If you have a stoma, as well as your local stoma care nurses, your ostomy supply delivery company may have nurses you can speak to over the phone, and some of them support the nurses in some areas.

So we have a whole range of treatment options available to us for when we have questions, and when things are not goign so well – but that doesn’t mean we have to go straight to A&E.

How are you?

I’m putting together a new poem about what people with IBD or any chronic or invisible illness really mean when they say ‘I’m fine’ in response to the question in the title. If you would like to get involved please comment or message me!