Tag Archives: #getyourbellyout

Small victories

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Firstly, apologies for being a little quieter than I would have liked to be for World IBD Day. On Wednesday we got ‘the call’ from nursery – little man has spots, can you get them checked out. Turned out to be Chicken Pox II – The Return. So lots of stuff had to be moved and cancelled, and because the pox prevented him sleeping, we didn’t sleep either until last night. Hopefully he’ll be able to go back to nursery on Tuesday.

We have been very grateful for the help, support and advice of our GP surgery (urgent care nurse & GP), NHS 111 and out of hours GP and community pharmacist in trying to make him at least comfortable whilst this has been going on. When your child is having really high temperatures and symptoms which when Googled look terrible, it can be difficult to resist jumping in the car and heading for A&E – but I took my own advice from here and we managed it, and our anxieties without hours and hours of waiting.

Anyway, the new treatment that I was started on after my EUA seems to be working, and so yesterday for the first time in 4 years I was able to dispense with the little net pants I’ve used to hold my incontinence pads in place (see picture). I’m still wearing a small pad, but it’s of the type you can pick up in the supermarket rather than the full inco pad I had been wearing.

I have to admit it was a bit odd being less… restricted. However, for me it is a huge step forward to this wound being healed – less discharge so less need for a pad. And that is a step towards exercise and being able to be more active with my family and in life. The fact that I only have to have the wound checked twice a week, rather than dressed everyday has already made a huge difference to our lives – and so I am very much looking forward to it all being over!

So for now I just have to decide what to do with myc ollection of net pants. A ritual burning? Or perhaps I’ll put them on eBay – I understand there is a market for such things…

Post EUA Update

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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

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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.

 

Is sleeping with a stoma this bad?

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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.

 

An open letter to my friends & family

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 Hi everyone,

So as you know I had big surgery in January 2016. The wound hasn’t healed, and next week I’m going to see a plastic surgeon about it.

I’ve had over 200 dressings applied, which started in May. Most of the time that has been 7 days a week. It has been very disruptive to my life, to our lives as a family. Catching up with missed work. Being tired from growing a new buttock. 2 further hospital admissions.

And that has meant plans have been cancelled. Sometimes rearranged. Or not made at all. And as it has gone on longer and longer, fewer and fewer plans got made. 

And I’ve tried to be upbeat – no, it doesn’t hurt, yes it’s still going on, ha ha, growing a new bum cheek – but it’s getting harder. Hopefully next week will give me a time frame for getting it sorted.

And so this is an apology for plans cancelled or not made at all, birthday cards that came late, phone calls not made.

And I’m not ready to promise, but there is a hope that it will all be over soon. Then plans can be made, games played, meats BBQd and drinks drunk.

So, please bear with me, it has been a bit limbo-Esque, and there is much I want to do once I no longer have a hole in my bottom.

 

 

 

My IBD Story Part 2 – #IBDAwarenessWeek

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This is part two of my IBD Story. In part one, I ended up in hospital, and left with a stoma…

It took a little while to get back to any kind of normal. I was self-employed at the time, and had to claim income support as I was unable to work. I still don’t understand how anyone could falsely claim benefits, it was a pretty mammoth task to make a claim.

Having been discharged in September, I managed to get myself a new job in December leaving my temping and other bits and bobs to become an arts youth worker. I returned to fencing training, gained weight and was pretty healthy. I managed the bag OK – a few leaks but nothing major.

I had a number of meetings with a colorectal surgeon to discuss the possibility of an ileo-anal pouch, a kind of reversal which would rework my internal plumbing, eventually removing the stoma and letting me poo sitting on the toilet again. You can read more about pouches here. And so in August 2006 I was admitted for the pouch formation surgery. Another big slice down the middle. Recovery was OK, although the new stoma – a loop ileostomy – was very flush to the skin and much more difficult to manage. I returned to work in November, but only managed a day – I was plagued with pain in my bottom. I needed stronger and stronger pain killers. Examinations were inconclusive. I sometimes had to get up in the middle of the night to have a bath.

On the 2nd January 2007 I woke up in the middle of the night to go to the toilet. I couldn’t get myself out of bed, my legs just didn’t seem to want to move. I assumed I was just really tired and went back to sleep. That morning, I could still not move my legs – my knees had swollen up. After much wrangling a GP visited me at home and prescribed (eventually) an anti-inflammatory. I saw my consultant again, and he sent me for a second opinion.

Enter The Professor

I went to see Professor Nicholls, who had worked alongside Alan Parkes to develop the pouch technique. At this time I was a private patient, and the consultation at The London Clinic was like entering a different world. I was booked in for an EUA – an Examination Under Anaesthetic. This revealed that the rectal cuff had completely denuded of lining. When my colon was removed, a rectal stump was left (which would allow the internal pouch to be connected). It was this tissue that was affected. The solution would be to remove as much of that tissue as possible, and then hand stitch the pouch just above the anus – this was how the operation was originally done, before the advent of the surgical stapler which leaves more of the rectum intact, but reduces time under anaesthetic. I was booked in for surgery in February.

Another laperotomy. Still a difficult stoma to manage. More MRSA. However, the pain was much reduced. Eventually, I returned to work, having just a short break in June to have my stoma closed and my pouch activated. Following that minor procedure, whilst walking around the hospital to try and get my guts going again, I produced a 10 second fart. It was a proud moment.

So, it had been a tough couple of years. However, I had my pouch, so things should get better, right?

IBD Awareness Week 2016

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So today is the start of Crohn’s & Colitis Awarenss Week 2016, running from 1st – 7th December.

To start us off, here is some key information from UK charity Crohn’s & Colitis UK.

If you’d like to make a donation, you can text CCAW22 £3 (or any amount) to 70070 or donate online.

I’ll be sharing some stuff this week, if there is anything you’d like to know, get in touch!

So about these #HAWMC blogs…

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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…

Wound News – October Edition

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Well I never thought I would be writing this post.

To recap, my surgery was at the end of January – a major operation to remove my failed internal pouch, rectum and anus. There were two wounds – the big stapled one at the firnt and the smaller one at th eback. This initialy healed well, then broke down and got really painful, and I ended up back in hospital in July for vac therapy for a week.

The vac therapy was syccessful in awakening the wound and remonding it had to heal – but it was still pretty big (about 7 coms deep). Since then it has been variously packed, had a gel treatment and is now being packed agin, We have got down to every other day, but it is still going on, And on. And on.

It isn’t painful which is good. It is still a bit leaky, and I have had to go back to the big inco pads in order to save on laundry. I’ve gone back to work full time, but it is really frustrating. The nurses at my practice, who have all had to endure far more of my bottom than should really be asked of them, have been great, and a few blips aside the bits of the NHS are now all working together. It is however taking much longer than I was prepared for.

As ever I am trying to be positive, but this week we are going on holiday as a family, and I had really been looking forward, this year, to be being able to swim with my little boy. He loves swimming, and his whole face lights up in the water. And I’m not going to be able to. Which means his mum is going to have to do it all. Again.

And I know it’s not forever, that it is getting better each day. It is frustrating to not be able to exercise, to still be wearing pads, to need shares in Parazone toilet wipes and be taking so many appointments at my local practice – all whilst returning to full time work and trying to parent and live life to the best of my ability.

Being realistic, I think this could still be goign on In November, hopefully be done an ddusted by Christmas. So watch out for more Wound News – but lets hope there isn’t too much more of it.

A surge in coverage

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So in the last few weeks there has been a sudden surge of coverage of Inflammatory Bowel Disease (IBD) and related issues in the media.

Medals!

First off we had the news that two Olympic medal winners have IBD – both silver medalists in the pool. Siobhain-Marie O’Connor of Team GB has ulcerative colitis, and Kathleen Baker of the USA has Crohn’s Disease. They are not the first Olympians with IBD – Sir Steve Redgrave off of rowing is a CCUK ambassador, as is Ali Jawad, Paralympic Weight Lifter. There followed a couple of good articles over on The Mighty about how that might make other IBD patients feel – you can see those here and here.

For me, I say hats off to them. I don’t think I could ever have been an Olympic level athlete before I was ill, and certainly not whilst I have been ill, so it is testament to them that they have achieved so much whilst being ill – long may they have continued success. It also motivated me to finally go and do my first Park Run at the weekend – I walked it, but it felt good to finally be doing some exercise again.

Nights Out

unfortunately the next story that popped up was less positive. An IBD sufferer was on a night out, and had a sudden need to use a toilet. He went to the (open) McDonalds restaurant in Huddersfield to ask to use the toilet, showing his ‘Can’t Wait’ card to security and staff, but he was then asked to leave – you can read more here.

Now I don’t do night’s out very often, but it seems very sad to me that there was no flexibility for this young man to be able to use the facilities despite being able to evidence that he had a need. Perhaps the staff didn’t think that someone with such a requirement should be on a night out at all? I think that this is one of the areas that needs awareness to be raised – we might not be ill all the time, but we sometimes need a bit of extra help!

More Toilet News

Supermarket ASDA (favourite of my sister in law) have taken a great step forward with the signage on their disabled toilets – reminding people that not all disabilities are visible. This is great, although I’ve never had an issue myself, it took me a while to build up the confidence to use a disabled toilet without fear of the stare – and I think having a bag gives me an extra weapon to flash if challenged. I’ve needed them in particular in the last few years when I’ve been wearing inco pads – although not all disabled toilets have disposal bins. If I was in charge, all toilets would be accessible toilets with proper disposal bins. And all car parking spaces would be parent and child sized!

Down With the Kids

Our final piece of news relates to a perhaps ill-advised MTV blog about the movie Sausage Party in which it was suggested that a possible sequel – Colostomy Party – could be a hit. There was some real anger on the various Facebook groups and on Twitter from people with IBD and colostomies that once again these devices were being presented as comical, rather than life saving. This follows on, apparently, from recent references on Eastenders and Hollyoaks to them being something that only old people have, and resulted in a very positive piece in Metro by Hattie Gladwell.

There was a counter argument that it allows for some education and challenge (the saying being no publicity is bad publicity) and personally within the context of the blog I don’t think it the worst thing I have ever seen – however for some people it will reinforce their thinking, so lets hope they also see things like the Metro article.

If you spot any IBD news, do let me know by commenting or dropping me a Tweet @doobarz