Tag Archives: crohn’s

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.

 

My IBD Story -Part One #CrohnsandColitisAwareness Week

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So as it’s Crohn’s & Colitis Awareness week, and I decided it is as good a time as any to recap my own IBD story. I’m going to start writing, it might get split over a few posts, but here goes…

Diagnosis

In early 2005, I noticed some blood in the bowl when I went to the toilet. Not a lot, but a bit. I’d been diagnosed with IBS (Irritable Bowel Syndrome) the year before, but didn’t have any of those symptoms. I thought it was probably haemorrhoids and got some over the counter cream, but when 3 months later it hadn’t stopped, I went to the GP. They did some tests, blood and stool I think, and I was referred for a colonoscopy – a camera up the bum.

Aside from the preparation for that being fairly horrific (top tip, if you ever have it, take the day off work) the camera test was OK, I was sent away and a week or so later went back to the GP and was told I had ulcerative colitis and was given some suppositories. I don’t remember seeing a hospital consultant, or being given any information – if I was I certainly didn’t properly take it in or appreciate what it meant to have this chronic condition.This was now May.

First Flare

In August, I was working supporting young people on a residential. I wasn’t getting much sleep because they did like to stay up late trying to start relationships and smoke out of the windows, the young scamps. I was getting some horrible crampy pains, but the IBS medication was helping. On the Friday I went to the GP and was given some steroid foam enemas. Off I went.

That Saturday I supported a group of young people to go to York. I remember on my lunch break gulping down a Burger King and then spending a long time in their toilet with cramping and diarrhoea. I don’t remember the Sunday (I probably slept a lot) but on the Monday morning I was fit for nothing. My mother took me to the GP who looked at me (looked, not examined) and wrote a letter to get me admitted to the local hospital.

More drugs!

So in the hospital they upped the steroid and gave them to me IV, as well as pain relief. They didn’t work. On the worse day I went to the toilet 13 times in the day, as well as over night. I was losing weight, my belly was distended. As a last gasp they tried Cyclosporine which is used as an anti-rejection drug after transplant (it’s a strong immunosuppressant).

That didn’t work either. The surgeon came around one Sunday, my belly was measured and was still swollen. I was told I was at risk of developing toxic mega-colon and by bowel perforating, and I was put on the surgical list. I was visited by a stoma nurse, a cross was put on my abdomen and I was wheeled down to theatre. I’d been in the hospital about 3 weeks at this point. I asked for a shark bite finish.

Recovery – Part 1

I woke up in the surgical recovery unit – just below intensive care. I had a nurse by my bed pretty much 24 hours a day. I had a drain, maybe two, a catheter, a naso-gastric tube, an epidural (I think). Oh, and a big long scar right down my front closed with staples. And a stoma, a little red thing poking out of me into a clear plastic bag.

Despite all this, I felt better. I’d had a metre and a half of diseased organ removed from my body. After a few days I was moved back to the ward, and things were going OK. I had lost a lot of weight by this point so was being fed through a drip (TPN) as I wasn’t yet able to tolerate food, and had just started having water again. unfortunately I developed septicaemia from the TPN needle and there was a probable kink in my bowel. In a matter of hours I went from OK to very sick, and was taken back to theatre, re-opened up and then stapled back together again. Cue another stay in surgical recovery.

Recovery – Part 2

I was moved back to the ward again, and a few days later a doctor came around and drew the curtain around my bed. He told me I had MRSA – detected when I was swabbed post op the second time. I knew very little about it and thought I might die – but it is treatable with really string, vein burning antibitoics. So I had those, and a nasal cream and a special body wash. I had to be barrier nursed, and all my visitors had to don aprons and gloves to come and see me too.

The MRSA was contained, I started eating and drinking again. By the time I left the hospital after 7 weeks I was 3 stone lighter than when I went in – I must have been lighter again at some point during my stay. I don’t have many photos from that time, but I attended my Gold Duke of Edinburgh Award presentation a few months after being discharged, and as you can I see I still look a bit thin.

D of E Presentation

And so I was off into the big wide world to learn to live with a stoma.

New Job

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So a week ago I started a new job. I am now the CAF Coordinator (Gateway) for the same local authority. This has been a massive change for me, but it was a change that seemed to be necessary. 

Leaving Youth Work

The first big, and obvious change is that I am no longer a youth worker. That was not an easy decision to take, to move away from the job and profession I have done for 8 years. That I paid Durham University to train me in. A profession that I have fought to protect as a member of the Community & Youth Worker section of Unite the Union.

So had I become disillusioned? Discovered I was in a job I hate? Feared for the future? No. This was a very personal decision, and one that as time goes on and the impact becomes clearer feels less and less heavy inside. Let me explain.

Living with Crohn’s Disease

In February this year the diagnosis of my inflammatory bowel disease (IBD) was changed from ulcerative colitis to Crohn’s disease. Now both diseases attack the digestive tract, causing ulceration which can bleed and cause painful cramps and bouts of diarrhea, however ulcerative colitis is limited to the large bowel, whereas Crohn’s disease is limited to the large bowel (colon) – more information about both conditions is available from Crohn’s & Colitis UK. Now back in 2005 surgeons removed my colon, and although there have been residual issues with the bits of the body that are that tissue and this was mostly controlled with medication, potentially now I could have the cramping, bleeding and other ill effects from an a attack in any other part of my digestive tract. Hopefully the medication I am on will keep the risk of that to a minimum, but it did make me think about my lifestyle.

My Life as a Youth Worker

So in my youth work role I worked 3 evenings a week – so was finishing work at 21.15 – 21.45. It takes about 25 – 30 minutes for me to then drive home from where I was working. Then I needed to get dinner, unwind, and go to bed. Now on those days I tried not to go in until 2pm, and after a period of illness was instructed not to do what in youth work were called ‘3 session days’. That was good for me, but meant I sometimes missed stuff I wanted to do, or felt I needed to do to perform well at my job. I want to emphasise that this was about me, not my employer, who has been very supportive. So Monday – Wednesday I did late nights, then Thursday & Friday normal hours until 37 hours a week were done. The need to unwind though left me tired, sore and not up for doing much at the weekends. This was OK for a while, but long term was a strain on my relationship.

Healthy eating is something that is important to manage any health condition, as well as in life generally, and one of my other issues with the youth worker life style was that it was not conjusive to that. Now there are youth workers (and shift workers) out there who manage it – I didn’t.

So these factors, long term, added up and it was time for a change. In my next post I’ll tell you about what I have discovered since the new job started, including bathroom rotas, evenings and a social life in Chippenham…