Adjusting to Life at Home

I’ve now been home for 2 weeks, giving me a chance to enjoy the unusually warm weather! So far, things have been going okay but there have been some incidents along the way – but as things are still very new, there’s bound to be one or two slip ups of some sort!

A very important thing with an ostomy is that you need to make sure you have plenty of supplies – you can never be without a bag after all! The stoma nurses from the hospital had set me up with a delivery company and had ordered some supplies to be delivered to  my house the day after I came back home. This mainly comprised of the bags I was using in the hospital, adhesive remover spray (to take the bag off) and dry wipes. I had been given some barrier rings in the hospital, which act as a second barrier between the output and your skin (apart from the bag, of course). As the output is relatively acidic, it can really irritate the skin badly if it leaks onto it, so it’s very important to try and protect the skin as much as you can.

Unfortunately, these barrier rings weren’t included in this delivery and I was starting to run out and I may have had a little panic! Thankfully, after phoning the delivery company, they were able to send me an ’emergency’ supply of barrier rings for which I was very grateful. Apart from anything else, I wanted to make sure that my stitches were being protected as well. It’s also worth saying that changing my bag took around 30 minutes to begin with on my own at home (I’d say now I’ve got it down to 20 minutes but most people can usually do it in 5 minutes after a while!) and that taking my bag off in the shower and letting my skin breathe and feel the warm water from the shower feels so, so, so good.

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The main challenge for me has not actually been trying to adjust to life with my stoma, or even accepting my stoma (as I know it can be very hard for a lot of people). For me, the main challenge has been my diet. Now, I love food – I always have, ever since I was young but throughout the years, eating hasn’t exactly been easy as whenever I have eaten anything, pain usually follows. I’ve been on many different diets but I now know the main culprits for causing me agony (unbearable pain) are gluten, dairy, onion, garlic, mushrooms, leeks and sweetcorn. As well as this, there are certain foods which make me more uncomfortable than others, mainly hard to digest food such as meat, high fibre foods and legumes. So, it’s safe to say that it’s fairly limiting and my diet – when I was last able to eat – is very different to my childhood diet.

So what can I actually eat now? At the moment, not a lot. My instructions from the dietician was to have low fibre (typical after any abdominal surgery) and low fat foods. I never really thought about having low fat foods beforehand and the reason I have been advised this is for two reasons:

  1. I have gastroparesis (slow emptying of the stomach) which is made worse when having high fat foods as they take much longer to digest.
  2. I’ve been having Ensure Plus Juce for over a year – as these are the only nutritional supplements on prescription that are lactose free. They also happen to be completely free of fibre – and fat. So my body hasn’t been digesting any fibre or fat for quite a while now.

This means that I’m still on a very restricted diet as I need to ease into things slowly and carefully – I try to aim for one new thing a day. I’m still having the Ensure nutritional drinks 2-3 times a day, in order to keep my calorie intake up and to make sure that I’m getting some basic vitamins – as well as a vitamin C tablet (dissolvable) and a multivitamin tablet as proper nutrition aids healing.

Apart from that, I begun by having soya yoghurts and puddings (good old Alpro!), ice lollies, soya custard, almond milk, chocolate almond milk, coconut water (good for hydration – especially in this heat), tomato soup and courgette soup. And then, I tried some soya ice cream.

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When mum and I went to the shops, we got some dairy free ice cream – we checked the fat content and it was higher than everything else I had had so far, but it still wasn’t high fat by any means. It was probably medium fat? I think low fat is classed as 3g or less per 100g and the ice cream was around 6g. This was still low fat for ice cream though, so I decided to bite the bullet and try some – why not?

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We took it home and I tried it the next day… and I wished I hadn’t. It tasted amazing. I was so happy. I ended up having 2 scoops of it (even though we said I’d only have 1 to see how it went, but I couldn’t resist!). It was that evening that I noticed my output had reduced… significantly. If you’re not familiar with ostomies and blockages then I’ll explain. Blockages are usually caused by things such as nuts, sweetcorn, popcorn, salad, fruit/vegetable skins and seeds etc. They become ‘stuck’ and it can become very dangerous. You can solve it using methods such as warm drinks, fruit juice, a warm bath/shower, a chocolate-y drink, abdomen massage, walking around.. and I ended up doing these things for days. The trouble was, it wasn’t a typical blockage.

A couple of days later, still with no relief, my abdomen had swollen up, I was getting no output apart from a very watery clear liquid every now and then. This had gotten a little more serious now. I felt very sick, I was having terrible reflux and I felt a fullness feeling from the bottom of my abdomen to the bottom of my chest. So I took my bag off, put on my bikini and sat in the bath, holding the shower head over my abdomen and stoma, whilst drinking plenty of fluids. This lasted for a couple of hours and then we thought I should really go to A&E to get checked out – although it was 10pm at this point, which wouldn’t have been ideal! My dad then suggested we get our neighbour to come and have a look – as, very luckily, he was a doctor (an oncologist to be precise) and he could advise whether we should go to A&E or not.

So there I was, sitting in the bath with my bikini on and stoma on show when our neighbour came up to see me (was slightly embarrassing but he didn’t seemed phased and was absolutely lovely). I told him about my history – and he knew about EDS to my delight! – and I then went to lie on my bed so he could examine me properly. When he listened to my abdomen through his stethoscope, he said that he could not hear anything. There was a lot of fluid and air in there but there were no sounds being made – and there is always some sort of noise going on in our digestive system! However, he didn’t seem too worried and said that if it wasn’t any better by the morning, go to A&E.

The next morning, as my abdomen wasn’t quite as swollen and some output had come through (but it was only very little bits), we decided to wait it out a little longer. However, after another two days of this, mum and I decided to go to A&E on the Friday morning to get it checked – bearing in mind I had the ice cream on Monday! After lots of waiting, I got taken to the emergency floor and had some blood tests, an ECG, blood pressure and temperature observations. Whilst waiting for the specialist doctor there, however, my stoma had actually started working again! Great timing. But we saw the doctor and she just said that it seems my digestive system had taken such a long time to fully digest that ice cream and that it must have caused a partial blockage somehow.

The good news is that my stomach has settled down slightly and I stuck to a complete liquid diet, again, just to give my digestive system a break. I can now go back to my diet plan and continue to try eating more food again (as I was mainly just having water, cranberry juice and chocolate almond milk beforehand!!).

This is going to be a long process – I just didn’t realise how sensitive my stomach is at the moment, so I have just got to be careful and eat/drink slowly as well!

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Slow and steady wins the race after all.

Charlotte x

4 thoughts on “Adjusting to Life at Home

  1. Well done you area brave girl Charlotte, good and positive wishes for you and your diet!

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  2. Hi Charlotte, I’m now in contact with your mother after sharing the story about my daughters gastro problems linked to EDS. I’m amazed how brave you have been throughout all this. I’m not sure my daughter Alexandra is mentally ready for an operation yet. Would love to meet you and your mum. Sending caring and positve thoughts. All the very best Chatlotte πŸ™‚ x

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    1. Hi! Yes my mother has told me πŸ™‚ I’d love to meet with you and your daughter – I believe my mother has sent you an email about dates? I look forward to meeting both of you and sending you both lots of love. Xx

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