New ileostomy and struggling

Hi SteveC123 and welcome to the group.

I’m sorry to read that you are struggling a bit at the moment, I have had a permanent colostomy for more than 5 years so the challenges were different to those of an ileostomy, but hopefully some of the group will come along and share their experiences.

What I can say, is that it takes time for you to adapt to this change and your surgery is very recent. Stomas of any type take time to heal and settle so hopefully things will improve as you recover. 

It took time for me to adapt, and I had a lot of ballooning and wind in the early days, but this did not last for a long time. I still can have wind of course and it depends on what I have eaten. What is your diet like? It can be helpful to keep a diary of what you’re eating to see if things in particular might give you more wind. Certain things I know will make wind an issue for me, but nothing as much as you are experiencing which I can understand will be distressing and keeping you from sleeping. 

Never apologise for having a rant here! We all understand the challenges of life changing surgery but be kind to yourself and try to accept that you’ve been through a lot and you need to recover. I hope others might have some advice for you and that you continue to recover without putting too much pressure on yourself.

Sarah xx

Hello SteveC123,

Mine make strange noises at times, mostly when I have carbonated drinks, lager or cider. Make sure that vegetables are cooked soft and fruit is ripe to avoid temporary blockages. Chew your food thoroughly. What suits you will be trial and error. I find plain food such as rice, pasta, skinned jacket potato, porridge, etc. don't cause a problem.

Night time is the worst because there is no background noise

Should you get a blockage then drink a can of full fat cola, which should shift it. I don't care about my noises - at least I can't fart!!

Dulac 

Hi SteveC123 

Sorry to hear that you're a bit overwhelmed at the minute but it's really early days for you. It's a bit of a learning curve but please take heart - it will improve.

 SarahH21  and Dulac have both given you great advice. Can I just add a wee bit more? I'm not sure what your diet is but, in the early days, I found that eating little and often helped as my stoma tends to be noisy when I'm hungry. It always works better if food is passing through slowly but regularly. So I used to split my meals up a bit, then spread them throughout the day. Maybe some cereal at breakfast, banana mid morning, sandwich for lunch, yogurt mid afternoon, chicken or fish with mash and soft veg at teatime, couple of plain biscuits mid evening.  Chew well and eat slowly (to avoid gulping in air). That was for the first few weeks anyhow, then start to introduce new foods slowly after that. Just one thing at a time, and not too much, till you see how the stoma reacts. 

It's an ileostomy I have, coming up to 4 years now, and I can eat anything (although very careful with some things like nuts and mushrooms). Fizzy drinks cause some ballooning but nothing disastrous.

At the moment you're probably on high alert, wondering what your stoma is about to do next, every noise, every gurgle. That's normal. It will settle down though and you'll start to get used to it's ways and be able to relax  more so please don't get too disheartened.

Hope this helps.

X

I thought I should add an update. I saw my stoma nurse yesterday and she changed the type of bag and also gave me a support band. One or both of those has helped the noise problem immensely, it’s a big relief! I suspect the the band is causing the gap from the stoma to the bag to be much smaller hence muffling the noise. Thank you all for your support. 

my insides still feel like they’ve been pulled around and are uncomfortable but I guess that will settle as things heal and settle. 

They have been. From experience the surface wounds healed in a few weeks. The internal bits took about 12 weeks to settle down completely  I followed my instincts with regard to activity, day to day routine, etc.

Dulac 

It'll improve Steve. I had an ileostomy about 5 months ago. Certainly problems with ballooning, especially at night in the early days. I was getting up 4 or 5 times, diet is a big influence especially in the first few months. Noisy especially after food. You can release air if you invert the bag ,& release but can be a bit smelly if you're with someone. I find now that certain foods like beans & salad will produce more wind. I tend to just manage it now rather than restrict my diet. 

For you it is really early days(everyone was saying that to me at your stage). You will learn how to manage your new reality so don't despair.