Ostomy life

Thanks from me too Marydoll.

I went to iasupport.org. It does not look problematic to me: iasupport.org

When I copied the link, what is in my post above was preceded by https:// which just doesn't show when the link is pasted.

Thanks again for all the helpful advice, most appreciated.

I’m sure I will indeed become my own expert.

My late DH had a stoma and once he was confident in managing it, he ate and drank what he liked. Its is important to take your time over adjustment and re learning about your digestive system and yes it will vary massively from person to person. I have no idea why your dietician said what they did.....certainly colostomy UK don't say anything nearly so prescriptive. www.colostomyuk.org/wp-content/uploads/2019/12/How-will-a-Colostomy-affect-me-2019.pdf

For the avoidance of doubt, a colostomy and an ileostomy are not the same.

I had an ileostomy for 7 years and a colostomy for 10 years .... GENERALLY I have always been able to eat most things, although nuts have been an issue in the past, my fault for eating too much of them!

Try things, writing a food diary, and chew and chew and chew some more. Try them 3 times each and keep adding things whilst writing it down what effect they have an your output. I used to be a salad freak and ate loads of it with no effect when I had my ileo.

If on Facebook, join the Colostomy UK support group - anyone with a stoma welcome, and there will be someone there I reckon 24/7 if having difficulties - you will get much better advice from someone with a stoma than any stoma nurse in my opinion!

I assume you cam out of hospital with the bags that you were given there? Does it suit you? Because if not you do not have to stay with that one, you can try all sorts of types and manufacturers - often the Stoma Nurses are sponsored by manufacturers so will only get offered one type. I have befriended a lady on my Mum's housing complex who has just had one and had no idea about the products etc you can try ... once you have found the one that suits that doesn't leak and is comfy, you can stay with that one, but the Stoma |Nurses tend not to tell you lots of things.

Have they told you about mucous?? Your bowel will continue to produce this and it is something that you will pass in the normal way - lots of people aren't told and nearly have a fit when it happens!

Please PM me if you have any questions - very happy to help. We ostomates have all been in the same boat, knowing nothing and are a very supportive bunch, so NO question is a silly one!

Sorry I don’t have any advice on helping you but I did grow up with my dad having a IIeostomy his was was for life and I do remember his nurse being a great help in fact she was the one who showed us all the bags and belts etc. and every time we went as kids to hospital she would ask if we wanted to ask her anything but that’s so many years ago no online help in them or food to avoid with my dad it was trial and error. So guess it’s thanks to ppl like him how you know about foods to avoid etc as I’m talking in early 70s I do remember he couldn’t eat rich foods as a child that grew up all my life with one I would show all your family members don’t be embarrassed by it. Even my kids would say grandad do you need a bag. You will learn what works for you my dad did and he didn’t eat baby food don’t think that it was available in them days. As he’s no longer here I can’t ask him I wish I could.

I agree with finding a stoma bag that suits! My husband tried 4-5 before he found one that was effective and comfortable. Only problem was no one would take back the ones surplus to requirements. We ended up sending them off to a charity who shipped them to the third world where people were using supermarket bags - poor things.

I have had an ileostomy for almost 40 years and it takes a while to settle down. I can eat most things although peas, corn and mushrooms are not easily digested. Try something you want on its own otherwise if it disagrees with you, you won’t know what has caused it. Drink more than you normally would have done. Good luck and give yourself time.

StarDreamer

For the avoidance of doubt, a colostomy and an ileostomy are not the same.

I am quite sure the many Gransnetters with personal experience of either or those with medical qualifications, or indeed those who merely take an academic interest , are perfectly clear about that?

I tend not to post advice on a thread where I have no knowledge of the topic being discussed

I don't have an ileostomy or colostomy bag. Ask your dietician if you can have home made smoothies. If you are allowed, get yourself a Magic Bullet (Amazon) and a recipe book. Blitz fruit, veg, frozen fruit etc and enjoy. My favourite is oat milk, jumbo oats, a chopped apple, Brazil nuts, walnuts, almonds and frozen berries. There are no lumps to block your stoma if you blitz it well. However, there are seeds to contend with in the frozen berries and they tend to survive the bullet blades, so do ask the dietician.

Just to add, you'll need a really wide straw. I got my stainless steel smoothie straws from Amazon.

MawtheMerrier

StarDreamer

For the avoidance of doubt, a colostomy and an ileostomy are not the same.

I am quite sure the many Gransnetters with personal experience of either or those with medical qualifications, or indeed those who merely take an academic interest , are perfectly clear about that?

Maybe you are quite sure but I posted that because the OP asked about an ileostomy and one poster provided a link to a colostomy website and not to an ileostomy website.

So my post was, and is, highly relevant to this thread.

Well done Baubles; you have come through quite an ordeal. I wish you well - good luck with your new challenge! x

I have had an ileostomy since 1979 and have never had a blockage due to food (touch wood!) My stoma has stopped working twice, but those occasions were due to a strangulated hernia and a twisted bowel. The former required emergency surgery and the latter untwisted itself in 48 hours.

Everyone with a stoma is different where food is concerned, although "No sweetcorn!" seems to be a general rule. I don't eat nuts, pulses (except baked beans, which are OK for some reason) or leafy green vegetables. I wouldn't eat lettuce in a salad but cucumber, tomatoes, onions, etc are all right. However, this is just my list, and other people will have different lists of does and don'ts.

My advice is to try new things in small amounts to see if they suit you, and try not to worry too much. You will soon get the hang of things.

Do remember that you need to really up your fluid intake. People whose digestive systems work normally, extract a lot of their daily fluid from their normal food. Ileostomists cannot do this, so it is absolutely imperative that you double the amount of fluid you take in than you did previously.

Salt intake may need slightly upping also.

Join the Ileostomy Association (Ia), they have a wonderful quarterly magazine which provides loads of advice and assistance and medical information.

LINK > iasupport.org/

StarDreamer my stoma nurse told me to make sure that anyone I spoke to about my ostomy to make sure they knew it isn’t a colostomy, which most people would assume it to be as that seems to be more well known.

Franbern, I’m finding that I do need to take in far more fluids as I’ve frequently had a very dry mouth and a headache so I’ve learned that lesson.

It just seems that all of my favourite foods are on the ‘could be dodgy’ list so I am going to take everyone’s advice to introduce new things little by little and keep a food diary.

I’ve seen my stoma nurse today and she’s given me a different bag to try, this is my third kind so let’s hope this is the one for me.

Once more I thank you all for taking the time to reply, it’s been most helpful.

Baubles If you have Facebook there is a closed group called Colostomy UK. Either you can join on behalf of your husband or he can join. It can be very helpful as people share all sorts to do with stomas. They talk bags, poo and give tips. There is always someone you can relate and you them. As it's a closed group it is purely for members. Hope this helps. Linda Wooster xx it covers Colostomy Ileostomy and Urostomy

Thanks Lindy, I’ll have a look. It’s actually me who has the ileostomy.

Another thing, whenever you are prescribed any sort of medication for other medical problems, do remind the person making the prescription that you have a permanent Ileostomy.

Anything that involves 'dissolving in the stomach' is not for you. I have been astonished how many GP;s and Senior Registrars at hospitals are not always au fait with this.

Just to say I have just had my evening meal,- a very large salad, which contained walnuts, tomatoes, celery, cucumber, mixed lettuces, red pepper, spring onions, raisins, and pom seeds. Have this five or six times a week. No problems. Do drink a large glass of water along with it.

Franbern wrote Anything that involves 'dissolving in the stomach' is not for you.

Why is that please?

Franbern wrote Just to say I have just had my evening meal,- a very large salad, which contained walnuts, tomatoes, celery, cucumber, mixed lettuces, red pepper, spring onions, raisins, and pom seeds.

What can be eaten varies from person to person. Sometimes greatly.