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Health

Ostomy life

(64 Posts)
baubles Mon 18-Jul-22 15:44:08

I’m wondering if anyone with experience of living with an ileostomy bag can give me some advice.

It’s eight weeks since I had emergency life saving surgery and woke up a couple of days later to discover that I have a permanent ileostomy.

The hospital dietitian gave me information on what I could and couldn’t eat ie absolutely nothing with skin or pips, no mushrooms of any kind and no raw vegetables. Now that the sun is shining I’m craving a big bowl of salad filled with lovely onions, peppers, tomatoes and cucumber.

I’m getting a little bit tired of well cooked veg!

Anyone with any experience?

lizzypopbottle Wed 20-Jul-22 14:28:09

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.

Shirley48 Wed 20-Jul-22 14:16:04

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

MawtheMerrier Wed 20-Jul-22 14:13:58

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?

devongranny Wed 20-Jul-22 14:04:43

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.

Sueki44 Wed 20-Jul-22 13:54:43

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.

Nannashirlz Wed 20-Jul-22 13:50:32

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.

MadeInYorkshire Wed 20-Jul-22 13:38:09

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!

StarDreamer Wed 20-Jul-22 13:12:19

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

greenlady102 Wed 20-Jul-22 13:01:49

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

baubles Tue 19-Jul-22 17:36:43

Thanks again for all the helpful advice, most appreciated.

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

Baggs Tue 19-Jul-22 14:26:02

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.

Baggs Tue 19-Jul-22 14:24:06

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

Smileless2012 Tue 19-Jul-22 13:49:52

Thanks from me too Marydoll.

pensionpat Tue 19-Jul-22 13:46:11

I suspect that individuals differ greatly in their life with stoma. My husband has had a colostomy and a urostomy for 17 years. He was given no advice as to what foods to avoid and once he was used to the mechanics of everything he has continued with his life and eats and drinks anything that he wants. You will become your own expert Baubles. Good luck and isn’t modern medicine wonderful!

TopsyIrene06 Tue 19-Jul-22 13:34:30

Marydoll. Thank you so much for explaining why we should be guarded when visiting unsupported sites. Very helpful.

Franbern Tue 19-Jul-22 13:03:20

when I first started having regular blockages, I was taken back to hospital each time. Eventually, I was checked out and told that adhesions to the operating areas were the problem. Then told, they could do a further operation and there was a fifty percent chance of an improvement and a fifty percent chance of things getting worse!!!

Decided at that point NOT to have any operation but to work out my own management plan.

This has worked very well for the past twenty plus years. Learn to recognise whatever is your early warning of a blockage. Never ignore that early warning and treat immediately.

In this way, I can now usually, sort out a blockage within three to four hours. Blockages in a stoma are very painful, I can only like it to being in labour, - but without the wonderful end to that (I have given birth to five babies, two of them at the same time).

Do talk to your ostomy nurse, also to the ostomy nurse at the company who is supplying your apparatus. Also, join up with people at your local Ia group, and, above all, take time. Your body has undergone a very major trauma - it will probably have saved your life - but it can take a long time to fully adjust.

Carry on leading a perfectly normal life -there is no reason for you not to do anything you wish with a stoma

harrigran Tue 19-Jul-22 08:55:54

I had problems with raw fruit so resorted to buying baby food such as stewed apple and pears, it is easily digested.
Six years on I manage a fairly normal diet but my mantra is everything in moderation. Ballooning bags can be a bit of a nightmare but like everything else we learn to cope.

StarDreamer Tue 19-Jul-22 07:32:37

I have now found that although neither Google Chrome nor Microsoft Edge displayed a panel such as the one that Marydoll posted, they did each notify Not secure but only in small type to the left of the web address of the page. I had not noticed that.

The issue appears to be that the Not secure message does not necessarily mean that there is anything wrong with the information in the website, it appears to refer to the fact that the information flow between the person using the website and the computer that hosts the website is unencrypted, so someone could be eavesdropping on the information and recording it and using it for some purpose.

So if, for example, it is a website such as a bank and the user was using internet banking and the site was not https, this could be a big security risk.

It is interesting that the website of the Ileostomy Association itself is https but upon entering the forum from that website, the forum is http and thus flagged as not secure. I don't know why, maybe the software that supports the forum does not have https capability, or some other reason.

It seems to me that the situation is similar to someone in everyday life potentially overhearing a conversation - if the discussion is on private matters then a big issue, but if the conversation is something like asking for how much a can of baked beans costs, then not so bad, thiugh the person does learn that the person is interested in knowing the cost of a can of baked beans.

Anyway, I just wanted to post this note for completeness.

Marydoll Mon 18-Jul-22 21:06:39

For SD

When I was teaching IT safety to both pupils and staff in our LA, the advice from the director of IT in our LA, was never to use sites which were not supported by HTTPS, because they are not guaranteed to be secure.
That is all I am saying.

SD, I understand your intentions were good, but I do not intend to get into a lengthy discussion with you about this.
I shall continue to be wary of unsupported sites, such as the one you gave the link to.

StarDreamer Mon 18-Jul-22 20:36:53

That link should be

iasupport.org/

StarDreamer Mon 18-Jul-22 20:36:01

No it does not.

A picture posted with no details of what was tried on which browser.

{{https://iasupport.org/]]

Smileless2012 Mon 18-Jul-22 20:33:01

Do you mean GN isn't a secure site or the link to the site StarDreamer provided isn't secure Marydoll?

ixion Mon 18-Jul-22 20:32:48

Baubles, this is not a secure site. I wouldn't go there. I'm sure your clinicians and fellow grans, who have experience of ^this, can help you. will be able to help you.
Marydoll 20:20:20

Wow, just goes to show!
Thank you!

Smileless2012 Mon 18-Jul-22 20:31:17

You have a great positive attitude Baubles, good for you.

My mum was encouraged to see her ileostomy bag as a friend as without the surgery she wouldn't have survived. She called hers Stella (Stella the stoma)smile.

StarDreamer Mon 18-Jul-22 20:26:48

How do you mean that it is not a secure site?