Ileostomy output advice please

Hi cjb.0809 and welcome to the group.

Your mum is not long out from her surgery and things can take a bit of time to settle, so I don’t think you are necessarily doing anything wrong or that there is any issue for now, especially as she is following the correct mean plan.

I have a permanent colostomy which is different, and output with an ileostomy is generally more frequent and loose which is normal. 

Hopefully some members with an ileostomy will come along and reassure you, and best wishes to your mum as she continues her recovery.

Sarah xx

Early days, but note that an ileostomy catches waste before it can enter the colon, so the opportunity for the body to extract moisture from it is significantly interrupted and the product will be looser and more liquefied. I have an ileostomy and a colostomy, where the latter doesn't produce anything. Your mum's system should settle down after a couple of months and once she resumes a near normal diet she will learn what foods (and the manner in which they are cooked) suit her best. The main thing is that the ileostomy seems to be working OK so keep draining/changing the pouch regularly. Should the stoma ever become sluggish, or appear to be blocked, the stoma nurse told me to drink a can of 'full fat' cola as a simple remedy. Certainly rehydrate but you might find that plain water works as well as anything else!

Best

Dulac

Thank you SarahH21  and Dulac  for your replies and reassurance. I feel like a lot of it is trial and error at the moment, we’re just writing everything down to see if we can pinpoint certain triggers. 
Hopefully things will settle in a few weeks, thank you again xx

Yes, life with a stoma when you have just had surgery really does involve a lot of trial and error! 

I’d try, if you can, not to stress about it too much at this point-personally I lost a very large amount of weight after having stomas until I felt better and regained my appetite. It was a temporary thing, and the important thing is to keep hydrated-plain water is fine for that. 

Sarah xx

Hi cjb.0809 

It's quite early days for your mum. I remember that my output was all over the place in the beginning and some foods that gave me liquid output then (eggs, for instance) don't give me any trouble now.

GP advised me to increase dairy in the early days - so, milk, full fat yogurt, custard, rice pudding etc. Add butter to mashed potato etc. I also enjoyed a chicken sandwich with lots of butter and mayonnaise. Stewed apple (or in a crumble or tart) and ripe bananas are also good for thickening output. Try to avoid anything with artificial sweeteners as they can act as a laxative. Some folks have trouble with coffee too (try de-caf instead).

I think it's quite normal to lose weight after an ileostomy. I know that my appetite changed. Little and often food-wise is good. Gradually start to introduce new foods, just one at a time  an eggcup full. If your mum keeps a food diary she should be able to pinpoint anything that causes issues - but then try that same food a few weeks later as she may be able to tolerate it fine by then.

If the loose output continues check in with the stoma nurse. It may be that she'll recommend loperamide if necessary. But, as I said, it's still early days, I wouldn't worry too much.

For me, 3 years in, I eat everything. I just make sure I chew really well. Just can't stomach anything with artificial sweeteners in it.

Hope this is of some help but just ask away if you or your mum have any other questions.

X

I totally agree with every single words,those are the advises I was given too, now 2 years on and I eat practically everything.

I do often take loperamide though as a precaution , especially when  I know I am going to drink a glass of white wine. 

Good luck.

Bri26

Hello cjb.0809

I have a stoma following an iliostomy about 20 months ago. It does take time for everything to settle down, I kept a food diary in which I recorded everything I ate which allowed me to keep to highlight foods that caused a change in output from the stoma.  With the need to keep hydrated I am aware that if I  have a lot of liquid then the output can be quite watery.  I have found that jelly babies are good for thickening things up. Macmillan have a brilliant range of easy to read information books, when I was initially diagnosed my stoma nurse gave me a copy of Looking After Someone With Cancer and another on Understanding Rectal Cancer.  We can underestimate how long our bodies take to adjust after major surgery, everyone is individual and recovery is a personal journey.  It sounds to me that you are doing the right things for your mother.

I hope everything settles down soon. 

Hello, my stoma nurse advised me to eat jelly babies and similar soft sweets with gelatine, as they solidify the output. It helped.

2 years on, luckily no more stoma, I still eat them as prevention.

You are doing well with your mum, unfortunately, we do intend to lose weight with a stoma, as long as your mum carries on eating several small meals a day... However, should her weight lost be really severe, then just a visit to the consultant to reassure yourself.

It does get better.

Best wishes to both of you.

Thank you all for your replies and really helpful advice.

We are keeping a food diary so we can pinpoint any triggers, the main thing we’ve noticed is tea seems to make mum feel bloated and the loose output tends to be happening early hours in the morning so she’s been having a couple of rich tea before bed which seems to improve it.

We were told by the stoma nurse it can be loose in the morning but if it’s the same by afternoon to take 2x loperamide so we’ve been using that as a guide.

In terms of weight loss, what would you say is excessive? 
Day before surgery (2.5 weeks ago) my mum weighed 71.6kg and today she is 67.3. We are trying all we can to put weight on, she’s eating small meals often, snacking throughout the day and I’m adding butter/cream etc into meals but the weight keeps coming off. 
Thanks in advance x

I was 63kg before the surgery, then went down to 57kg. I believe that although the meals are small and frequent, our body is used to more consistent meals and I do remember that I had to really force myself, I had no appetite whatsoever.. The nurse use to tell me eat anything fatening which temps you.

As I said loperamide was and is still my saviour. The nurse, at the time, told me to take 2 in the morning and 2 at night. I have reduced the number now that I don't have the stoma, but still take them as I have LARS, Low Anterior Ressection Syndrome which is a consequence of the removal of the ileostomy bag. Before the ileostomy bag, I  had a colostomy bag for over a year and was told it might be for life, but luckily the colon seemed to heal well this time and they removed the ileostomy bag. Unfortunately, the LARS is something I was not warned about, another problem for life.

  Sorry for all the details, we are all so different. Like your mum, I lost weight very quickly, I was avoiding fibres and ate as much carbohydrate as I could, on the nurse's advice, as the output was too liquidy giving me lots of problems too.

I don't know how to give you my phone number privately. But I would be happy to chat on whatsp , if you wish it. I had a lot of support on this group when I was going through the worst and I am happy to give it back xx