Eratic stoma: Hi. I am new to this group... - Living with a Stoma

Living with a Stoma

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Eratic stoma

relieforme profile image
26 Replies

Hi. I am new to this group. I have had a stoma since last November, but still having problems with the output being eratic, and having to take Imodium to calm it down. Not sure what to eat, in case it causes problems

26 Replies
Dogbot profile image
Dogbot

Hi I have had a ileostomy bag for over a year and it still sometimes watery and other times it’s more solid and I have found different foods do it but the more I have looked into it it differs from person to person, funny but for me it’s a curry I’m thinking it’s maybe the rice and Nan bread but don’t be frightened to try different things good luck 🤞 👍.Stay Safe All

Dogbot 🐶🌈

relieforme profile image
relieforme in reply to Dogbot

Hi. Thanks. Yes, Any spicy foods I try to avoid, but I can't put it down to other foods. Trouble is I get confused as to what to eat. It does differ from person to person I am sure. I get worried about going out too. Take care

Paulpp profile image
Paulpp

Good morning.

Everyone is different. What works for some will not work for others. Sounds like a cliche but it's true.

I had a high output stoma and even the maximum dose of 48 Loperamide(Imodium) a day didn't help. The dietitian in hospital suggested marsh mellows , jelly babies etc. No effect. But I was a bit of a unique case. So they told me.

Do you keep a food diary. Record what you eat and what affect it has on your output. You might be able to build a list of things to eat and to keep clear of. Trying to remember what food does what can sometimes get confusing. So writing it down is better for reference.

You might then be able to pinpoint what makes your output erratic.

Even include things like your physical activities or what time you went to bed and got up etc.

Just to see if you can see any pattern that might be causing it.

I assume you are also keeping your fluid intake up as lots of loose output can lead to dehydration, as you probably know. But sometimes it might catch up with you if you are not careful.

Even though it's almost a year since you had your operation your body is still adjusting and you are too, so don't become frustrated. You will eventually find a diet that you are able to maintain.

Although if you are concerned it won't do any harm to talk to your GP or try to get advice from a hospital nutritionalist or even a stoma nurse.

Sorry if all this sounds obvious. I am only trying to help

relieforme profile image
relieforme in reply to Paulpp

Hi. I am having problems with my tablet, but will try and .answer. Thanks for replying. I do try and keep a good diary but still don't know what upsets it. 48 Tablets is is unbelievable. My stom a nurse says not to take more than two a day with a coloscopy it worries me about going out.

Paulpp profile image
Paulpp in reply to relieforme

Sorry I was not suggesting you take more Imodium, I was just explaining my situation.

Yes I understand the suggestion of potatoes, rice etc. I was told that too. But potatoes give me terrible wind now( never used to) Personally I have to avoid potatoe skins too in case they cause any blockages.

Cucumber and beetroot has a high water content too so that surly cannot help with loose output. Although not sure why a teacake did it too. Maybe it was the raisins/currents in the cake.

Too many variables and reason your output is so erratic. True GP's will not know as much as Stoma experts but you may have to go through them to get refered somewhere else.

If your stoma nurse thinks it's IBS, then bunging you in the direction of a forum is not good enough IMO. You should get treatment for it. That is where a GP may be of help.

Although please don't let that stop you from going on forums too because they do hold some nuggets of information that may help you.

Did your Stoma nurse maybe suggest some over the counter IBS medication?

Oh and try not to worry about going out. I presume you was given a little stoma (spare parts) bag.😄

As long as you go out with enough bits in case of any accidents you should be ok.

Don't worry what other people think if anything did happen.

True it might be a bit annoying but you get used to it. If it ever did happen.

My bag used to fill up like a balloon some times and initially I got a bit down. But after a while I got used to it and just became part of my life

relieforme profile image
relieforme in reply to Paulpp

Hi. Thanks. Perhaps because there is a lot of water content in beetroot and cucumber could be the problem. But then when you don't eat anything different and the output changes,it's frustrating. My stoma nurse is very good, and only made a suggestion to go on a forum, to see if anyone else were having the same problems. As to the ibs, I use to suffer from it, so she thinks it is still a problem.

Paulpp profile image
Paulpp in reply to relieforme

My apologies. I didn't meant diss your stoma nurse, I didn't realise you also suffered from IBS previously. I thought it was all new.

Wow you have really been through it. IBS then having a stoma, and now more IBS.

I suppose your IBS has been exasperated by the stoma and mixed things up to make it a bit more erratic then before.

I'm stumped. But I promise to have a look around and see if I can find some suggestions from others who might be having the same thing. I will try ..👍

relieforme profile image
relieforme in reply to Paulpp

Many thanks. Much appreciated.

Paulpp profile image
Paulpp in reply to relieforme

I can't find anything to suggest other then what has already been mentioned on here.I know it's frustrating for you and us all.

I have found a few sites with some information but it basically goes over what you already know .

There is also another forum too you might try and see if anyone there can suggest a lightbulb moment.

shieldhealthcare.com/commun...

oakmed.co.uk/help-advice/ad...

meetanostomate.org/discussi...

relieforme profile image
relieforme in reply to Paulpp

I t was meant to say I keep a food diary

Dogbot profile image
Dogbot

Hi it’s a good idea to keep a food diary but your stoma must not rule your life especially when it comes to staying in that will not do your mental health any good at all. You must get out and have some kind of exercise and life style. Two tablets a day will not help you at all I would think, you need to talk to the stoma team I generally find GPs don’t know enough about it. Good luck let us know what the stoma team says 👍. Stay Safe All Dogbot 🐶🌈

relieforme profile image
relieforme in reply to Dogbot

Hi. Yes I do agree the stoma mustn't rule my life. I do go out, but take a bag with me.I have spoken to my stoma Thank younurse and she thinks it's ibs, and to talk to a forum, which is why I have come on here.

Oldude profile image
Oldude

I have the same problem. I have found that if you eat potatoes and bagels and white bread, it helps with the output. I know nurses tell you to drink a lot of water, but that seems to cause the output to be runny. Of course if you don't have enough water in your system you can get dehydrated, so you have to be careful. Also rice is good and pasta is also good. Here's wishing you luck!

relieforme profile image
relieforme in reply to Oldude

Many thanks. Yes potatoes are suppose to help, but if I have a jacket potato with beetroot and cucumber I have problems. I am not keen on rice and pasta. I just get frustrated as to what to eat.

Oldude profile image
Oldude in reply to relieforme

Hope you can get better. Do you know that beet root has a lot of fiber. Fiber is a cause of runny stools. Salad items such as lettuce and the vegies you use in the salad can and does create gas. White bread is a big help in thickening the output. So far stoma nurses have told me to do nosoluable fiber (I can't even figure out what it is) all I know is that fiber of any kind really causes runny stools. I have also found that dairy product have the same effect. Ostomy is really a pain in the butt. I will have had mine for a year now on the 24th of this month and get really frustrated at times trying to get the right ingredients into my stomach so that I'm not awake all night doing an empty every 2 hours or so. If you figure out something that you eat and it consistently works please let me know. I get the diet right about 60% of the time and would like to get it to at least 85 or 90% of the time.

relieforme profile image
relieforme in reply to Oldude

Many thanks. No, I didn't realise beetroot has a lot of fibre, also dairy produsts. So many things that you have to think about Nosoluable is a mystery to me too. I have had mine since 16th November, and I get really frustrated too, as to what I can eat, without it causing it to upset, I will let you know if I find anything that works.

Dogbot profile image
Dogbot

I’m not a great fan of rice or pasta but you have to find recipes to make them tasty for you, I like fish and eggs so I eat kedgeree tasty and helps. Stay Safe All Dogbot 🐶🌈

relieforme profile image
relieforme in reply to Dogbot

Many thanks. Have just taken an Imodium as my output went loose.. Only thing different I have had today is a toasted tea cake

kimmo profile image
kimmo

I’ve had my stomach for over 11 years now and still experience some of the symptoms you are talking about. I suffer from an insidious auto immune disease which caused me to lose my colon and large intestine, hence the ileostomy, but it also affects lots of my body too. My teeth seems to be what it is attacking at the moment so I am somewhat limited in what I can eat now as I am experiencing far more blockages from foods I once had no problems eating 🥴. If my output is runny I often use ‘Moreform’ which are paper packages you put into your bag and they dissolve on contact thickening your output. Great if your out for dinner! I order them with my supplier as and when I need them. I learned after a couple of years that I would eat what I wanted, within reason, and record my output but it wasn’t always the same, so I gave up and just got on with it. Bananas are the only fruit I was recommended and they are the only fruit I dislike, but I tried as they’re supposed to help. It’s pretty much swings and roundabouts, but just live your life and don’t let it define you. Be ready for all eventualities as we’ve all been caught out. I was last week in The Lakes by a badly fitting new type of bag I was trying and my partner and I just laughed and discreetly walked back to the car and drove back to where were staying. It can happen to the most experienced of us so panic not and live life to the full 🥰

relieforme profile image
relieforme in reply to kimmo

Thanks for getting in touch. Sorry to hear about your health problems. But you seem to be very positive about living your life, and not letting it get you down. I have only had mine for ten months, and I do find it gets me down, and why the output can change from thick, and two hours later it fills the bag with loose output, as did this afternoon, with nothing to say why, as havnt had anything different to eat. So I took an Imodium to slow it down. I don't know anything about the Moreform you said about, sounds as though that would help if you are out. Thankfully I like Bananas!! It must be so difficult for you, if it is attacking your teeth, so causing more problems. So you have lots of problems to cope with. I get so anxious, which then affects your stoma. So you have a colostomy? Which I do. Having had an operation for bowel cancer, then four days later had to have another op as the blood wasn't getting through, so then had to have a stoma. Wish I could go back to how I was, but if I hadn't had the op, wouldn't be here now!! So we have to be thankful, and carry on!! Many thanks. All the best.

Oldude profile image
Oldude

My problem is a short bowel and so I too take Imodium, actually 8 of those 2 mg pills daily. I think that maybe off-the-wall output is kind of normal but have found some ways to keep the output on the thicker side about 75% of the time by eating a bagel for breakfast and eating white bread (at least a slice) during the day. The output usually thickens up about an hour after breakfast and providing I don't drink more than a half-gallon of liquid during the waking hours, it remains that way, for the most part. Hope this. is helpful for you and don't get discouraged, some days are like a giant diarrhea.

relieforme profile image
relieforme in reply to Oldude

Hi. Thanks for your message. I have been told not to take more than 2 Imodium a day, as I have a colostomy, and it could cause constipation. I usually have to take one if it starts to get loose, and changing the bag more often. Why it changes from thick to loose, without changing my diet, I don't know. Thanks for saying about the white bread and bagel. I have recently spoken to a dietician, who said to only have three hot drinks a day, and more water. You sound as though you drink a lot of water. Surely this could make it looser? Many thanks

Oldude profile image
Oldude in reply to relieforme

I got used to drinking a lot of water when I had ulcerative colitis and had to have a Koch's pouch. Now that I have a stoma, something has made me think to drink more liquids, seems like I'm always hungry and always thirsty and can't put on weight.

Oldude profile image
Oldude

My ileostoy was done 2 years ago this month. In all that time, I have never figured out what to eat to get to the point that the output is not watery. I too take lotrimine (8 pills daily). I have tried everything to figure out when to take the pills, since taking before meals doesn't work. Also taking them at night doesn't work. Some days, my output will be of a solid consistency until I go to bed at night. The only thing I have concluded is that it is what it is.

relieforme profile image
relieforme in reply to Oldude

Hi. Nice to hear from you. You too have problems with output. My stoma too, was nearly two years ago. I have got to the point, of not looking forward to eating, as just dont know what upsets it. I only take 2 loperamide a day, which the stoma nurse advised. I still cant seem to get to a thicker output. As you said, it is what it is.

Oldude profile image
Oldude in reply to relieforme

Good to hear from you. My main problem is that I have a short bowel, which was caused by have a previous Koch's Pouch, which unfortunately gave out after 28 years and wouldn't properly drain because of what the Doctors called "Chrones Disease". Anyway like you I really haven't found foods other than pasta and white bread that seem to make a thicker output. I can eat bread but pasta everyday is a little much especially when I prefer potatoes, beef, pork and chicken. My doctor told me to take the 8 loperamide a day, two before each meal, which doesn't work. I have tried every combination I can think of and it sometimes works by not always. Additionally, to keep from becoming dehydrated, we have to keep ourselves watered down. It is just a fighting battle. I lost 25 pounds before and after the operation and have only managed to put 5 pounds back. I wasn't very large to start with. So if you find any secrets, please let me know. I don't care about the weight, but really care about having to empty so many times. When I go to bed at night I usually have to get up anywhere from 2 to 4 times to empty. Having a stoma is not really a fun thing! Good luck to you.

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