Stoma Massive output. HELP

Hi I have had my ileostomy 26/01/2012 my output is massive 16 times a day.
Loads of output is liquid and night time 5/6 times at night.
I have tried Imodium syrup...
Codeine 3x2 30mg tablets a day.
3 sachets Questran a day
Omeprazole 2x20mg a day
Marshmellows, bananas, jelly babies, rice, bread no salt ....not drinking much fluid but I am so thirsty all the time...
I have a little bit of solid output but mainly it’s all water and frequent.

Please help it is so bad I am shattered the doctors have put me on anti-depressants as I have had a go at self-harm as it’s getting me down and affecting my family...
:sign0085:

Hi DAVl

I will move your post to the stoma forum and you will likely receive the responses you need there.

Dusty. xxx

You poor dear! Hang in there. I don't know anything about stomas, but I read your post and wanted to give you some encouragement. Things will get better, and one day you will be helping someone else who's going through something similar.

Hi Davi! I see we both had surgery on 1/26! Surgery buddies haha!

When you say you are having output 16 times a day... do you mean that's how often it comes out, or that's how often you are emptying your bag?

I am emptying the bag 16 times a day.

My doctor has said drink 1 and half lt of fluod a day max.
I have read on the forum to drink more,so am going to try it .

I'm so sorry you're not doing well Davi.
It's a real struggle getting used to a Stoma - especially when things don't go ok.
Mines only new too - so I don't know what to suggest.
With that amount of output - you sound like you might be dehydrated.
I've also found pasta is the only thing that thickens up my output - so maybe have a crack at that.
I hope you start feeling better soon. I really empathize.

Been drinking loads of fluid and ready salted crisps.....is helping a bit.....onwards and up..lol

Hi Davi,

The output is much more in the early days - I only thought this morning, having been in bed 10 hours, that I wouldn't have believed it possible last year. I had my ileostomy 10 months ago. When you say you are drinking, is it water? You really need to drink fluid that will maintain your minerals, electrolytes such as the sports drinks. Too much water dilutes these minerals - which is why you can feel thirsty.

I find a good bowl of thick porridge thickens the output. I also remember my output being alot - I had to measure it for a while. It did settle down eventually. Now it is great (most of the time).

It is still early days for you so yes, onwards and upwards.

Love Kaz xxx

Thx Kaz of to get lucozzzzzade....

Hi Davi,

Lucozade Sport remember. Just realised I am not far from you (nearer the Mersey lol)

The small intestine starts to adapt to absorb the water that the colon used to absorb -clever really innit.

Keep your head up

Kaz xxx

Hi Davi....you've received some good advice so far. Unbelievably, the more dyhrated you are, the more diarrea you get, which leads to further dydration. Your Dr is certainly WRONG to say you shouldnt be drinking much fluid. (I can only assume this is a GP, not a GI?)

I generally tend to drink about 4 glasses of water a day, and have 1 or 2 bottles of Powerade a day. For electrolytes, etc. As you have an ileo, your output will always be more liquid. Also, those with ileo's dehydrate much faster than those of us with colostomies.

Yes, a new stoma will produce alot more output, but it will in time regulate. Meanwhile, try introducing a wee bit of fiber, not much. For instance, baked potatoe, oatmeal, legumes (in a small amount). And talk to your stoma nurse and IBD nurse, they are a great resource!

When are you due for a follow up appointment by the way?

Welcome to our little subforum. I hope you have a chance to look around all the threads in here and get a giggle, and lotsa info too!

Hi DAVI
I got my Stoma about 5 weeks ago and i just got out of hospital again due to dehydration. When i left after my Op i was told nothing about needing extra salt and electrolytes. I could have avoided that extra hospital stay if someone bothered to tell me the right thing to do. Anyway i was introduced to St Marks soultion and that has saved me. Apart from tasting a little salty you can counteract that with a bit of cordial in the mix. You can google the ingredients quite easily and buy it all from Sainsburys. Its certainly helped me and i'm trying to get into a routine of that plus a few small meals of binding food which has a thick slow output rate which seems to be working. Goodluck mate.

16 times a day is a lot, how much are you emptying out on each occasion?

The first and most important piece of advice is never to drink "plain" water (as others have noted). I was advised to drink 2 litres of liquid a day and for me that was 2 500ml bottles of orange Lucozade Sport and several cups of tea. Lucozade Sport is currently on special offer at Tesco, you can get 4 bottles for £1.84. If you do not like Lucozade Sport, I have found Ribena with about a teaspoon of salt in it to be equally effective.

Next I would advise you not to drink liquid with your meals. Get in the habit or drinking fluid between meals. Try to leave at least a 30 minute gap between eating and drinking. The only exception to that rule would be to eat salty crisps (like Pringles) when you drink Lucozade Sport.

If you are going to take Loperamide, again take it 30 minutes before you are due to eat a meal so it can start to slow things down before you fill up. I tend to take a Loperamide as soon as I wake up in the morning and wash it down with a bottle of Lucozade Sport.

One last thing you could try would be to take a vitamin D tablet every day. Anecdotally, I have found taking a vitamin D tablet with my Loperamide improves its effectiveness. I have not seen any scientific evidence to support this, but from personal experience it seems to work. This has been great for me since returning to work as I have found a good routine and have a consistent, think output.

In the end though, a lot of this is trial and error. At least with a stoma, if a food or drink is going to be problematic for you, you will find out quickly! Good luck.

I have a temporary Iliostomy. They gave me some kind of bag that must have been for kids in the hospital. I blew that one off the first day.

I got a much bigger industrial size bag, but I still empty it many times a day. Usually only once at night, but I quit eating a few hours before bed time.

I do take Imodium on occasion to slow things down a bit.

Caffeine will speed things up even more. Avoid it if you can.

Good Luck

Dan

You can drink a ton and it will not increase your stoma output - as long as you are drinking water - if any doctor tells you differently he better go back to medical school.

You probably need more sodium if you are losing that much fluid. possibly potassium and magnesium too, have them check your electrolyte levels.

You can always try amitryptilene - at a low dose like 10mg or 25mg, it should stop the d.

hopeful said:

You can drink a ton and it will not increase your stoma output - as long as you are drinking water - if any doctor tells you differently he better go back to medical school.

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Drinking water will increase your stoma output as it will not get absorbed in your small intestine unless it contains some salt. This is why sports drinks like Lucozade are recommended.

I drink six liters of water a day, and it gets absorbed. It does not increase stoma output. Water should get absorbed pretty high up in the duodenum.

I do think that the medical community can give us very conflicting advice for a new ileostomy and a colostomy. New ostomies in general will produce a great deal more output until they settle down. Ileostomies can leave you dehydrated at a stunning rate of speed, especially when they are new.

Stoma nurses in general are actually better advisors than Dr's in many cases when it comes to these things. To be advised to NOT drink water is amazing. You will need water, you will need potassium, magnesium, salt and electrolites. In spades. Will your output increase, probably. Your output will be high regardless. I have a colostomy and my output took MONTHS to stabilize. An Ileo will be worse. The output will stabilize. I promise that. But you must stay hydrated, and that is extremely important. Dehydration will land you in hospital in a hurry.

If you had constant diarrea, do you think it would be advisable to not drink water? No, probably not. A new ostomy is producing alot of diarrea. Its logic to replace fluids lost. Stoma nurses HATE it when we dont drink enough fluids and end up in the ER. I personally dont like the ER either!

If you want good advice on how to deal with your ostomy, the following is the order of best to worst sources:

1. Patients
2. Stoma nurses
3. Doctors

I have had some interesting metabolic changes since my ileostomy and I have seen plenty of "experts". No one has a clue of what an ileostomy does to the metabolism.

A doctor even told me to drink sparkling water (soda water) to slow down output! I stupidly listened...

I dont currently have an ileo but Questran makes me go even more so might be worth skipping it for a day or two ?

Not to be contrary, but I just wanted to point out that the majority of water is absorbed by the large intestine, not the duodenum. Which is why us ileostomates have liquid to mushy stool and also a much higher volume as we don't have use of the large intestine to do that job for us. Conversely those with colostomies (when well) generally have normal and we'll formed stools. Just as an FYI the the primary function of the duodenum is enzymatic catabolism of food and regulation of stomach emptying. Just wanted to clear that up that bit of misinformation, please don't take offense =). Also back to the original question. I don't know if this would be an appropriate course of action but I have to take zofran (anti-nauseant) along with my chemo, and it thickens up my output A LOT! It does cause drowsiness for the first few hours, but is good for 12 hrs. Maybe you could check with your doctor about it, just a thought. All the best,

~Kat~

90% or more of water is absorbed in the SMALL intestine. Water is absorbed by passive diffusion throughout the small intestine. That is what the medical textbooks state.

However, the intestines also produce digestive juices, bile is produced etc, all that liquid being produced gets re-absorbed in the colon. So people without a colon will have output that is more liquid.

If you placed a patient with an ileostomy on total intravenous (parenteral) nutrition, without drinking by mouth, he/she would still produce liquid output.

Neko76 said:

I don't know if this would be an appropriate course of action but I have to take zofran (anti-nauseant) along with my chemo, and it thickens up my output A LOT! It does cause drowsiness for the first few hours, but is good for 12 hrs. Maybe you could check with your doctor about it, just a thought. All the best,

~Kat~

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The Zofran is a 5-HT3 receptor antagonist, and it slows down intestinal motility. This will naturally lead to increased absorption. Thanks for sharing this. I think its not a cheap medication.

It sounds as if we're all dealing with simlar problems but some of you are definately coping better than me! I have short bowel syndrome which means that I have to 'graze' all during the day...unfortunalety it isn't keeping the weight down as my diet is 90% carbohydrates. I do hate the feeling of the bag filling and recently I've been having bad pains in my tummy, which is new. I've been told to take ST mark's solution but it's gross! Can anyone suggest anything other than Lucozade?
Thanks for bearing with me whist I have a moan...isn't Crohns horrible???:boring:

Paddy, I cant stand lucozade, but I can tolerate and even like Powerade.

I hope that things settle down for you.

I've had this ileostomy six months and still get plenty of output, and was averaging about 15 empties per day. It now depends on when I eat, what I eat, and how often. Am trying more protein and rice or potatoes. Craving salt so that tells me I need more water. I'm not normally thirsty so some days I need to remind myself to drink more. Like someone else said, try to leave the heavy drinking between meals, and try not to drink too much during the meal. It can be difficult, or when there is wine or beer around you should just sip if at all.

My thanks to all who have given their input ...I've discovered a product( yes it's junk food) called Mug Shot which is just flavoured pasta or noodles. It's easy to make and fills a gap and doesn't cause me flying to the loo within 20 minutes.
I'd been having to empty my bag so frequently that I've become agrophobic and frightened to eat at all. A pack of mug shot( my fave is Tomato and herbs) gives me about an hour and a half to walk the dogs and pick up necessities from the local Spar...so it's enabling me to go out as well.
I hope this helps someone else, Crohns is an awful disease/syndrome/condition and is so debilitating! It's a major breakthrough when you find something that helps!!!!

PS you generally find it on the Soup shelves in supermarkets wth cuppa soups x

Hi, I had a temporary ileostomy for about three months with high output. I was always thirsty and urine output was low. Had to get intravenous infusions three times a week and drank sports drinks mostly and also made all my tea with salt and sugar water. It took a very long time for it to slow down but was never great. I found the doctors instructions to drink more made things worse - more fluid in just made more fluid out and caused more potassium and magnesium deficiency. I don't feel that eating , bananas and starchy foods helped that much either but it is worthwhile trying.

If I was to change anything, I would not touch coffee at all, even decaf, and no dairy.

Really, it is just going to take time for things to settle down. It has taken me over a year to get things manageable. I know how hard it is when you can never rest and have to keep emptying the bag and have to change it very often. Stay strong it will get better.

Best wishes.

2

DAVI said:

Hi I have had my ileostomy 26/01/2012 my output is massive 16 times a day.
Loads of output is liquid and night time 5/6 times at night.
I have tried Imodium syrup...
Codeine 3x2 30mg tablets a day.
3 sachets Questran a day
Omeprazole 2x20mg a day
Marshmellows, bananas, jelly babies, rice, bread no salt ....not drinking much fluid but I am so thirsty all the time...
I have a little bit of solid output but mainly it’s all water and frequent.

Please help it is so bad I am shattered the doctors have put me on anti-depressants as I have had a go at self-harm as it’s getting me down and affecting my family...
:sign0085:

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Hi Davi, just read your post, sounds like you're having a terrible time. Thought I could add a few points.

Firstly to the physiology of your small bowel:

You have a short length (25 to 30 cm) of duodenum (1st part of your small bowel) which is important for iron, plus other, absorption.

Following this is you jejunum (2nd part of small bowel) usually measures about 2 to 3 m in length. This bit is key, the jejunum tends to be quite "leaky", and if the contents of the bowel going through the jejunum have a concentration less than 90mmol/L (ie. if what you eat isn't very salty) then your jejunum will end up secreting fluid and more salt into your bowel to get the concentration to around 90mmol/L ( so if you drink a litre of water, you may have 2 L enter your ileum - fine if your ileum works and you have a colon).

Next is your ileum (3rd part of your small bowel) usually a little longer than the jejunum. Tends to absorb a lot of fluid, also absorbs bile salts, so if you've lost some ileum or it isn't working very well due to Crohns in your ileum, then you will have trouble absorbing all the fluid coming from your jejunum, which sounds like the issue that you're having. So the length of ileum that has been resected, and more importantly, the length of ileum you have remaining becomes very important.

Now, it's not just what you eat and drink that enters your bowel. You also have around 0.5 to 1 L of saliva, 2 L of gastric juice, and 1.5 to 2 L of bile/pancreatic juice, all but 100ml is usually absorbed in a normally functioning small and large bowel, so you can see how easy it is to become dehydrated with large stoma losses, and the difficulty of keeping up with those losses when drinking most things will significantly increase your output.

The last thing in regards to physiology would be the loss of the ileocaecal valve with an ileostomy, this valve serves as an "ileal brake" and only let's small amounts of fluid into the large bowel at a time to help with absorption, so you no longer have this ability.

So what can you do about it.

1. Avoid eating and drinking at the same time, food travels slower through the bowel than liquid (slower bowel absorbs more), and if you drink, you'll wash everything through to your stoma a lot faster. Drink perhaps an hour or so after.

2. Ensure you add LOTS of salt, remember that key number of 90mmol/L, which just happens to be the concentration for in St Marks solution. Also dry food is better. St Marks should be the drink of choice when your stoma output is high, ensure it is cold to help palatability, plus a little cordial if required. You can also freeze it and use it as an ice to eat to help, best way is to gradually sip it through the day rather that large volumes at a few sittings. Google St Marks for the recipe.

3. Omeprazole which you are on decreases gastric secretions, so keep going with that one.

4. I'd stop the questran, can cause increased fat loss in the stool, and it's main role is to stop the diarrhoea associated with bile salts entering your colon, you don't have anything entering your colon.

5. Imodium and codeine are used to slow down your bowel and give more time for absorption. If you see any tablets in your stoma bag, I'd crush the tablets before taking them, and avoid extended release medications, they won't be absorbed before they get to the stoma bag. You need big doses of these medications, and take them before meals, because that is the key time you want to slow the bowel transit.

I would suggest Imodium 4mg upto 4 times per day before meals, with Codeine 60mg upto four times per day before meals. Can also add lomotil if required.

Also, if desperate, ask your doctor for octreotide, really good at shutting off gut secretions. And as a last resort, you may need IV fluids at home to properly hydrate, especially during high stoma output periods.

6. Lastly, ensure your diarrhoea isn't driven by active Crohns which will need addressing (ie. faecal calprotectin), or infection in the small bowel (ie. breath test for SBBO), or excessive fat in the stool (ie. faecal fat).

Best wishes.

Hi paddy
I too have a new stoma. Only 3 weeks old. In that time I have already been back to hospital with dehydration. I made the mistake of drinking water. The more I drank the more the D, which made me drink more. Learnt my lesson the hard way. I have a colostomy, but acts more as an iliostomy due to all the previous resections and short bowel syndrome. Pre stoma surgery I couldn't tolerate plain water so I don't know why I thought I could post surgery. Food wise I have found pasta works to thicken output, marshmallows notsilltrying to sort through other foods. I also take loperamide and codeine to slow down intestinal function.

Good luck, I hope you manage to get it under control. Mine is behaving, but like all new babies there are different stages of behavior. Just hoping I got a good baby this time

Hang in there's
Janette

Hi Janette, thanks for taking the time to reply ( as well as all the other folks who've done research). You and I seem to be in the same boat...I have an ileostomy ona colostoy site and find it difficult to live with. Like you I've tried many 'thickeners' but I now have come to the conclusion that it's just something I have to live with. I take the same meds as you as well as some for depression. This site is one I return to when I feel like the medical profession can't help me.
I've been told definately no more surgery due to adhesions and my colon has attached itself to the inside of my stomach skin.I'd be interested to hear about your coping mechanisms.:sign0085:

Hi paddy
How are you getting along. My output is still erratic, somedays great and I think wow this is great, other times especially when people visit I get loads of output and have to keep making excuses to run off and empty.

I have a powerade type sports drink with me at all times and I just sip on it, and I am avoiding plain water. I add salt to most meals, and have been trying not to leave the house until I think my intestine must be close to empty. I know it will get easier as I get more used to it, and I am NOT going to surrender to this horrid disease. I am taking the life term rather than the death sentence approach, and I must admit that I am not racing off to the toilet every half hour in complete desperation and scared to death I won't make it anymore. The amount of loo roll we use has dramatically reduced. Trying really hard to keep a positive attitude and look for things that are better since the op. must also admit I'm pleased to get rid of my, once described by my Gastro " extremely unique and angry looking butt" no more abscesses popping and fistulas leaking.

Let me know how you are going. PM me anytime if you wish.
Good luck
Janette

Oh bugger
Just wrote a huge reply and computer bandits took it away.

How are you going Paddy. Have been thinking about you and hoping your 'journey' is getting easier. I now make sure I have 1 sports drink a day, I do not touch plain water and I add salt to my food. I sip the drink all day and always make sure I have it with me. My output is still very random. Great somedays and others just keeps coming.

I am trying to be very positive and keep reminding myself of what has changed for the better so far. Sometimes it is very difficult to find a positive spin but I will not let this beat me, nor will I let it define me. I am the same person I was before my stoma and that is who I wish to remain and grow from. Miss piggy, my stoma, is just a new rubbish chute as the old one gt worm out, and if any of my friends have a problem with it them they really aren't the people I thought they were. On that note I am astonished by the number of people, who only know I went away for surgery, have come forward to help out my husband and kids and do things for us. It has been really lovely. There are some wonderful people in this world, sometimes we forget about humanity but t is truely lovely when you wee it at work.

Take care and feel free to PM me anytime.

Keep strong
Jaette

Jaano711; your message reaches me on a bad day. For the last 24 hours I have been running to empty my pouch roughly every 20 minutes. Skin very sore and profound headache...will be signing off after this! Thanks for the advice about powerade I'll give it a try. My diet is mostly pasta based and I add cheese and salt for added flavour. Sorry, this isn't the usual me. I'll respond again soon Paddy x

Hi paddy
I hope you are feeling a bit better. I really think you may be dehydrated. Not only do I get very dry and headachy I also get depressed and teary when I am dehydrated. If I start feeling sad for no apparent reason I reach for a powerade and take some loperamide (gastro stop or immodium are brand names here) and try and get my fluids up. As I have said before water absolutely kills me just pours out my stoma as quick as I drink it.

You sound like you may need a visit to the stoma nurse to see if she's has any suggestions for you sore skin. I know mine is really sore at the moment and as I am off to the big smoke today for a specialist visit and I have arranged to see the stoma nurse to see what she can suggest. I have been told sudocream is good as a barrier but need to check this.

I will let you know how I get on.
Chin up. As I've been reminded by my husband. It may feel abnormal but it is now my new normal and the stoma does not re define me I'm still the same me but with an improved waste disposal system.

Sending you good vibes.
Janette xx

Hi Jaano, thanks for your response. I'll get some Powerade today and give it a whirl...your husband sounds very profound! Aren't we lucky to have supportive fellas? I don't know how I would have managed when I first came home from hospital. The damage to the skin were like 3rd drgree burns, even the stoma nurse was surprised...but Cliff, my husband just got on with helping me get the seals right and was there with hugs and sympathy.A star...
The bad times pass and we get on , but I'm not at the 'getting on ' bit yet but do REALLY appreciate your posts!:kiss:

Hi paddy
I have had a crap week this week. Went back and saw the surgeon, she managed to poke a hole through the bottom of my midline wound, so now the hole thing is held together by about 5cm of tissue in te middle. She also had a poke at the perineal wound ( my butt), it was then packed. When I got the 4 hours home from the surgeons, I went to have the wound redressed and pus just poured out. So now it is really sore and slowly opening up further. At least before it didn't hurt to sit around, now it bloody kills.

Also had a disaster with the stoma nurse and a new seal which made my skin burn and bleed, and made my bag leak all over the lovely white cotton sheets at the hotel we overnighted in. Me thinks we won't be staying there again!

Hope Powerade is helping, when your up to it let me know how your getting on. The only reason I am surviving at the moment is that I survived and I get to see my husband and kids smiling faces everyday. On top of that I will not let this horrid disease take me hostage and prevent me from doing things I want to. Yes at the moment iris slowing me down a bit but I will be stronger and better than ever when I get past the hiccups.

Hang in there
Janette

Wow! Poor you! I don't think I'd like her to be my specialist! Can you get one of those rubber ring thing things to sit on to help getting comfy? I'm keeping well away from any medics unless I absolutely have to. The Health Service here is free but so understaffed and under pressure that a stay in hospital is pretty unpleasant. I have to give in from time to time as I have such a narrow ileum/colon that I get blockages. I've had such a massive amount of surgery on my abdomen that I'm full of adhesions and the last time they operated, they said they wouldn't be able to do any more unless it was life threatening. I'm of the opinion ( and I know not everyone agrees with me) that if things are that bad, just make me comfortable...
Anyway , back to you, are you able to sleep at all? Do you wake refreshed or exhausted?Your story sounds horrendous and yet you are so positive which I admire so much.
I have a cousin In Australia whom I've never met, 'tho' we email and have the odd Skype call. He designs and builds houses. He built a copy of Gracelands( Elvis' house) for his parents in law. It's fabulous...and he's just finished building a lakeside mansion worth over a million and a half Aus dollars.I'm not sure where it is,( perhaps New south Wales?.)..anyway it's beside the biggest inland lake in Oz.You probably know the name of it but I'm hopeless. As I get older my memory goes on short vacations leaving me looking like a fool!
Hoping you're feeling better very soon and appreciating your correspondence:hug:

Sounds like it is probably Lake Macquarrie. It is in NSW. My parents liveby the lake, and yes it is a massive lake if I remember correctly it is over 200km long.

don't think it's age that makes our memory wander, I think it's all the extra 'stuff' we have to take in over the years. A bit like a bucket, if we overfill it something has to come out hence we sometimes forget the things that aren't important for everyday life!

You sound like your doing ok. Hope your enjoying those grand kids. I have 3 children a 7yo boy, and 11yo pigeon pair twins. My parents are Over here with us at the moment due to my 'issues' and inability to do much at all. I just wish my dad would stop being so hard on my kids and just enjoy them and leave the parenting up to my husband and I. Oh well his loss I suppose.
:rosette2:

Catch you soon
Janette

You're right! it is Lake Macquarrie! My cousin's name is Mitchell Medaris Adams in case your parents have heard of him...
I sense some tension regarding your Dad...is he the type that believes everyone must behave themselves at all times? Was he in the forces?
You don't sound great and I feel a deep sympathy for you.Parents are a double edged sword I always think. You love them with all your heart but at times you wish that they'd let you get on with things your own way...I was an army brat..sent to boarding school from the age of 3 years old and finally left when I was 17. Mum had extreme Bipolar Depression( used to be called Manic Depression) which meant that she was totally unfit to look after her family. With Dad being in the army, he was sometimes posted abroad but Mum never went with him because she could 'blow up' at any time! That would not have gone down well as Dad was a senior officer...anyway, the point of all this rambling is that I didn't have a normal childhood and because of that had no template to follow when I had my own kids...2 girls Emma and Madeleine( Maddy).Lots of problems as my ( then ) husband felt I was too strict and eventually we divorced. The girls did what most kids do in that situation, played us off aginst each other except that he was(is) an alchoholic and very laid back about parenting. The girls had a ball when they were with him! Now I have 2 grandchildren;Luke ( whom Maddy had when she was 17)now 21, and Hollie,15 and boy, is she a force to be reckoned with!!!!I'd thrash her but you can't do that any more...lol;I also have a great grandaughter 'cooking'; due any day now. Mum( Vicky) is a sweetheart but only 18. I just hope I'll get to see her and the baby soon. Travelling is a problem. They all live in SE England and I live in Northern Ireland. A short flight, but as you've discribed, lots of preparation involved...empty tummy etc.
I hope this hasn't bored you rigid and you don't feel I'm unloading on you...could we email direct?I'm padcliff2001@msn.com if you feel you'd like to keep this more personal.
I do sense alittle tension in your mail and wish you some soothing 'time out' wherever you feel comfortable.Love to you and looking forward to hearing from you again soon.
Paddy xx

This is me too!

Hi Maria,
The woes of the Stoma. I am only getting to know mine, it is highly unpredictable, I still feel like I need to run to the loo, they say the phantom bum feelings will go away eventually. I am just struggling with my sewn up bits not healing. First the abdominal wound opened and then my surgeon stuck a swab in my barbie butt and made a hole. I wish she would make up her mind. First she takes my bum hole and then she pokes a drainage hole in where she sewed it up. So now I have 2 open wounds that are healing by 2nd intention. But seem to be on the mend. Just over daily hospital visits for packing and dressings.

Let us know how you are going Maria.
Janette

Hello
New to the forum and have been reading this thread. I've had my iliostomy for 4 months now and it to is very liquidy but that I was told would be normal because of where its located.
I find when its thick output my stoma stings and hurts really bad. Is that because I've eaten something wrong?
To everyone in the stoma sub forum, your all so inspirational. Glad I found you

Aww...sometimes certain things just disagree with us SusanB. Not that you've done anything 'wrong'. We are all different. I know Misty Eyed can eat nuts, me...I run screaming from the room when I see them!

Your ileo is still fairly new and you need to just keep a diary of what you're eating that causes you issues. We all have to learn the hard way unfortunately. Having an ileo is gonna give you more liquid stools for sure, having a harder stool is very strange with an ileo..was it steak by any chance? (yum!)

Hi, I have loop ileostomy and had similar problem, but it seems it is solved now.
I just discovered that when I drink warm drinks it goes through my digestive system much slower!
I am going to stop drinking cold juices, I was drinking so far, which was going through my body with unbelievable speed, dehydrating me in seconds and flushing out minerals on their way. Maybe I try juices but warmed up to usual tea temperature.

I hope it helps!
Lukasz

Welcome to the forum, jentyk/Lukasz!

Welcome Jentyk, thats interesting about the warm drinks, I think I'll test out your theory. maybe cold drinks irritate the gut more? Or do you tend to have cold drinks with food and warm drinks at other times? I'm hoping you are right cos I love my cups of tea but everyone keeps telling me they are causing my high output.

For anyone else dealing with high output, I find tomato juice good for replenishing fluids. You can add extra salt and/or worcestershire sauce (or even vodka ) without having that awful sweet and salty flavour we are meant to drink.

The recipe my gastro gave me for ideal fluid absorption is:
I litre of water
8 teaspoons of sugar
1 teaspoon salt
juice of lemon or lime or other citrus fruit.

Personally I just put up with the high output (mine is 2-3litres a day) and keep an eye on my electrolytes i.e. I add salt to everything I can, I take calcium and vit d supplements every day and add a potassium supplement if I'm getting crampy or lightheaded. I've also just bought a magnesium supplement that is magnesium citrate which is apparently better absorbed than regular magnesium supplements.

Hope this helps someone (anyone)

Oh yes, and for thickening output, apart from loperamide and the other suggestions on here, any soluble fibre will help. Google soluble fibre and see what takes your fancy keeping in mind too fibrous foods could cause a blockage. Metamucil or Benefibre are made from soluble fibre so are very good for thickening output. Seems odd to take something that softens the stool to thicken it but they work by absorbing liquid so thickening the output up. Rice crackers are also good for me and porridge, rice, pasta etc that have already been mentioned in this thread.

The other thing I found that helped slow my gut down was amitriptyline. i only take it at night as it makes you sleepy but I haven't had a night leak since starting it although I do as usual have to empty at least once during the night. But better than the leaks and 2 emptyings I was having before.

Paddy and SusanB how are you both getting on now?

:heart: anna

... and one more thing I would like to share with you guys, have you tried SCD diet? Apparently it can cure some cases of intestinal diseases. It did not worked so well for me, as you already know, but it can extend period of time we can live meds free, which is great help, taking under consideration carnage they causes to our bodies.
Especially interesting variation of that diet you can find on this website scdlifestyle_com

We actually have a subforum here dedicated to that:
http://www.crohnsforum.com/forumdisplay.php?f=288

Its the diet subforum.

Hi Anna and all those who are contributing to this thread...hope you're all feeling ok. Horrible time this week and I discovered what looked like long tubes in my D when I emptied my bag last night. Tummy sore and achy and SOOO tired. We've 2 dogs, a whippet and a Patterdale and I try to get out with them for half an hour every day. This week hasn't been possible every day as I'm so knackered!Big guilt feelings as Buddy ( the Patterdale) looks at me with such pleading...he has so much energy, he just runs, constantly. Loves chasing squirrels and I'm terrified he'll catch one as they can be so vicious.
I hope Anna that all is getting better with you and that you're ggetting used to coping. You sound so organised when you write! Are your folks still with you? I'll stop now and wish you all love and as much peace as your conditions allow...I was saying to my husband last night, I can't remember the last time we got to watch a TV programme without having to pause for me to visit the loo!!!:ybatty:

Hi Paddy, sorry to hear you are having a bad week. Aches and pains I can relate to and pleading doggies eyes, its impossible to refuse sometimes isn't it.
I am getting better at coping, touchwood, I haven't had a leak for a couple of weeks and even got 2 days out of yesterdays bag!
Funny you should mention about emptying the bag so frequently, I was just saying on another thread abotu how we went to a soccer game today and I had to empty the bag 5 times during the 90 minute game. Spent more time in the loo than watching the game. Fortunately it was a nice clean loo.
I live with my husband and twins who are 21 although they spend half their time with boyfriends and girlfriends so its often just me and my husband. And our dog, Cookie and two cats (who only appear at dinner time!)

Love the little pooch in your picture...what breed is he/she?
I had a massive leak on my way out to walk the dogs this week and it's knocked my confidence for six! So embarrassing but got home before too much damage was done...no walk for the dawgs though. I couldn't face going out again. Here in the UK we're having another winter; rain and winds at the moment,soon to be snow and frost and easterly winds. GREAT!
Mother's day tomorrow and no mums to send cards and pressies to. All these little things add up, don't they, when you're not feeling great. Have a good weekend and thank you for your kind thoughts:hug:

Paddy Holmes said:

I had a massive leak on my way out to walk the dogs this week and it's knocked my confidence for six! So embarrassing but got home before too much damage was done...

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Hi Paddy, I also have big problems with leakages now. Have you tried things like mouldable rings, flange extenders and experimented with different types of bags? I know that I am talking about obvious solutions, but thanks to some small improvements I managed to reduce number of leakages significantly.

Paddy, my dog is a maltese cross shitzu. Best dog I've ever had. I've always had big dogs in the past, shepherds cross labs but we wanted one that didn't shed hair and didn't need a lot of exercise since I can't get out much. He has been perfect. No yapping and the sweetest temperament. Even our cats love him!

Re leaks - I haven't had one for nearly two weeks, but I did have one at the dog park just before that. i was there with a friend and had to use the dog blanket in her car to sit on for the drive home! Not a nice experience but we had a good laugh about it.
One of the reasons I was getting so many leaks was that I was cutting the hole in the flange so that it fit snugly around my stoma; when I enlarged it just slightly i stopped having leaks. Could be worth you trying - just make sure you put paste around the edge of the hole to protect the skin. Or like Jentyk suggests, maybe try some different bags again. I know you've had yours for a while now but maybe there is something that would work better. Do the companies in the UK send out samples?

On a sticky at the top of this subforum are the UK manufactures numbers. They happily send out samples Anna.

I think I know the reason for my leaks( not leaks so much as waterfalls). My bowel works so suddenly that the weight of the D in the bag can sometimes loosen the bottom part. It hasn't happened too often, but it's so sudden and without warning that it makes me terrified to go out. I fast until I'm home and then I'm ok...we had a downstairs loo built and it's been one of the best things ( for me ) that we've ever done. Thank you to Cliff my lovely husband.

Hmmm. I'm just thinking that we need to get you into something that gives you the confidence to go out and eat while you are out too. Maybe a different brand would adhere to your skin more? The weight of the output shouldn't make the bag come unstuck unless you are leaking around the hole and so the output slowly works its way down. Is this what happens or does it just come off? What brand do you use? Do you use barrier wipes and/or paste? Do you put anything else on your skin?

Hi folks! Sorry I've not been around much lately.

Paddy, have you tried something like the Coloplast Brava elastic barrier strips? They would give you extra security.

yes I've tried some of the sticky extensions but to be honest, I think it's the sudden weight of the full bag that does it.It's totally amazing, I can be fine, not anticipating anything then suddenly, the bag is full! No time to anticipate. My diet is mostly carbs with tinned and fresh fish occassionally, cheese, pasta, rice and eggs. What harm could come from that? You'd think?
Anyway I thank you for your concern and time taken for the message. Take care, we all have something to contribute here, so thanks for your suggestion.:smile:

Susan2 said:

Hi folks! Sorry I've not been around much lately.

Paddy, have you tried something like the Coloplast Brava elastic barrier strips? They would give you extra security.

Click to expand...

Yes I've been missing you! But I did read somewhere else how busy you have been. So this time you're allowed.

Hi paddy,
I sometimes wear the belt when I am feeling anxious about leaking, and I do wear it if I have changed my appliance at night, just to ensure it stays stuck.

I also wear a band on a daily basis that has a pocket in it for my bag and keeps it all close to me. I find if I have to bend to pick things up alot my flange starts to gape on the inside edge if I don't have a band on. They are on the following site. http://www.ostomysecrets.com/os_women.phpw
They ar not cheap, postage is hideous, but they have given me so much confidence.

You may remember that I've had so much surgery that my adhesions are out of control! Unfortunately, There seems to be a mass around my waist( or what used to be my waist) which is REALLY uncomfortable. I can get away with wearing a skirt for a couple of hours but I usually live in maxi length dresses( just massively long T shirts really). They're comfy but I do need to put on my nightclothes about 6pm as by then my waist(?) is sore. Your suggestion that I wear a belt is a good one and I do have a sort of elasticated thing that looks like pants without a crotch...even that gets sore after a while but I might wear it when I go out. Thanks for your suggestionxx

I'm not leaking around the hole, It fits perfectly , it's the SUDDEN weight...I'm convinced of it! Imagine an ileo bag filled to bursting and ballooning and you'll have a rough idea of what it's like. On one occasion the "fill" happened whilst I was changing my bag... I do that kneeling over the loo, and thank God I do because it shot out like a watercannon! Luckily it was all contained in the loo.Just one of life's little quirks!!!Thanks to all of you for support and kind thoughts xxx

Paddy do you ever use flange extenders for extra security? I use them if I am going out somewhere. The brand I've found that is really good is the Coloplast brava elastic tape. They may be just the things to stop the bag falling off. I'm sure all the companies make them so do the ring around and ask them to send out samples. I've also found when I am having a problem that I just explain it to the company representatives and often they can help with something you have never thought of. All the best,
:heart: anna