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Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma Massive output. HELP


 
03-22-2012, 01:35 PM   #1
DAVI
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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 itís 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 itís getting me down and affecting my family...
03-22-2012, 06:25 PM   #2
DustyKat
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Hi DAVl

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

Dusty. xxx
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03-22-2012, 06:40 PM   #3
Miss Underestimated
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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.
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03-22-2012, 07:07 PM   #4
joshw2011
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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?
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03-23-2012, 01:50 AM   #5
DAVI
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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 .
03-23-2012, 03:10 AM   #6
Samboi
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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.
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03-23-2012, 04:09 AM   #7
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Been drinking loads of fluid and ready salted crisps.....is helping a bit.....onwards and up..lol
03-23-2012, 04:52 AM   #8
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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
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03-23-2012, 05:15 AM   #9
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Thx Kaz of to get lucozzzzzade....
03-23-2012, 05:21 AM   #10
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[FONT="Arial"]Hi DAVI

As was previously mentioned, it is still early days. When I first had my ileostomy formed (way back in 1999) I too had a substantial output for the first couple of months. It can take time, but some good advice I was given back then was to eat small and regularly. It certainly helped. I also use Loperamide and Codeine and it is a good idea to take the medication 15 mins prior to eating. I know it seems as though it won't slow down, but be encouraged because it will slow down and you will get into a routine of knowing what to eat, when to eat and when to use your meds.

Your body has to adjust to the change, but equally and in some instances more significantly, you have to adapt to the change mentally and it is by no means easy. Especially if its your first stoma or you had it formed because of an emergency operation. It will get easier DAVI and you can access your local stoma nurse, get in touch with a support group and stay strong. You will get through this and the output will change.

If you need any support or just want to vent don't hesitate to PM me. All the best
03-23-2012, 06:20 AM   #11
KazT17
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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
03-23-2012, 06:21 AM   #12
Terriernut
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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!
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05-12-2012, 05:13 PM   #13
Matt.B
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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.
05-16-2012, 05:07 PM   #14
JMC
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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.
05-16-2012, 08:47 PM   #15
D Bergy
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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
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05-17-2012, 04:58 PM   #16
hopeful
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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.
05-17-2012, 05:14 PM   #17
JMC
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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.
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.
05-17-2012, 05:16 PM   #18
hopeful
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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.
05-17-2012, 05:38 PM   #19
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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!
05-17-2012, 05:42 PM   #20
hopeful
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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...

Last edited by hopeful; 05-18-2012 at 03:52 AM.
05-18-2012, 01:18 AM   #21
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I dont currently have an ileo but Questran makes me go even more so might be worth skipping it for a day or two ?
05-18-2012, 04:01 PM   #22
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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~
05-20-2012, 07:28 PM   #23
hopeful
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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.
05-20-2012, 07:31 PM   #24
hopeful
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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~
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.
06-11-2012, 06:44 AM   #25
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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???
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06-11-2012, 06:50 AM   #26
Terriernut
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Paddy, I cant stand lucozade, but I can tolerate and even like Powerade.

I hope that things settle down for you.
06-29-2012, 12:45 AM   #27
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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.
09-03-2012, 05:11 AM   #28
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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!!!!
09-03-2012, 05:12 AM   #29
Paddy Holmes
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PS you generally find it on the Soup shelves in supermarkets wth cuppa soups x
09-03-2012, 07:59 AM   #30
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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.

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