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...
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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.