Managing liquid intake with an ileostomy - need advice!

Hello, I had my ileostomy in November and have had several leaks (not fun). I was told to drink between 8-10 glasses of liquid (mostly water) a day but not around meals. That limits when to drink but I think this is causing the leaks. Could someone please help me to try and resolve this problem. Many thanks........Tinmlizzy

Hi, I've had my ileostomy for two years now and I was told never to drink plain water. I was always to drink isotonic drinks like Lucozade Sport. I'm in the UK, these drinks have electrolytes in them that we lose with the high output that we have! Water doesn't give us any goodness other than hydration and in my experience, a lot of liquid just causes the output to be so watery and will cause leaks! I take 4 sachets of Diarolyte in 500ml of water every day to keep me hydrated and so far I haven't had dehydration issues! Keep your eye on your B12 level, people with ileostomies don't absorb B12 and over time you may find you get deficient! A year and a half after having my surgery, I was feeling so bad, it turned out I had a low B12 and was given a six-injection loading dose and I have to have an injection every three months now for life! B12 deficiency can cause neurological problems if left too long without treatment so very important to watch that! In my experience, if I drink a lot of liquid it just runs right through me and causes all sorts of problems which we don't need on top of everything else! Hope this helps! Take care!

Hi 2marilyn2, thank you for your speedy response to my plea for help and for sharing how you manage your liquid problem. Not sure if I can buy Diarolyte here in Canada but will certainly make inquiries. As for B12, my blood work gets checked next week so will definitely be asking and following up on that. Thanks again. All the best :))

Interesting. Mine has been a year and I seem always to be thirsty, but I drink lots of stuff (no alcohol) and sometimes I can go more than a week without changing. I think it just matters if you are lucky enough to get a good fit. I have also had times when I had to change twice in one day. The best to you, certainly not easy.

Hi

I take a B12 sublingual vitamin every day 1000... my bloodwork always shows high B12 so it works for me... plus I take a potassium micro K... drink water and Gatorade for electrolytes... had my ileostomy for 20 years and have had a couple of hospital visits for blockages... I had leaks a lot in the beginning but after getting a good fit change it all once a week... take care

Ange

Hi all, I've had my ileo for 35 years and have always used a variety starting with coffee in the morning, then Gatorade, lactose-free milk, green tea, V-8 juice, and of course water. But I only sip on these occasionally, along with a cold beer. I don't drink all of these every day but mix them in with snacks and meals. Also, a Coke or Sprite at fast food places.

Tinmlizzy, yes to drinking sports beverages such as Gatorade. To manage leaks, try a convex wafer such as Convatec Esteem+ Soft Convex or Coloplast Convex 16739. Also, you can add a Hollister Adapt Convex ring to a flat wafer.

2marilyn2 is absolutely correct on all issues. I just saw my primary care doctor, and everything that she says is exactly what he said. It is rather easy to get electrolyte tablets, powder, or even already mixed up in drinks just about anywhere -- pharmacies, vitamin shops, etc. I just got some online and will start them today.

I had multiple pouch failures also (4 times in one night!) and eventually realized it was because I had lost 20 pounds in a month and my body physiology had changed and did not allow the pouch to stick. I changed pouches and that was solved.

100% agree!