New stoma issues

Hi, first post here.

I am 3 weeks post-op for removal of a bowel tumour - which seems to be successful, no further treatment for that - and am left with a stoma for the next few months before reversal.

I'm sure these are common problems, so may well have veen answered before, but I'll try anyway.

We had some issues with leakage early on and have settled for Salts soft convex one-piece bags with stomahesive for extra sealing. This seems to work well but I need to get better at applying the paste to my tummy contours, it always leaks in one place from one particular skin fold.

I really now have 2 issues :

1. I need to firm up my output, so the bag fills less often, it is almost always watery, and this does not help with leakage or emptying. I am on Loperamide, but just told it is a low dose and is in the process of being increased.

2. How do I know when I am asleep that it heeds emptying. If I solve point 1 above it will help, but with no sensation, I currently don 't know when to wake up to empty. The bag can fill in half an hour, so setting alarms womt help. Things may settle down to be regular, but last night I had to empty 4 times, but luckily I woke up to do it. Last week I had an overfill one time while asleep and it blew the bag and made a mess, so I was showering and changing the bag at 3 in the morning.

Any thoughts welcome,
TD

Welcome!

You are still in the adjustment stages, so hang in there, it does get better..just in time for your reversal!

Are you still on a low fiber diet? Did your doctor give you any instructions for fiber supplements? Imodium type products slow movement down, but fiber (Metamucil types) bulk up, which makes your output thicker. It's a fine line to find what works for your body and ostomates usually don't need full doses to even things out.

You may want to set an alarm clock for every two hours so you wake, emtpy, go back to sleep...not ideal but eventually you won't have to wake up so much (if at all).

Adjusting the foods and beverages you consume can help, too. Sugary (and artificial sugars) items increase both the transit time and volume...cut juices with water to help. Also, if you eat salty snacks (pretzels/crackers) when drinking your body will absorb more fluids.

I am trying things to firm up output, reducing fluid intake seems to help, Loperamide adds to it, and I'm now experimenting with meal times. I suspect between these, I should be able to firm up.

However, I still need to empty several (5/6) times a night so waking up is a problem. I'm currently setting my alarm for every hour until about 3 am when it quietens siwn, even then I could miss it and get a blowout. This is obviously not sustainable as I'm barely sleeping.

I cannot believe it's beyond the wit of man to have a gadget to let you know when the bag needs emptying.

ks1905 said...
What kind of Ileo do you have? And end-ileo or Loop ileo?

When I had my loop ileo it would put out a lot, to survive the night I would use a high-output bag which holds twice as much as normal ostomy bag. Ask for some samples from the manufacture.

As your body starts to heal the output will decrease and your intestine(s) will absorb more, right now it/they are in shock and not working as well as it/they should.

I used the silca gel packs and they did help but not enough to make it through the night.

An end ilio I think. Sounds silly but nobody at the hospital said anything other than "stoma". As I use one-piece bags, and change them every other day, using a different bag for overnight would be a pain. What I would need ideally is an attachment to my bag, but I don't think they make them - can't imagine why, seems very logical to me.

ks1905 said...

Tricky Dicky said...

ks1905 said...
What kind of Ileo do you have? And end-ileo or Loop ileo?

When I had my loop ileo it would put out a lot, to survive the night I would use a high-output bag which holds twice as much as normal ostomy bag. Ask for some samples from the manufacture.

As your body starts to heal the output will decrease and your intestine(s) will absorb more, right now it/they are in shock and not working as well as it/they should.

I used the silca gel packs and they did help but not enough to make it through the night.

An end ilio I think. Sounds silly but nobody at the hospital said anything other than "stoma". As I use one-piece bags, and change them every other day, using a different bag for overnight would be a pain. What I would need ideally is an attachment to my bag, but I don't think they make them - can't imagine why, seems very logical to me.

Or you could just wear a high-output bag all the time. They make 1-piece high-output bags but I used a 2-piece system so I could change the bag whenever I wanted to.

They make a foley attachment for bags but your insurance company probably won't cover it. that is a hose that goes to an additional bag.

I'm in the UK so insurance doesn't come into it. We pay our taxes, so I can just order supplies whenever I need to and the bill goes to my GP

Well I never, thought it would never happen again. I have just been through an entire night without emptying my bag ..... First time since tne op 6 weeks ago.- HOORAY.

I am in hospital but even so, the increased loperamide and codeine seem to be working a treat. Output is much, much thicker and having to empty bag less often. I emptied last thing last night at 11, then although I woke through the night to see if it was full, it didn't need empyting til 6 this morning.

Hopefully that will satisfy the doctors this morning enough for me to go home today, but it makes the possibility of me getting some decent sleep maybe a reality. Of course, a side effect of thicker output is less chance of leakage, so win/win all round.

Phew, didn't think this day would come. Happy.

embersglow1 said...
Yayyy! Im 3 weeks post op and get up once a night to pee and empty. Much better than 6+ with my UC. Glad to hear you are doing better!

Ill keep my fingers crossed for your release from the hospital!

Thanks. The doc took a quick look at my numbers this morning and let me out.

Need to take all my meds and limit the fluid intake to keep this output under control, I don't want to suffer dehydration like that agsin, not nice.

rainbow77 said...
Hi I just had my operation too and I know what you are going through. I found that eating a bag of marshmellows really helps. I also use a large bag for night time. I stick to small meals. Like others have said it does take a little to adjust so hang in there

Have tried marshmellows and jelly babies and all the things they recommend, but seems to have little effect. i'll stick to the drugs. After the last week in hospital, i have a better understanding of how things work, so hopefully things will be a bit better now.