Question: Does anyone with an ileostomy use high output bags only at night for sleeping but regular size during the day? If so, how does that work? Do you discard the day or night bag each evening or morning? That would seem like a waste. Or do you rinse them out for reuse the next day?
I have to empty my bag 6-8 times a day, which I don't consider high output nor unmanageable. But getting up a couple times a night gets to be old really quick.
Bees
I have the same problem but looking at bags from Hollister and Convatec, I found nothing that looks like it would solve the problem. Have you found anything?
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Choloplast has a large volume/high output bag.
My question is do you just throw away the bag after one night's use or rinse it out and use it again the next night? And what about the bag you wore all day that's still good? Throw that one away, too, or rinse and save till the morning?
I use the Coloplast high output bag during the day and night. During the day, if you empty it regularly, it feels no different than a regular bag. It's just longer and has an easy, no-mess tap for emptying. The best thing about it is that I can get a full night's sleep without having to get up to empty. I hook up an overnight drainage bag to my urostomy. I change both my bags every 3 days. I also use Hollister two-piece bags. I alternate between Hollister and Coloplast on bag change days. I like both of them brands. Hollister has a high output bag too, but I find the outlet tap to be a little smaller than Coloplast.
My alarm goes off at 3am every day and I just empty as necessary then back to sleep, just standard procedure to me nowadays. I wear the same 600ml bag all the time, I don't overthink it.
Bees ... I have tried the longer high output bags, but they seem too long and bother my thigh. I'm extremely high output emptying at least 15 times a day. I just use a regular size and my alarm rings at 1 am to empty. It's mostly air from ballooning and that's what causes the bursting (luckily only once in my lifetime).
But to answer your question, no do not take off and then reuse. Skin is sensitive and the less changes the better.
Good luck, Ritz
The Hollister 2-piece high volume is what I initially came home with, after some reading on here my ostomy guy is bringing an assortment over today!
Thanks for all the info!
Later
JB
I've only had my ileostomy for 16 days. My bag doesn't release the gas at a nearly fast enough rate, and it seems to me that I'm wearing a small air-filled balloon on most days. The first week went okay with a little help from the stoma nurse. This week, in 4 days, I've had 3 bag accidents, and it's getting very, very old. I'm still in the hospital after being told by my doctor I would be here 5 days max. Today, they've changed up their plans yet again, and now I don't trust my doctors at all. I'm still in tons of pain at what seems to be something as simple as my doctors reading my damn chart, yet it seems easier to blame me for any issues I'm having. The doctor also WAY oversold the procedure and told me I would be thanking him about how much better I felt and that I should have opted for this years ago. Needless to say, none of this has happened and never will. I'm not changing doctors in the middle of this, and they are supposed to be some of the best in Boston. I just wish I could see what makes them the best because I think they suck.
Thanks for listening to my rant. I really needed to get it out. At this point, I'd rather be dead than continuing in this substandard care.
Things will get better, I remember going through that, doesn't seem anybody knows or understands what's going on. It takes time, trust in the Lord!
When you figure out which equipment combos and accessories work for you, things will brighten up. I really don't think about my bag much anymore; there are way worse things!
Just remember to take care of it properly and chew your food!
Jb
Hang in there, old son. It will come good. You're only very, very early in this process. It will take quite a while for your insides to calm down. They don't like being messed with, and getting a handle on your appliance can take a few months also. Don't fight it. You will come good. You'll see.
Abefroman1969,
I have to agree with you. I lost my BCIR in July-21 and had to get a bag. Worse decision of my life. My doctor told me the same BS as you got sold. Looking back, I wish I had taken the option of 2 - 3 years before the cancer returned and had a life instead of the sack of Sh!t on my stomach that I have to deal with. It is no way to live. If I had the guts to do it, I would have already ended this miserable existence.
For high input during the day or night, I've used an irrigation sleeve which I trimmed. You will find the sleeve with most suppliers. 5 bags for approx. 25.
I just had another bag explosion, this one lasted 48 hours. If it was not for still being in the hospital with these spectacular nurses, I might find that courage we both speak of. I'm not sure I can do much more of this. Doctors are still unkind and not listening. After a year plus of being blocked, I wish I could go back to that now that the doctors had to finally give up on the "you are constipated because of "all" the opioids you take for pain." 40 whole mg's a day was their explanation for all my blockage issues. Now the pain management team is throwing the pharmacy at me and it's like shit through a goose still. Being talked to like a toddler is really pissing me off as well. I do not trust these doctors or their excuses. To put it in terms I understand, it seems they are throwing shit at a wall and seeing what sticks. So far, it's every little piece of shit sticks to me. They have ruined me financially by blaming opioids and not listening to my 40-year history with the disease. I filled out the transfer of records request along with proper HIPAA forms so the doctors at the "world-class facility" could talk to my old doctor about what was working for my care for decades, and they lied and said they called. They did not and chose not to believe me and put me in harm's way. If I'm lucky, a bag might last 48 hours. I've never made it 72. Pretty depressed, could lose my house, my career is shot, and these clowns aren't doing a damn thing even the bare minimum of listening to the patient. After the surgery and admission, I heard them giving the exact same speech I've been given about opiates. These guys have a playbook and be damned with everything else. I know several people with Crohn's and not one has the same symptoms, similar yes, the same absolutely not. I'm disgusted in pain and still not getting quality care, expensive yes, quality no. This is absolutely not what I was told was gonna happen and is, in fact, the opposite. I've now taken some of the last of my money and flown in a friend to take care of me at home again at their direction, and I have yet to go home but am spending what little money I do have flying a friend all over the country to stay at my house while I waste away at the hospital. It's crap, pun intended, and I would prefer death to this continued abuse by uncaring providers. These doctors are perfect, you don't even have to ask them, they will tell you! Maybe one last steak dinner and I'll check out, I've had enough of these butchers. Sorry to hear it's the same for you, Wendy. I know there are supportive folks here, but right now it all sounds like these doctors and their pep talks. I applaud those of you that the procedures have worked for. I just want to go home and die in peace since now they are throwing the whole pharmacy at me.
Well, this thread took an honest, wide open turn of expression of psychological and physical pain due to our conditions. I don't know each person's daily history over the years, so I will not judge.
I'll just recommend that those in this much pain find new care, start fresh with a new team at a different hospital. You may find a set of fresh eyes and ears willing to understand you.
I can't count how many neurologists I had to go through before finding the ONE that understands and tends to my MS the way it should be.
Try to hold onto hope and better times ahead.
Ritz, I also empty about 14 or more times a day, but I'm getting up every 2 to 3 hours at night. I set the alarm for every 3 hours, but typically get up every 2 to 2 and a half hours. I am so sleep deprived. I have had so many blow-outs in the past that it may be paranoia on my part.... Your note made me realize I have to reassess since I have better appliance/seal/experience doing bag now. Thanks for that! I've had ileostomy at home for the past 10 months now. I was in the hospital with multiple complications for about 6 and a half months. A long story.
I couldn't deal with those high output bags against my thigh either and forget about wearing clothes with that bag.
