Narcotics for output control

[LeoandMary1995]

We are wondering, how many people have needed opium or morphine solution (or other opiate), to moderate your ostomy output to a reasonable volume?

[lolapergola]

I take one codeine phosphate when or if I need it , which isn't that often .A lot of people can get by with Lomotil or IMMODIUM , to thicken up stool without resorting to Morphine ,I would have thought .
L.

[LeoandMary1995]

Well one would think. For well over 10 years, before opium tincture's price went galactic, that long ago. Bulking agents, lomotil, imodium, paregoric, parapectolin, then opium. The morphine substitution is because that's what the insurance covers, they won't cover opium tincture.
Without the narcotic, she fills up 3 times or more a night, depending on what she ate, with it, she gets up once unless she happens to blow and needs to deal with that.

[darick]

I use Imodium as needed to slow down output. I was on morphine for many years after multiple back surgeries. I had to ween myself off it, don't like being addicted to narcotics, and they always left my head cloudy. I couldn't imagine using them just for output control. Hopefully she can find an alternative thats less harmful on the body.

Sounds like an ileostomy with mostly liquid output? I wonder if a urostomy-style extended overnight bag may help, if the output is of that consistency. The output would be there, but not a concern of filling the bag or blow outs, as it would have somewhere to go.

[LeoandMary1995]

That might be a work around, but the fact her output is so high seems to be where the focus needs to be. She's never had a problem with the narcotic side effects much.

[Diane C]

I'd not want to add narcotics to the mix since I switched my colostomy to an ileo in Nov. 2018. I've been trying to deal with the output (among other issues). I'm now using Coloplast's high output UROSTOMY pouch. I don't cut off the spout -- it makes it easier to empty tho can be high profile at times. Changing my style of clothes... sigh. Pantyhose just don't work... I found that Convatec's high output pouches became crinkly and uncomfortable. Any other brands recommended?

I took liquid Immodium for a while and switched to gel caps. At times, they help -- at other times, they seem useless -- I start with 2. I think it depends on my input. If I go many hours without eating (when I wake up), the output seems to have much emptying from the liver with bile -- if I have this right. Very greasy with mucous. Add to that gas and bubbles. It's not digested food that I sometimes see and wow, does this acidic output stain. Using Oxi-Tide too often and laundry building up when there is leakage. (I'll be dealing with small intestinal bacterial overgrowth soon; must figure out another issue related to some kind of urogyn leakage or a possible fistula -- hope not -- last thing I want is more surgery.) so

I knew the ileo would be a challenge but so much output was NOT anticipated. It doesn't help that the surgeon created my ileo stoma on top of my MACE scar so it really dips down -- and leakage under the wafer is common although I'm using Stomahesive Strips, Cohesive Seals, Ease strips, Brava strips, etc.

I'm curious about other high output pouches. And OTC (or other meds) other than Immodium.

Thank you!

[lolapergola]

Diane , why did they change you from a colo to an ileo ? sorry , not well up on your story .
I've only ever been given LOMOTIL or Codeine Phosphate to slow things down .Codeine is supposed to be possibly habit forming but it never has been for me .In the early days it was a life saver for me , but I never needed a higher dose .I just take the odd one occasionally now .
I really hope you can get the clothes sorted out -I am a jeans girl .Jeans with zips are hopeless though as I have a hernia , but LEVI make nice elasticated jeans that disguise all ,while still looking good .
Best wishes
Lola .x

[Snowgoose]

Diane,
After testing several systems I found this Hollister two-piece system worked best for my high output plumbing (Feces and Urine). Been using for 10 years and I have no skin irritation and wear time varies from 3 to 5 days.

Wafer - NEW IMAGE FLEXTEND EW SKIN BARRIER
EW = Extended Wear lasts longer when drainage is liquid.
https://www.hollister.com/en/products/O ... in-Barrier

Bag - 14" NEW IMAGE HIGH OUTPUT POUCH
https://www.hollister.com/en/products/O ... tomy-Pouch

[pbarthen]

I had a colostomy for 5 years, but now have an ileostomy as of Dec 3, 2019. Life was pretty good with the colostomy, but unfortunately my colon had to be removed completely (along with my ileum, and gallbladder). Frequent output has been a huge problem, and appetite & diet is also a struggle. I have been learning a lot, but still haven't been able to get a good handle on the output. My doctor told me that I should not have more than 8 Imodium caplets a day (preferably 2 caps- 4 times a day), and I should take it more as a maintenance med as opposed to when needed. This never seems to be enough, and sometimes I wonder if it even stays in my system long enough to work.
I was originally told to take soluble fiber, but then learned that this will not help me because I don't have a colon. My dietician said that fiber pulls water into the digestive tract = so I could be losing more water because of this. It also gave me a full feeling which negatively effected my appetite, and also made me nauseous. She also told me that In general – foods/beverages that are high sugar - will pull fluid into the digestive tract = so I could be losing more water because of that. It is actually recommended that I don't drink a LOT of fluids, and to sip when I do have some.
Ultimately, I was told that since my stomach cannot absorb liquid like it used to, I need more SALT. Not just salty food, but Oral Re-hydration Solutions. This could be Pedialyte, Ensure Rapid Hydration Electrolyte Powder, or https://dripdrop.com to name a few. Gatorade could be an option, but it has a lot of sugar, so choose G2 which has less. The thing is, Gatorade doesn't really have enough sodium, so there are recipes to enhance it, as well as other home made oral re-hydration recipes. My problem is that they all taste too salty, and I can't drink them. V8 would be another good choice, but I don't like that either.
Another IMPORTANT thing I found out is that I am considered to have Short Bowel Syndrome. This is "due to the physical loss or the loss of function of a portion of the small and/or large intestine". This is a great site to learn more about it https://rarediseases.org/rare-diseases/ ... -syndrome/

Diane C, as far as products that I use, I also love the Hollister two-piece like Snowgoose. I like the (quiet), soft cloth material, and I've been fortunate to not have any leaks (and my bag is always full of liquid & air in the mornings). With the ileostomy, I am now using the moldable flange. I like that it wraps snugly around the stoma to help avoid leakage on the skin. I love that it's a floating flange too, so I don't have to press against my body to seal the bag. I also wouldn't go without the Adapt flat barrier ring! It helps protect the skin, and adds to keeping the flange secure. Although, I am having issues similar to you, where I get some leakage under my stoma because it seems to point down. I know I should be changing the pouch more often to avoid this, but it is challenging when it is so darn active all the time-UGH! I should go 3-4 days, but the bag used to hold up at least 6 days when I had the colostomy.

Diane, you mentioned pantyhose don't work for high profile issues. Have you tried wearing a belly band? It's like a tube top for your belly, and pregnant women wear them. I LOVE them, and have them in white, beige, and black. I wouldn't leave home without wearing it. It makes things feel snug and secure, but not tight and uncomfortable. You can get them at Target. https://www.target.com/p/maternity-bell ... lsrc=aw.ds

Well, I hope this long winded message didn't put you all to sleep, and I hope you find some helpful tips!!

Thanks!
Patty

[Mysticobra]

Short comment.
Not about narcotics but output.
With an ileo.
It's something that should be discussed before and after surgery.
Ileos are continuously outputting. As soon as I eat I'll have to empty. 2-3 times.
And if I'm snacking. Forget it.
I do admit it doesn't hurt anymore and it's just an annoyance. But a patient should be advised to the amount of times you will be emptying every day.
10-20 times. Depending on how much you eat. I think all Ileos are high output.
Richard.

[Diane C]

Patty and Snowgoose and others,

Yikes, just saw your reply here. The subject header misled me. Very helpful. Perhaps change to HIGH OUTPUT POUCHES? Yes, I do think fruity drinks (with natural sugar from the fruit) were a MAJOR problem. Makes sense re the salt. Right NOW, I'm trying to order the high output pouches. I can't seem to find the Hollister length of 14" you mentioned. I do see the 12". I was using Coloplast's high output pouches with the new, flexible star-shaped flanges. But the pouch has some kind of liner inside related to the viewing slit and it caused pancaking or a barricade so that output wouldn't go down to the bottom of the pouch. I may have to use irrigation sleeves under slacks. I'm still experimenting.

I bought an ostomy wrap with an outlet for the pouch. But pancaking is a big problem, esp while sitting or sleeping. I'm buying a big wedge for my bed to keep me UP while sleeping. At some point, I may buy a new bed that tilts. I saw a phenomenal site that offered advice on this but temp lost it. Button/Karen used to comment on beds. Miss her advice.

The leakage is because my last surgeon created the stoma on top of my MACE scar and my abdominal skin dips deeply in there along a line below and out to the right past my flange. I've been using Stomahesive strips, Eakin and other seals, cutting strips from a Stomahesive barrier (with no hole), and more. So far no luck. The amount of output is just too much. The Convatec EASE strips and some others conflict with a billing code of a product that helps to build up your skin below the barrier. Very frustrating. I'm now trying Safe n Simple strips to "square" or "curve" off the flange due the ongoing leakage. Did like the EASE strips for that.

Agree re Immodium. It was helping but less so now. The gel caps (awful taste!) seem to work best. I chew almonds -- they cause a crust which helps. I've lost weight. Just not eating due to loss of appetite due to an infection (see below) but that doesn't really help. The body is producing waste -- so without food, the output is coming from the liver or bile ducts -- very oily -- and staining clothes. I'm doing a LOT of laundry. TTide Oxi, etc.

There are other issues like small intestine bacteria overgrowth or SIBO --which generates gas and distention. After surgery -- scheduled I think on March 6 now -- when recuperating, I nope to try the FODMAP food plan. https://www.benefiber.com/fiber-in-your ... lsrc=aw.ds

The surgery ahead is because of an apparent fistula in my small intestine. Had exploratory surgery to locate it. No one has seen on a CT scan, MRI, etc. I've had a gyn or urogyn infection since Spring and it seems to be coming from my small intestine. Two surgeons -- a urogyn AND colorectal one -- are involved. This time at a different hospital... I last had surgery in Nov 2018 to close the colostomy and create the ileostomy -- and more -- removing rectum, etc. I switched to the ileostomy because I remained somewhat constipated despite irrigation. Had developed an abscess in 2015 and my intestine below the stoma became strangulated. It seems the more surgery you get, well -- you open the odds for even MORE. Hope not!

Hope you see this post. I ran out of time so will put my order in on Monday with Mercy Surgical. I am working with Carol Holleran there. https://mercyscb.com/ A small company. For now will stay with them. May switch after my March surgery. I need to help my almost 103-year old mother right now. Running late.

Thanks, all!

T-you so much!

[lbmaynard]

Hello, when I first got an ileostomy, my husband would be up every 30min or less to empty my bag. I was using the folding bags. I started using the high output pouch, my husband suggested try hooking a urine bag to the end. We did and it worked out perfectly. I sleep through out the night without worrying if it's full or have air in it.

[Lerbus]

I use Choloplast high output bags. My output is rather liquid so emptying isn’t a problem. If my output thickens I have abdominal pain so I keep it thin. I usually get up once a night. Like others I really miss Button’s knowledge and advice. I wish you the best!


2011 ileostomy (cellebellar degeneration) 2012 stoma revision, 2014 revision and tune-up, 2007, ileus, 2019

[NitaET]

yes that's why they come with the adapter! Be sure to use it! And Coloplast even makes a special drainage bag for stool too! Call them and ask for a sample!

[Diane C]

I hadn't considered the adaptor. Hmmm. And adding another bag or appliance when sleeping. Frankly, I've gone back to using irrigation sleeves at night and sometimes during the day under slacks. The amount of laundry I had was truly depressing -- with the leakage.

I had switched from Imodium to Kaopectate this week. Also called my GI doctor. It seems that quite a bit of bile is in my output. Won't describe it except to say the stains on clothing or pajamas become green and very hard to get out. I've had to throw away garments. He told me immed to get off the Kaopectate and return to Imodium. I could take more but only take 2 caplets in the AM and 2 early evening before dinner or before sleeping. Do NOT want a blockage. I will be submitting a stool sample for testing. The amount of gas and bile seem exorbitant.

It takes me a while to get to things (I wrenched my side -- I have no abdominal strength left -- and I keep getting fluid around my lungs and we can't figure it out. Not Covid.) Yes, I ordered the very elevated pillow (with other shaped pillows -- there's one for under the knees) and a U-shaped pillow for my head so it won't slip off the tilted pillow. Will be setting this up this week. ist

Have not gone on the FODMAP diet plan yet but noticing things and had to cut out fruit smoothies (all fruit -- berries, bananas, apple) -- I'd get distended within half an hour. Fresh fruit works better -- depending. Had strawberries -- no problem.

The best find of late -- those Sure Seals. THANK YOU. Find the scuba diving thread. SO beneficial! They are made of a material that reminds me of the Cymed MicroSkin appliances. I've sadly given up on that small company. I requested samples about 4x over 2 years. Received emails that they'd be arriving. They never did. I wonder if Cymed is having major financial problems and going out of business. Thank you for the recommendation!