I can't deal with this crap (literally)

[nogutsnoglory]

Tonight I twice had a leak and needed to change bags. I have gone through 3 bags in only 3 hours and barely slept at all. 2 I tossed and the new one. I am scared to move at night and I am a side sleeper which I think contributes to my issue.

I don't know what I'm doing wrong and can't it pick a better time to mess with me? I didn't use any powder or barrier wipe now. I ordered the extra adhesive stuff and the flange protectors. The side protectors I have already used but still no more than a day and a half out of any bag. I have tried some samples.

I'm feeling so frustrated and more so I feel like my humanity is being lost, I feel gross and dirty. It's impossible to be fully clean, poop residue that is invisible is everywhere in my bathroom when I wipe around. I want to vomit when I brush my teeth because its probably on my toothbrush and comb and all.

I'm sorry for ranting I'm just so upset and drained and I wish I never had this surgery. I didn't have a choice but the suffering with incontinence and diapers wasn't much worse than this. They are both so horrible.

Ill just go back now to gulping Gatorade to avoid fainting and try to get some rest. Ugh!

 

[Beach bum]

I don't have a stoma myself and I hope that someone on here will be able to give you some advice on that front and point you in the direction of a product that works for you.
But I really just wanted to send you a virtual hug because I don't know how anyone would deal with the crap hand you have been given.
:hug:
On a practical note , would it be a good idea to get a nice shiny new toothbrush and keep it at the kitchen sink instead, it would at least give you one less gross out a day.
Chin up hun.

 

[Samboi]

Be patient NGNG.
It really takes awhile for a stoma to settle.
I look back on my experience - and to be honest - I have no idea how I got through it.
There were lots of messes, mistakes and tears of anger and frustration.
I hated it and wanted to pull it all off.
I couldn't sleep properly, had to get up all the time to empty.
It was awful.
But it does get better.
It does settle.
You'll work out the right equipment.
It just takes time.
Hang in there buddy.

 

[DJW]

Hi NGNG. What you're going through is very frustrating. Just want to check a few things that work for me
1. Is there a 1/8 inch gap between the stoma and wafer - once the wafer is on fill it with stoma powder
2. Cut the opening even if it says roll out to size
3. With high watery out put stoma paste isn't the best option - try Eakin seals
4. Use a stoma belt
5. Call the ostomy nurse and see if you can get a visit

 

[nogutsnoglory]

DJW I have done all that but not the belt. I guess it's time try it but I'm just not convinced.

 

[Gra]

Fellow Newbie

Tonight I twice had a leak and needed to change bags. I have gone through 3 bags in only 3 hours and barely slept at all. 2 I tossed and the new one. I am scared to move at night and I am a side sleeper which I think contributes to my issue.

I don't know what I'm doing wrong and can't it pick a better time to mess with me? I didn't use any powder or barrier wipe now. I ordered the extra adhesive stuff and the flange protectors. The side protectors I have already used but still no more than a day and a half out of any bag. I have tried some samples.

I'm feeling so frustrated and more so I feel like my humanity is being lost, I feel gross and dirty. It's impossible to be fully clean, poop residue that is invisible is everywhere in my bathroom when I wipe around. I want to vomit when I brush my teeth because its probably on my toothbrush and comb and all.

I'm sorry for ranting I'm just so upset and drained and I wish I never had this surgery. I didn't have a choice but the suffering with incontinence and diapers wasn't much worse than this. They are both so horrible.

Ill just go back now to gulping Gatorade to avoid fainting and try to get some rest. Ugh!

I really feel for you, I had surgery (Right hemicolectomy and ileostomy) only about 6 weeks ago, and for the first week or three after discharge from hospital I was having a lot of difficulty, several times had leaks, and was wishing I'd never had the surgery. It represents a huge change in your lifestyle, at the same time that you are struggling to cope with after effects of the surgery. As little as two weeks ago I was thinking I would never be able to go back to work, the logistics of working with a bag just seemed too huge. Only just this week I am starting to at least try to think of things I could do to make the return to work feasible.

All I can suggest is to try to not let it get on top of you, just try to live with it as best as you can and you will probably find it gets easier (albeit very slowly) as time goes on and you get more experience.

Have you got any post hospital support? I had a stoma nurse dropping in each day (arranged by the hospital) to help me and give me tips while I changed the bag, and this was invaluable. I wrote all the tips down, I use the ones that work for me, those that don’t I discard (I might try them again later when I get more experience).

If you don’t have any in-home support, your hospital or doctor should be able to give you a stoma support number you can call to get advice when you need it.

And don’t forget to use this forum to ask questions, get advice from those that have been around with a stoma, and especially feel free to VENT your frustration’s as much as you want - we are here to listen as well as to help if we can.

(PS - at first I used to move all my dental stuff (toothbrush etc) right out of the bathroom before doing a bag change. Now I move them to a separate shelf in the bathroom cabinet where they cant possibly get contaminated. (Yes the thought is repulsive). And clean all the surfaces down with a strong bathroom cleaner after you have done your bag change.)

Many regards, from a fellow ostomate newbie.
Gra

 

[annawato]

I found a belt was one of the things that helped me stop night leaks. Also does your stoma protrude a bit? You may find a convex appliance helps even if you don't think you need one.
Other things to think of - is the skin totally dry before you put your wafer on? Are you using any lotions that may affect the adhesion? Are you holding the wafer in place firmly for a couple of minuets after putting on to help adhesion.
You could also try setting an alarm to wake you up so that you empty the bag before it gets overfull. i did this for a while.
Also eat an apple an hour before bed to slow it all down.
Other than that all I can say is that it REALLY does get better. I was exactly where your are now for the first 6 - 8 weeks and now it doesn't happen at all. so you will get there. Just hang in there and keep on trying new appliances until you find the right one.
Billions of hugs,
:heart: anna

 

[mattf1977]

Hi Mate
I think the advise you have already been given is great. I just wanted to give you some support.
I got a Stoma 13 months ago and remember how frustrating it could be at first, but i can 100% assure you your life is gonna be so much better with for it.
I am a 37 year old self employed flooring contractor and work full time with it, go swimming with my son, go down the pub with my mates. If you had incontinence problems before you will not look back. It just takes a bit of time for your body and yourself to adjust. As others have said, it can be very watery at first, and will be on occasions, with lots of output. This is the equivalent of having diarrhea and will calm down. This is when you are going to have the most issues with leaks as watery output gets under the seal then its just a matter of time before it leaks. When it is thicker it will not do this. If you eat marshmallows or jelly sweets this can thicken it up a bit which will help. Also when you change or empty the bag make sure there is some air in there or you can get what is called pancaking. If the output has nowhere to go it will force itself under the seal then leak.
You also shouldn't be getting in a mess when changing bags. Get everything you need out ready lined up on the shelf/sideboard in the bathroom, tuck your disposable bag into your pants under the Stoma pouch so when you remove it you can drop it straight in, keep it there whilst your cleaning the Stoma to catch anything that comes out (it always does) until you have the new one on. I change my bag every day to stop getting any sores around it. I have even changed a bag in the back of my van once because of an emergency.
:hang:

 

[PsychoJane]

Also, don't forget that because your surgery is so recent, you are probably going through the resize of the stoma. It shrinks considerably during the first weeks and this results in change in size that can be enough to cause leaks from day to day. Add that the fact the output is more watery at first, you are in for a few challenges.

I remember that when I got my ostomy back in the days I would use something called Ile-sorb. It's like some sort of powder/granules that you put in your bag and when the output comes out it thickens everything. I found it to be helpful in my early days, especially for the nights since the output gets firmer and can't cause as much leaking.
http://www.exmed.net/p-1518-cymed-ile-sorb-absorbent-ileostomy-gel-packets.aspx

Did you contact Salts company? They have the Dermacol that could be useful at this point in the process. I have tried wondering if it would suits me but my stoma is kinda too short otherwise I think it would have been promising to prevent leaks. If you ask they will send you quite a bit of sample. I know they sent me 3 different size of it so I could find the proper fit and all. Their customer service is at the least excellent so if you have not tried their product I think it worth an email.

 

[nogutsnoglory]

Also, don't forget that because your surgery is so recent, you are probably going through the resize of the stoma. It shrinks considerably during the first weeks and this results in change in size that can be enough to cause leaks from day to day. Add that the fact the output is more watery at first, you are in for a few challenges.

I remember that when I got my ostomy back in the days I would use something called Ile-sorb. It's like some sort of powder/granules that you put in your bag and when the output comes out it thickens everything. I found it to be helpful in my early days, especially for the nights since the output gets firmer and can't cause as much leaking.
http://www.exmed.net/p-1518-cymed-ile-sorb-absorbent-ileostomy-gel-packets.aspx

Did you contact Salts company? They have the Dermacol that could be useful at this point in the process. I have tried wondering if it would suits me but my stoma is kinda too short otherwise I think it would have been promising to prevent leaks. If you ask they will send you quite a bit of sample. I know they sent me 3 different size of it so I could find the proper fit and all. Their customer service is at the least excellent so if you have not tried their product I think it worth an email.

I am getting a sample of Ile-sorb, can't wait it sounds very helpful.

The Salts company is in the UK so I probably couldn't get it here in the US.

I'm proud to say my current pouch is on for 3 days now. It's a record! I'm paranoid and checking but so far its ok. I put paste by the barrier and also Brava flange extenders for extra protection. The bag is starting to stink though even after I showered with it. I put a deodorant gel inside but I probably need to change tonight or tomorrow by the latest.

The biggest issue now is my cramping and nausea. My insurance won't cover much Zofran and its so expensive!!

 

[highlandsrock]

Hello NGNG

When I was stoma'd I had a problem with the lower, non-active opening started to prolapse and so the stoma nurse suggested wearing an elasticated band around my waist, over the stoma site. (I guess that's what other posts mean by a "stoma belt"). I would recommend them to anyone with a stoma. Not only did it prevent the prolapse getting worse but it gave me a huge amount of confidence going out and about in public. Up until then I had been worried that the pouch might detach itself whilst I was commuting by train up to London. After getting the belt I never worried again and never had a leak. I very rarely took it off and it makes side sleeping a lot less fraught!

With regards to actually changing the pouch - the stoma nurse said every two days but I preferred to do it daily. At first you could guarantee that the stoma would "wake up" just at the point of removing the bag. It clearly needed "house training". I found that by changing the pouch first thing in the morning, before having breakfast, I could usually guarantee a non-messy outcome.

..and finally - watery output - the Imodium worked for me and I'm still on them now even though the stoma has gone

I wish you well dealing with the stoma. It does get easier with experience.

 

[PsychoJane]

You can get the samples at the least from Salt. They shipped me a bundle of product straight from UK. I'm guessing that worst would happen is that you like their product and then you'd have to find someone that could buy and reship stuff. I know we have certain product here in Quebec. If you were to like those dermacol and could not get them shipped straight to you, I would not mind helping you with that but I think you first need to try them .

What brand of products are you using? I found certain allows more smelling than other. The gellies are suppose to reduce smell too I believe (but to be honest, 14 years after, I can't remember if they were actually good at reducing the smell, I remember they were to improve the consistency though).

I found to put a tad of peroxide in my bag a helpful solution for the smell but it does not improve the capacity of certain plastic to not allow the smell... As previously said, certain agree better with my digestive enzymes than other I guess.

 

[DJW]

Hey NGNG. Just wondering how you're doing? Have you tried imodium yet?
Hang in there my friend.

 

[Nyx]

I used to put mouthwash in my bag to help with the smell. Also, if you have a 2 piece you can always take the bag off and wash it with soap and water, I do that all the time and I get a few months use out of one bag (I pay for my own supplies so I need to economize where I can). Hope you're doing alright!

 

[nogutsnoglory]

You guys are the best! I'd be afraid to put peroxide or mouthwash that could burn the stoma no? I am going to try tic tacs. I tried the Hollister deodorant gel but wasn't impressed.

Right now I'm using mainly hollister since that's what they sent me home with but I'm experimenting with samples from Convatec, coloplast and the other big ones. I got a bunch of goodies so just trial and error. Went to an ostomy support group too and got a lot of great product tips and met some nice people.

I know in time this will all get easier, ill have a routine and be a stoma pro lol.

 

[mattf1977]

Glad to hear your doing better mate. I would also recommend using a belt. It makes you feel more confidant when out and about. It stops it from rustling and it's almost impossible to tell you have a bag, as it pulls it in tighter to your body.

 

[Nyx]

I've never had a problem with the mouthwash burning my stoma...you only use about a teaspoon or less and I'd think that unless you're hanging upside down, it wouldn't get anywhere near your stoma.

 

[nogutsnoglory]

I've never had a problem with the mouthwash burning my stoma...you only use about a teaspoon or less and I'd think that unless you're hanging upside down, it wouldn't get anywhere near your stoma.

Yeah I don't think I have the energy or skill to do any cartwheels anytime soon

 

[Mountaingem]

Sending gentle hugs your way, noguts, I am so sorry you're struggling. :hug:

 

[annawato]

PsychoJane, I used the dermacol's with my last stoma and found them to be brilliant for stopping leaks. My stoma was kind of flat too but I found that if I just cut the plastic down to about 1mm it would still hug the stoma and stop leaks under the flange. I really wish I could use it now but its not so good for odd shaped stomas.

I can't imagine mouthwash hurting your stoma since its used in the mouth, but I guess you usually spit it out. I believe its mainly alcohol anyway. Peroxide I'd be a bit wary of if it was going to come on contact with your stoma.