Ostomy Bags Causing Discomfort and Pain - Need Advice

Hello all,

I am new to this forum because I had an ileostomy about 7 weeks ago now. It was a shock as I went to A and E for stomach pains and only came out of the hospital nearly a month later!

My main problem at the moment is that the bags are causing me a lot of discomfort. All the bags I've tried feel like they are literally pulling me down and like a vacuum sucking my skin where the baseplate/adhesive is. Each step I walk seems to pull/suck at my skin even more, making it really uncomfortable/almost painful so that I can't walk for long at all and I also can't stand straight because of this. I've tried one-piece and two-piece bags, flat and convex, but they are the same as they both have a big round piece of adhesive that sticks to the skin.

No one seems to have this problem and the stoma nurses didn't know how to 'fix' it. It may be because my abdomen is now a bit uneven after surgery but still after 7 weeks, no improvement...

Has anyone else had this issue and any suggestions to help would be appreciated.

Thanks

Are you having this issue when the bag has significant output, or is it an all-the-time issue? With an ileostomy, this is usually a problem with the weight of the output. How often do you empty your bag? Have you tried Imodium? 2 mg twice a day can help slow your output, which gives time for more water to be absorbed by your small bowel. Not only can this cut the times you have to empty the bag by as much as half, but it also helps the output to be lighter with less tugging on the wafer.

Also, welcome to the group! :-)

Daniel

Hello Osto888

Welcome to the group

I have read your post - hence the reply - I do not know if it shows up to you easily as I see you are online [at the time of posting].

May I suggest that if the problem is skin sensitivity, you try Salts Barrier wipes / Dansac skin protector wipes - but ONLY after you use a spray adhesive remover [again, Salts is gentle] - and then gently wash and either pat dry and then use a blow dryer so the skin is not 'rubbed' and is not pulled when trying to remove the barrier/bag.

The other point - I cannot know how the result of any scalpel work etc. internally is affecting you post-op...

and you may be experiencing either sensitivity having had division work

or alternatively there may be some kind of 'hernia' type drop from your abdomen which is causing the difficulty.

Returning to the actual collecting pouch system - perhaps you may care to try Salts Confidence B pouches [drainable] - the bags are silky against one's skin - so if you have a 'hot' body temperature they will work well.

Unlike the more standard materials that touch the skin in most manufacturers' brands, the backing plate [adhesive part] is designed a little differently - i.e., there is a non-continual outer part... so the circle of adhesive extends and can be put on - so as to open and allow for flexibility - moves subsequently with the body as it and the body stretches - there is NO PULLING either on or within the abdominal skin.

[Think of a finger plaster whereby you may use scissors to make little cuts so the tape fits around a thumb - sticks properly, but allows for full thumb joint movement.]

There may be many other points - but without knowing more - perhaps these thoughts may help initially for you to try out a few things.

As you are UK-based - Salts are a UK brand [smart good bags - not surgical in appearance] - and may be obtained through your GP via Medi Care who will deliver directly to your UK mainland address. Full info on their website / usually 24 hrs turnaround once your GP has issued the prescription.

All this takes time to adjust - BUT I remember my own feelings and experience of frustration and weakness [and of course the sadness/shock of the op too] - i.e., there was literal real discomfort which was made worse by virtue I was not accessing a suitable product.

Hang in - once you find what suits - things will improve drastically!

I must have initially posted this reply - before I read Daniel's reply above - and of course IT IS NECESSARY TO manage the output - i.e., try not to keep large bags / gas on - unemptied - regularly - for too long - because until your skin has adjusted you want to not stress it under pressure with the heavy weight of a full [large] bag output.

Good luck

Look at the websites of manufacturers - get to know their products i.e., don't be shy at looking and don't subcontract your research to your nurses - you will be able to send for samples and try things.

Also, don't be fobbed off with just the standard stuff - THERE WILL BE SOMETHING THAT YOU FIND IS COMFORTABLE - it can just take time to source and you may need to try several options until you find what is best for you.

Time invested in our feel-good body management is also good - whether a guy or a girl!

Good luck

Best wishes

Jayne

[Had a few years practice - and still learning!]

Hi,

Thanks for the reply!

No, I have this problem as soon as I put on a bag, so even if it's empty, it's pulling. So it's not to do with the weight of the bag pulling; it's somehow the way the adhesive/flange is sticking to my skin that's causing the issue. It's really strange.

Hi Jayne,

Thanks for your reply.

Most of the equipment I was given by the nurses as I got discharged was the Salts branded stuff. So I am already using the Salts barrier wipes, Salts Confidence Be pouches, etc. I also use the Salts adhesive remover!

I know what you mean by the non-continuous circle from the Salts back plate, but that does not appear to help as it's not pulling from side to side. The pulling/sucking feels like it is pulling/sucking inwards towards the body rather than pulling away from the body, if that makes sense. It's like a vacuum trying to suck the backing plate into my body!

I've tried the convex ones and think they are even worse for me. I've just asked for a sample of the Coloplast concave ones to see if they make any difference as they are the only ones that look slightly different from everything else in the market.

I don't think I have a hernia, especially at that location. It's not flat, it's not very bumpy/lumpy even though it's slightly undulating. But maybe it's the exact shape that's causing the vacuum. I don't know...

To be honest, I am getting a bit disillusioned as I said all the bags are basically the same system with a large round adhesive back plate :(

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

KK

Maybe then there is a chemical/heat over time reaction?

Have you tried one of the older types of backing of Coloplast? I say one of the older types because a research chemist isolated the fact that Coloplast is the one manufacturer (the only one in the market) that used zinc as a chemical within the mix. But you will need to check with their R&D which backing plate. I haven't got the relevant product code references to hand as I am keying.

I have a specific reason to suggest this as a very involved surgical explant trauma site to deal with, and this helped in part.

If no go after trying, I can come back again with other topical management of skin. However, I'm not sure yet whether you just have a skin issue?

Presumably, you would have said if there is an underlying infection brewing (extra sensitive areas, especially right around the sub-stoma area) after it is clean and dry after a shower with no appliance on, for example?

Jayne

Hi Osto,

Are you overweight? I ask because if your abdomen isn't fully extended (like when you're laying on your back) when you attach your wafer, it's going to feel like it's pulling on your skin when you do straighten up. Do you put your barrier on when you're standing or sitting? Same reasoning. Your skin has to be fully stretched, like you're standing up, when you apply your barrier. Also, how do you prep your skin for the barrier? I'm wondering if what you feel as sucking and pulling is really skin irritation under the barrier and what you're feeling is your skin's reaction to the adhesive. What is the condition of your skin under the barrier and around your stoma? If your skin is good, meaning no redness, weeping, or wetness, that's good. You didn't mention if you had this problem in the hospital post-surgery, or if it suddenly happened when you came home. If this is recent, then you have to figure out what changed from when things worked to now that things don't. Something is different, unless you've had this issue from day one.

Here's what I'd do. Attach a second barrier (and ring if you use one) set up identically to the one you put around your stoma, on the other side of your abdomen, at the same distance from your navel as your ostomy on the other side. Put it on with your body in the same position you put your regular barrier over your stoma. Do everything exactly the same and see if you feel the same sensation of the barrier sucking on your skin. If not, it's probably not a skin issue and related to your stoma. Personally, I've never heard anyone complain about what you're describing, so I'm curious what you find.

Let me know how you make out and we'll continue troubleshooting based on your results.

;O)

Just had a thought - forgive if inappropriate - just diss it!

You are a gentleman - do you have hairy abdominal skin?

Do you shave any related area?

What position are you in when you prep and apply your appliance?

May I suggest also something a little offbeat - may be worth - prepping up your other abdominal side (away from the stoma area / any surgical sutures or scar tissues even remotely close) - and then applying a bag to your 'other' side - dress as usual - and see what happens?

BW

Jayne

Another suggestion ...

Not all bag plates are round ...

Dansac does some really nice oval slim backing one-pieces, and they have one specific product too that is designed specifically to better react with the moisture within our skin.

Again - regret - today - don't have product code to hand - but small and oval and new R&D [2020 launch I seem to remember.]

W30bob may have a point whereby this may not be a sensitivity to product issue - but something going on under the surface [no specific area - like might be related to a post-op fluid - perhaps worth a mention to your surgical team - caught and drained early - best outcome - no spreading or further infection if there is such a suspicion?

Re Exercise gentle rebuild of muscles: Are you doing gentle planking - from the chair - and is this working - anything else physio has suggested?

BW

Jayne

Hi,

You said the appliance is pulling down. Are you using a belt, wrap, stealth belt, or something else to help hold it up?

Hi Bob,

I am the opposite of being overweight. I'm probably too skinny! I put on the bag when standing up as straight as possible. I still can't stand fully straight yet after my surgery, even without the bag, but the bag makes it worse.

Prep for the skin is how I was taught. Barrier wipe, then let it dry, then apply the bag which I have already attached the barrier ring on. There does not appear to be skin irritation, no redness or spots, and it looks normal, so I'm not sure if it's a reaction to the adhesive. I've had this problem from day one I had to use a bag!

I will try and put a bag on the other side to see if it gives the same sensation as you and Jayne have suggested and let you know.

Hi Jayne,

Bob and your post have sort of overlapped, so some answers are in my reply to his post.

I haven't tried many products as I was given some samples in the hospital, and they all felt the same. They didn't even suggest two-piece bags, and I only found out about them when I got discharged and ordered some samples, but again the same issue.

I don't think there is any infection; everything seems normal when I change my bags. As mentioned in Bob's reply, I stand up as straight as possible when putting on my bag, and I can feel the pressure straight away. When I sit down for a bit then stand up, it's even worse, and I am mega hunched over until I gradually stretch myself to stand as straight as possible but always with the vacuum feeling.

I'm not really doing any exercises at the moment apart from the basic "core4" exercises. I don't feel confident in doing anything more strenuous because of the discomfort with the bag, and also the surgery wound is still tight and producing the occasional twinge!

Hi Jax,

It's not really pulling down but pulling inwards/a vacuum towards my skin, so I'm not sure a belt would help...

G-Day osto888, You have reminded me when I had my colon removed I had a problem standing up straight and it was because the surgeon had stitched me up too tight and it was the stitches pulling me down. If I tried to straighten up it felt like something was going to tear. Regards, IGGIE

G'day Iggie,

I was also thinking that maybe my surgeon has stitched me too tight but not sure as still relatively early at only 7 weeks so maybe only a natural feeling after surgery. How was yours fixed? Did it resolve itself over time or did you need an operation to correct it or are you still unable to straighten yourself?

Hi Osto,

Thanks for the info. I'm starting to wonder if what you're experiencing is from scar tissue. I don't know why you have your ostomy, but can you leave your barrier off for any length of time? Colostomates can do this if they irrigate or understand their transit time from mouth to bag, but ileostomates have a harder time with this since the colon isn't in play to absorb all the liquids. But it would be interesting to leave your barrier off for as long as possible and see if the tugging/pulling sensation manifests or is gone.

I remember when they peeled my midsection open like a grape it took a while for me to stand upright with all the sutures, staples, and stitches used to hold the various layers of the abdominal wall together. I don't remember how long it took to get back to feeling normal when standing straight up, but 7 weeks may be a bit premature. Scar tissue has a funny way of feeling like you're describing in some instances, and the actual location of the pain might not be where you think it's originating. Let's see how you make out with the second barrier on your other side, but if that turns up nothing it might be worth seeing what you feel when you have no barrier on for a length of time. Thanks for the reply.

Regards,

Bob

Hi Bob,

I won't be able to leave a bag off for long as it's very unpredictable, but I know as soon as I take a bag off, there's instant relief from the vacuum, and when I put a new one on, that sensation is back.

I have now tried putting the bag on the other side, and there's no pulling/sucking sensation. In fact, you don't really notice it's there! I assume this is what it is supposed to feel like for most people when you change to a new empty bag? So that must mean that it is the shape around the stoma area that is causing my issue? If that is the case, what can I do?

Over time, I just kept stretching, and it was a few weeks before it was OK.

Yes. It helps to be old fogies like us with all that loose skin. 😂

Hello again Osto888

Now able to access info I spoke about earlier :-

 Suggest you try these Dansac products .....

I have found the data and my samples for you:

I have two types of pouches which may help with your non-round stoma ..... [both oval wafers and both drainable]

PRODUCT REF3023-15 [this one has the starter part of the hole in the middle of the oval wafer]

The Nova Life System.

TRE barrier technology. Leaflet ref A/S LOD0175 - explains the clinical stuff behind why it works

and

Dansac Nova Life 1 Midi Open [different type of backing but still oval]

PRODUCT REF9230-10 [this one has the starter part of the hole near the top of the oval wafer]

The difference being, you can center your stoma cut out near the top or the middle ......

Please let us know how you get on.

Like I said - if no go then perhaps the oval shape is not a helpful option.

HOWEVER the TRE type of backing worked for me at one point when I was experiencing a similar situation as you describe - the sucking in [but in my case we are talking trauma site having had the TIEs device actually cut out of my abdomen/bowel - BUT nonetheless - the sucking situation indicates [to me - AND I AM NOT A MEDIC!] does indicate there may well be a [void ie a pocket in some form within your deeper skin layers ..... Obviously I also agree that scar tissue - particularly scar tissue which is in the process of "bonding again" [forgive the non-medical term - but after the number of surgeries I have had that bonding [pulling into the actual new scar tissue as in the scalpel site .... is also relevant.

I might encourage you to just get the stoma area CT'd .... 'cause it may be a pocket of fluid ..... PARTICULARLY AS YOU HAVE PUT ON ANOTHER BAG THE OTHER SIDE - I SUGGESTED THIS SO YOU COULD SEE FOR YOURSELF THE 'SOURCE' OF THE PULLING .... and this confirms it is the drawing of the incisional work - not the skin sensitivity per se.

Like I say I am not a medic - only you and your team can see the 'live' situation.!

Seriously I would get into the shower - no bag on ..... and try a few very gentle yoga 'tenses' - not stretches as such ....... have the water really warm, and then in very slow slow motion keeping your legs straight and arms straight run them up to the ceiling and down to your toes - in a very slow repeated rolling movement.

IMO experience - particularly when carrying little fat - it is not always easy to 'feel' subcutaneous fluid pockets. Its not as though you are carrying extra weight.

When the pulling comes on - when first putting on the bag - [after you have blow dried] is your skin / stoma area 'hot' or lukewarm or quite cool?

Also, after cleaning the stoma - when promoting it to become pert when about to the bag on - does the pulling/sucking feeling/situation begin then?

Oh yes - and do you warm your bags/backing plate/wafers - or are they put on at room temperature [straight from your bathroom cupboard?]

[When you have had your Salts 'sunburst' backing ones on, which are v. thin and finely 'splayed' at the outer broken arc, do you get a separated 'ring' of grey residue left upon spraying the appliance off - ie can you just use the spray without pulling or freeing manually to promote a peel off?]

You may find these little peripheral Q's strange - but I ask as I use a variety of bags and sometimes separate plates too ...... although generally, I am able just to wear the Salts Comfort B now as a one piece - but not in the heat or when flying or deep-seated low driving if doing long mileage [400m plus] [all different seating positions - and belts / harnesses .... but even in regular 4x4 cars in the heat and longer holding under pressure before emptying can cause a back pressure with me [not a blowout - BUT THE BACK PRESSURE ACTUALLY CAUSES THE STOMA TO BACK FEED AND AS SUCH THIS IN ITSELF HAS A 'Sucking' feel [but then I have also different surgical layering too ..... but it is concomitant with BACK PRESSURE! -

Your pain on straightening does sound like an internal adhesion kind of thing - UNLESS it's back pressure against an internal fluid pocket [and it is a simple procedure to have this "punctured" and drained within radiology - they can guide straight it - and once drained the intense local pain of the pocket area beneath the abdominal skin [feels like it's in about an inch or so - depending on where the inflammation has gathered. Anyhow - simple to drain - BUT GET IT DONE - IF THAT IS WHAT IT IS - sooner rather than later.

Don't mean to 'magnify' an issue that may not exist - BUT if it is not ONLY back pressure - and your pain on standing to my mind suggests it may not be - then get checked out under the scanner. Your surgeon may well be able to 'feel' ----- I can sometimes feel under behind the stoma some weeks after surgery - but an "internal" fluid or other gathering - which can build up some time after surgery - may explain what MAY be going on.

GOOD LUCK - Hope it's just simply a process of maybe a little underweight stressing of suture sites - keep the shower and gentle exercise - it will help.

BW

Jayne

Hi Jayne,

Thanks for your long reply!

I will order samples of both your suggestions and see if they make a difference. Thanks. I'm not sure where you got the impression that my stoma wasn't round though? It might not be perfectly round but I think it's probably a standard shape...

I just got some samples from Pelican, the ModaVi. Let's see if those help as well!

You can hardly turn around in my shower so I doubt I'll be able to do those exercises lol. I also haven't showered with the bag off yet...

I never have blow-dried that area and the sensation comes as soon as I put the bags on and the adhesive starts to grip the skin. My stoma protrudes out probably just less than an inch so I don't need to 'promote' it to put the bag on. And I just take the bags out of the box and put them on without warming them! No residue when removing the appliance.

I've moved from the area I've had surgery for the moment so it's more difficult to get in touch with the surgeon, but to be honest, I think I'm going to try these different bags first as all that medical stuff sounds a little scary and hope it's just finding the right bag and lowering the surgery inflammation over time will solve it. Otherwise, I will have to go back to the doctors to ask for more help.

What do you mean by back pressure?

I deal with the same. It disgusts me.

Osto,

Back pressure = backing up pressure - can be wind or impacted material - that which builds and feels like a stoppage deeper in the abdomen.

If it gets really bad it can come close to making one wretch - but usually, if one manages one's diet well, the BP clears quite fast. If it happens, it is also helpful to massage quite deeply around the stoma too, as this promotes the peristalsis to kick in (rather like massaging in a forward movement at the sides under one's rib cage when one has indigestion - or indeed trapped air [prior to becoming a problem in the small bowel, that is - lol]).

As regards the oval stoma/backplate - sorry, must have crossed with another post - it's just that the oval wafers do 'pull' differently, so in themselves, may be helpful.

BW

J

I'm having the same problem. I've tried support belts, but they do not help. I keep my bag emptied every couple of hours. I also get pain in my stomach.