Ostomy bags pulling/sucking at skin. Help.

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osto888

Hello all,

I am new to this forum because I had an ilieostomy 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 2 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 

Mysterious Mose

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 Immodium? 2mg 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

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Jayne

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 time of posting].

 

May I suggest that if the problem is a skin sensitivity you try Salts Barrier wipes / Dansac skin protectior nipes - 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 emove the barrier /bag.

 

The Other point - I can not know how the result of any scaple work etc internally is affecting you post op ....

and you may be experiencing either sensitity having had division work

or alternatively there may 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 ones 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 - ie there is a a non continual outter 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 PULLINGeither 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 obtainined through your GP via Medi Care who will deliver directly to your UK mainland address.  Full info on their web site / 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]- ie 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 - ie try not 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 web sites of maufacturers  -  get to know their products ie don't be shy at looking and dont 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 - can just take time to source and you may need to try several options until you find what is best for you.

 

Times 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!].

 

 

osto888
Reply to Mysterious Mose

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.

osto888
Reply to Jayne

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 as I said all the bags are basically the same system with a large round adhesive back plate :(

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
Jayne
Reply to osto888

KK

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

Have your tried one of the older type of backing of coloplast ..... I say one of the older types - BECAUSE ... a research chemist isolated the fct that Coloplast is the one manufactuere [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 - [Haven't got the relevant product code refs to hand as I am keying]

 

I have specific reason to suggest this as v.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, not sure - yet - whether you just have a skin issue?

 

Presumably you would have sid if there is underlying infection brewing [ extra sensitive areas - esp right around the sub stoma area [after it is clean cosy after a shower with no appliance on for example?

 

Jayne

w30bob

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 1.  

  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)

Jayne

JUst had a thought - forgive if inappropropriate - just diss it!

 

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

Do you shave any related area?

 

What position are you 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

Jayne

Another suggestion ...

NOT all bag plates are round .....

Dansac do 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 lauch i seem to rmember.]

 

W30bob may have a point where by 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 sprreading 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

14jax71

Hi,

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

osto888
Reply to w30bob

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, yet 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 looks normal so not sure if it's a reaction to 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.

osto888
Reply to Jayne

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 hospital and they all felt the same. They didn't even suggest 2 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!

osto888
Reply to 14jax71

Hi Jax, 

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

IGGIE
Reply to osto888

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 to 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

osto888
Reply to 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? 

w30bob
Reply to osto888

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 lenght 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 or 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 awhile 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

osto888
Reply to w30bob

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 then that sensation is back.

I have now tried putting on 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?

 

IGGIE
Reply to osto888

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

Mysterious Mose
Reply to IGGIE

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

Jayne
Reply to osto888

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 type of pounches 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 cliical stuff behind why it works

 

 

and

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

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

The difference being, you can centre 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 trama site having had the TIEs device actually cut out of my abdomen/bowel - BUT nonetheless - the sucking situation idicates [to me - AND I AM NOT A MEDIC !] does indicate there may well be a [viod ie a pocket in some form within your deeper skin layers ..... Obviously I also agree that scar tissue - particulaly scar tissue which is in the the process of  "bonding again" [forgive the non medical term - but after the number off surguries I have had that bonding [pulling into the actual new scar tissue as in the scaple site  .... is also relevant.

 

I might encourage you to just get the stoma area CT'd .... 'cause it may be a pocket of fludi ..... PARTICULARLY AS YOU HAVE PUT ON ANOTHER BAG THE OTHER SIDE - I SUGGESTED THIS SO YOU COULD SEE FOR YOUR SELF 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 strtches as such ....... have the water really warm, and then in veyr slow slow motion keeping your kegs straight and arms straight run them up to the celining and down to your toes - in a very slow repeated rolling movement.

 

IMO experience - particulalry when caerrying lettle fat - it is not always easy to 'feel' subtuaneos 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 luke warm or quite cool?

Also, after cleaning the stoma - when promoting it to 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 temperatiure [straight from your bathroom cupboard?

[When you have had your Salts 'sunburst' backing ones on, which are v.thin and finely 'spalyed' 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 perifferal Q's strange - but I ask as I use a variety of bags and sometimes separtae plates too ...... although generally, I am able just to wear the Salls 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 / harnesss .... 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 blow out - BUT THE BACK PRESSURE ACTUALLY CauSES THE STOMA TO BAK FEED AND AS SUCH THIS IN ITSELF HAS A 'Sucking' feel  [but then I have also different surgical layering too ..... but it is comcommitant with BACK PRESSURE! -

Your pain on straightening does sound like an internal adhesion kind of thing - UNLESS its back pressure against an internal fluid pocket [and it is a simple proceedure to have this "puctured" and drainined within radiology - they can guide straight it - and once drainined the intence local pain of the pocket area beneath the abdominal skin [feelis likeits in about an inch or so - depending on where the inflammation has gathed.  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 - an 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.

GOOG LUCK - Hope its just simply a process of maybe a little under weight stressing of suture sites - keep the show and gentle exercise  - it will help.

 

BW

 

Jayne

osto888
Reply to 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 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?

ricawatson53
Reply to osto888

I deal with the same. It disgusts me. 

Jayne
Reply to osto888

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 - nut usually, if one manages ones diet well , the BP clears quite fast - If it happens it is also helpful to massage, quite deeply around the stoma too - as thos promotes the peristalsis to kick in [rather like massaging in a foward movement at the sides under one's rib cage when one has indigestion - or indeed trapped air [prior to becoming a problem in small bowel that is - lol]

 

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

BW

J