Stoma skin problems – WARNING Graphic images
I have had some issues with my Stoma post surgery. The stitches came away from the skin leaving me with a large hole into my stomach.
It was bloody awful to look at, it was really nasty and made me queasy. I documented the healing process though as in the beginning I couldn’t imagine it getting any better.
Be warned that the images in this post are really quite graphic. If you don’t like images of open wounds and stomas, I really wouldn’t bother with the rest of this post!
The reason for this post is not to shock but to teach and comfort anyone who has had this happen to them, when it first happened to me, I panicked and was really upset and terrified. I could see into my body!! I spoke to my stoma nurse (and I 100% recommend that you speak to a medical professional if you are having any issues!!!) and she told me that it wasn’t that rare, that I needn’t be too concerned and that with treatment, it would soon be sorted.
I used a paste to fill in the hole, it was the Convatec Stomahesive paste that does really sting for the first few seconds when you apply it, but it does the job. It fills the hole so poo can’t get in and then heals it from the inside out.
Apart from the obvious need to heal the hole, what is important is that when you have a would like this, it stops your bags from sticking properly and when you don’t have a well fitting bag, you get extremely sore, wet skin which in turn, further stops your bag from fitting… It is a vicious circle that is miserable as if you don’t have a well fitting bag, you get leaks and leaks stop you from living a normal life.
I feel I have given enough warnings now, the photographs below could be upsetting if you don’t like seeing inside a body!! So scroll down if you want to see the healing process and I really hope it helps.
*FINAL WARNING*
Day 1 – 15th January – the stoma has come away from the skin. You can see the stitches still surrounding my skin.
Day 3 – 17th January – you can see it has got worse here, this is before any treatment. You can see right inside here!
Day 5 – 19th January – I had been using the Convatec Powder but it wasn’t really helping.
Day 7 – 20th January – it was really bad here, though the wound is starting to heal from the inside, you can see how my bags haven’t been sealing properly and therefore the skin around my stoma is blistering and burning. This is from my very acidic poo getting on my skin and burning away at it.
Day 8 – 21st January – still really bad! Those open burns and blisters are extremely painful. I saw my stoma nurse on this day and she wasn’t happy with the powder treatment and started me on the paste.
Day 11 – 24th January- after just three days using the paste, you can see the VAST improvement. The wound is healing and you can see that my skin is healing too. The paste goes around the stoma and fills in the hole, it means no poo can get on my skin. You can also see that the last of my stitches have dissolved or come out.
Day 14 – 27th January – my skin is almost completely healed after 6 days using the paste and you can see that the wound is almost completely closed.
Day 21 – 3rd Feb – after another week using the paste, my skin is healed and the wound is well on it’s way to being filled and healed!
Day 23 – 5th Feb – another two days and it is pretty much there!
Day 29 – 11th Feb – the wound is completely healed though my skin is still slightly discoloured. You can see how well healed the rest of my skin is as my bag is fitting perfectly and so I am having no seepage or leaks.
*********************************
So there we go, that was my process from wound opening to healing. As I said, I have shared these photos and this post to help anyone going through skin problems and so I hope this has been of use. It can be extremely scary when things go wrong and I think it is good to see other people’s experiences so you can see there is light at the end of the tunnel.
Don’t forget that your stoma nurse is the best port of call for any stoma issues, they have seen it all before and will have treatments and solutions. My first treatment didn’t work for me but the second was brilliant, my stoma nurse told me there were more things to try if it didn’t work though.
I hope my openness helps everyone with a stoma to not worry, not be embarrassed and to speak out and get help if you have any issues. And for all you who just wanted a gawk, I hope you enjoyed it!!!
Sam xx
Sam, I ‘complained’ to my surgeon about the ‘too big’ size of my stoma. Over an inch sticking out (at largest). Certainly much bigger than yours. He was adamant that it was ‘about right’.
(Assuming he was right) – my logic goes that a small one (yours) can hide inside the bag and get crap more easily onto the skin?
Does that make sense?
Are there any guidelines?
Just curious..
Glad your ‘wound’ is healing nicely. Keep on the mend!
My stoma nurse says she would like to see inch long stomas as standard as they are far better behaved and you have less leaks. She said mine is very flat, I am hoping that as the swelling goes down, it will stick out a bit more!
My mother in-law is having a horrible time with her stoma its over 5-6 inches long & I think she has a parastomal hernia!!!! I’ve been taking care of her & her stoma since November& instead of getting better its getting worse & her drs won’t tell her sh*t!!!! Its so frustrating when noone will answer our questions!! Every time I’ve asked about her rectovaginal fistula its like talking to a brick wall!!! But I’m glad u had a batter outcome than my mother in-law! Bless both of calls hearts!!!
I use Cavillon barrier wipes to protect my skin from the poo. Mine was very bad and nothing would stick since all it did was bleed and weep. It looks so much better now and feels better. I am glad you are getting better.
Wow Sam, I’ve only had my Ileostomy for nine months I don’t think I’ll complain about the sensitive skin issues around my stoma ever again! It looks so painful. My stoma (named Twango-like Rango, but Twango because he stinks) hurt just looking at it 😉 I’m glad its getting better! 🙂
PS-You’re awesome! xo
This post is great and honesty shows the struggles with peristomal skin! It’s a nightmare. I also used that paste and found it help heal everything! I still use it now even on little cuts and things. Seems to work wonders. Hope having your bag back again is all going okay xx
What is the name of the paste you use?
I had the operation over2 yrs ago and my stoma still hasn’t gotten better. I’m sorry to bug you but you seem to know more than my doctor,, I’m scared to have the reversal.im bedbound and the stoma looks like raw hamburger meat I don’t think it’s supposed to be like that.i can’t use the pàste it burn like fire..i. Use sureprep and powder..
It doesn’t leak but when I change the bag it’s still hamburger meat.this has been going on for over 2 yrs.pls tell me Something about this, what should I do!!!!! GOING Nuts!!
You’re totally right (and awesome) for posting this and I hope anyone struggling with their recovery sees this and it helps them feel better. As always, you are doing such a great job of educating your readers and providing people with IBD and stomas valuable support. Glad to see you are on the mend and continuing to be so bad ass!
I am so happy to have seen your horrible photos. It has helped to give me hope. My stoma looks like your Day 3, January 17 except that there are two spots like that. I’ve been using powder but will definitely try the paste. I honestly was thinking there was something very very wrong with this stoma. It feels good to have hope rather than fear. Thanks to all the people out there who share!
Hi out there, my partner has been given an option either to have this operation or wait and see as one of his polyps was 4.5 cancerous. He is to have MRI and a Pet CT Scan and from there we will be deciding which way he will go as it is his decision. I would like to hear from people who chose not to have the operation also please and also those that did go ahead with the operation. Mainly I would like to know how couples coped throughout this chapter in their lives. Have a blessed day.
Hi there, I have had the operation and was only thinking this morning if I had the choice again I would have opted for chemo first. I have a stoma which can be reversed but they say a year due to the back log.
Also, my ureter was cut ny mistake and had to have a catheter for 2 weeks which was ok but I have a large scar where they had to cut me open!! My tumour was blocking my colon and was very close to the ureter.
I am now having to go back this Wednesday to have my stent removed which I was unaware of!! Received a phone call last Monday advising me of this!! Still recovering and unsure when/if I will ever get back to normal.
I collapsed and when I eventually woke up my husband told me my bowel had burst. I’d been very ill
he said the doctors had said that nature would have to take it’s course unfortunately I woke up. I wish I hadn’t.
The stoma is disgusting and it makes me even more disgusting looking. I wish I’d died. No-one would care. or even know as we have no friends.
Oh Clare, I am so sorry you feel like this. Has this been very recent? I hope you can get some help and support to deal with what is going on, are you in the UK? Can you see your GP about how you are feeling? I would care and I have never met you Clare, it is sometimes hard to see the light when we feel so down but you are worthy of life and I beg you to seek help.
You can call and speak to the Samaritans if you ever feel suicidal, if you ever feel you are in immediate risk of self harm, then please do go to A&E.
You aren’t disgusting Clare, you are a survivor xxxx
I feel about the same this thing is horrible iv been lucky as far as any problems, yet. Except it hangs out different lengths at different times I wash it soap water hope it stays good but when I woke up I felt the same way I also had a nasty cut from my sterem to top of my dork that was left open for healing purposes but im with you on how it makes me feel I to the point that I don’t care anymore I do things im not supposed to I just feel like it will be the death of me I was a healthy man when this happened I spent 7 weeks in hospital no real food lost 40 lbs now I feel like a febel old man i never wore a shirt in summer but now have to its imbarrsing my quality of life has went down God has been good to me but did I deserve this everything I worked for this past year has crumbled my feonsa ..my welding shop .. I feel as though wish I was gone also I don’t know why I dumping all this on this site I just seen where you feel like I do im still struggling with accepting this I don’t empty any bags I just tear the used one off and put on another I think by doing this the smell everyone talking about isn’t there but your friends and family say it nothing not that bad but I feel like every one has there own ickey feeling about them I know I did but would never tell so when im around them I feel as i know what they thoughts is on having a shit bag I hate everything about this thing hope you get a better outlook and just wanted to say you’re not alone in the way you feel gn smitty
I feel hang in there is does suck I’ve had 2 ileostomies since june looking at a third coming up in may. My life has been taken from me and people just don’t understand. My kidney’s dropped to 40% so now I’m going for fluids every week to see if I can get them back up. I feel like you and I wish I would’ve never started this process. What life I had is gone. I’ll I can say is try and hang in there it’s a day by day process. Good luck I hope you get stronger.?
Julie
I had a burn all around my first ileostomy. And they gave me steroid liquid which burned even more. My first was placed to close to my rib cage so with that and the stoma retracted and I was changing my bag alot. I’ll i can say is if u don’t trust the dr. Get a knew one I’m looking for my third one after my second stoma is retracted and I have to self dilate it to keep it open and functioning. Good luck and best wishes and prayers are with you.
Hi Clare, I’m so sorry you felt like this. Would love to hear how you are now?
I’m just recovering from bowel cancer.
Jo
My sister recently had surgery to remove tumor from colon & now has to use colostomy bag. She does not habe protruding stoma. She has what looks like a knife stab slit about one inch in length. The slit opening is placed in the inner fold of a roll of fat. Bags do not stay attached! The feces leaks out of slit directly on to her skin. Her skin is beet red and she is in constant pain. Her surgeon says it is fine. The home nurses say they have never seen anything like this no-stoma opening. My sister has been treated so many times in emergency room for skin infections & pain. She has started chemo treatment so surgery to re-do stoma is not being considered. Hoping someone can give me suggestions.
This sounds very odd! You need the ‘spout’ of a stoma to direct faeces out of the body. I would ask for a second opinion asap!
We are facing the same problem! My friend has what looks like a knife wound with her stoma “inverted” to the inside. She can’t keep bags on, her skin is blistered, and she’s in terrible pain!
I have an ileostomy and I have a large hernia around it! I’m putting on up to ten bags a day because of leakage on to my skin which burns! I have tried everything and nothing works do I can’t understand what you are going through!
Julie
I had a burn all around my first ileostomy. And they gave me steroid liquid which burned even more. My first was placed to close to my rib cage so with that and the stoma retracted and I was changing my bag alot. I’ll i can say is if u don’t trust the dr. Get a knew one I’m looking for my third one after my second stoma is retracted and I have to self dilate it to keep it open and functioning. Good luck and best wishes and prayers are with you.
I had rectal cancer , after chemotadiotherathy together it dissapeared so had a choice sit and wait it’s called . Scans every 3 months . I decided to “sit and wait “ . The year after it spread to my lymph nodes in right groin so had the row taken out and was left with lympodema and more chemo .The year after it decided to make an appearance again in my bottom so had no choice but to have an APR to remove bottom stitch it all up then stoma it took 8 and half hours to do the op then more chemo . Phew it’s taken almost 4 years but now had the all clear . My stoma ( beryl lol ) has been fantastic and had no problems I guess I’m teally lucky as it’s been 20 months now altho I’m seem to be getting a lumpy fleshy thing growing actually on the stoma side and it’s growing ! So going to ring stoma nurse ( for the first time ) I’ll let you guys now how I go on . Reading some of these stories sucks keep positive and I wish you well ? xx
I have an overgranulated piece of skin on the side of my stoma which is getting worse so sosore and bleeds! Been to see my surgeon stoma nurses doctor a and e doctor and no one will help me!
Name of paste PLEASE
Stomahesive which is put out by Convatec.
My stoma is now 30 years old. Ostomies are not given out as often as they used to be, and I’m treated like a rarity. Where I live (Florida) the medical knowledge is deplorable. I now have black, shiny, “non” skin around my stoma, from stoma to about one inch in a complete circle. The best medical advice I’ve gotten is “I’ve never SEEN anything like that!” All I know for sure is it’s not fungal, bacterial and looks like black saran wrap. I’m thinking it’s more of a “bed sore”, pressure wound from wearing a convex wafer for 30 years,. I do not use anything on my skin except for the wafer, and since nothing wants to stick to the shiny skin, I get 3 days wear time.
Yes I have got that as well because of using convex bags fir over ten years
Hey y’all, mine gets so irritated because it gets on my skin and has become very agitated, it burns something awful. But I read today that raw honey is used to cure ANY wound, and read up on it, all great testimonies, gonna get some today and try it. Look up benefits on this
I’ve had mine for 4 yrs. Real bad placement of the stoma. Right the fold of the stomach. Mine became inverted within the first 2 days. Has changed shape from 1 1/4 in to 2 3/4 in. It’s ALWAYS saturated with blood doesn’t let the bag stick to my skin. Chunks of flesh come off with the tape I use. Wish I could upload pictures.
You need to call your stoma nurse!!!
Try raw honey. I just read that you can heal any wound with it. I’m gonna try it today
Hello… I have had a colostomy for 2 1/2 years. I have gone through the bloody stoma surround. I found out I was sensitive to the adhesive and through trial and error finally went with holister’s cera pur and it is much better. (I have a very flat stoma)
Now I have a problem with a very protruding area around the stoma. It looks like the size of a small beach ball and I can only get very few clothes on. I’m getting afraid to eat and wonder if anyone else has this?
It sounds like it could be a parastomal hernia, please do go get and medical advise on this!!
I have had my stoma for 2 years now, I use Appeal Hydrosolve adhesive removal wipes when I’ve cleaned the soma with lukewarm water after cleaning around it after my bag removal, I clean with Non Woven Fabric swabs. Touch wood no problems so far.
I think you need to have that checked! Sounds like a hernia
I’ve enjoyed your post.hoping they will help me .my ostamy is very sore raw.bleeding.tiny blisters.i need a ostamy nurse.?how do I achieve this .thank you each and every one .mary
I operate in 2015 now around the stoma somany poo is there.i am useing coloplast Ostomy powder.But no relief onstoma.which cream can I used ?
Hi I’ve just purchased a tube of this stoma paste ( convatec paste ) how do you apply it to the wound of my stoma after having a infection which has caused to holes the tube I have received is all in Spanish instructions.
My ileostomy is 10 years old. I have the same problem that you all have. Sores seepage etc. my nurse took a swab of my sores and wrote a prescription for
Keflex. It helped with the healings but unfortunately it comes back about twice a year At first i was very bitter about my body. I had my vagina removed too due to cancer. Now I’m very thankful that i made it through. I now have a great grandson that I would never have known had I had my wishes granted after surgery. God is good
March 5, 2019 5 hour colon/colostomy surgery, ugly long scar, in hospital 24 days, transferred to nursing home for rehab and recovery for 2 months. Developed hernia soon at the nursing home. Trouble for incisional healing, 4 transfusions in hospital. Now after many months I feel something went wrong during surgery. To this day, I do not feel even half-way recovered, legs weak, requiring daily naps. Yesterday my caregiver, LVN noticed a teensy hole next to the stoma, after all these months. Have appointment today with primary care doc. Thank you for listening.
I have the same problem but min e did not heal I have a permanent gap between my skin and my stoma .I have a loop ileostomy now my stoma has shifted now part of my stoma is In the gap and it empties into the hole spots always burning g and causing leaks I am at the point were I change my bag on average 7 times a day I have had my stoma for over a year now thanks for letting me vent
I’m in a similar situation. My loop ileostomy points diagonally and the skin on one side has pulled away. I’m currently putting a wafer over it but it just doesn’t seem right and now I’m still getting output under it. I had asked my surgeon about it but he didn’t want to close it up. I don’t have a specific ostomy nurse, so it’s frustrating.
I noticed a small slit under my soma that was leaking poo, not too serious…yet I know it is of concern as skin around stoma is irritated. That goes with the territory. Thanks for your help I appreciate your photos & advise have helped many including me.?
Hi Sue, you should get that checked out. Good luck x
I have an ileostomy my stoma sits down below the skin about a half an inch. I always have problems with skin irritation. And leaks are a problem. I have skin crease on both sides of the stoma. Have to use stick paste to fill in. Then I have an ekin ring over that.. and then a convex ring on that then the pouch. Maybe if I had surgery to bring the stoma up above the skin it may be better. Any thoughts anyone?
Im not sure how likely it is that a surgeon would agree to resite your stoma without strong medical reasons but you could ask their opinion? Are you in contact with your stoma nurse? Do they have any other suggestions? Best of luck to you x
I’m eight years into my ileostomy. My stoma has increased in size due to a hernia. Having trouble finding a wafer large enough to fit its extra large size. Currently use coloplast one piece. 3” max cut. Not really large enough. I fear I may need another surgery?any other product out there that will give more comfort?
Have you spoken to your stoma nurse? I think Clinimed have some bags that have large openings, check here https://www.clinimed.co.uk/stoma-care/products/ileostomy-bags/aura-convex-drainable – they also have a phone number so you can speak to someone – 0808 1596 017
I’ve only had my stomach for about a month I’m getting a lot of the irritation around my skin kind of like the pictures not sure exactly what to use to heal them up I also had a lot of the feces go up under my bag that was supposed to have been stuck to my skin I’m not sure if that’s called leakage or what really looking for help and answers
Hi there, yes it is a leak and will cause the irritation on your skin. Do you have a stoma nurse? They would be the first port of call to get a bag and a fit that works for you. Good luck!
I do have a nurse I have contacted but this is really freaking me out and my end serious danger when it leaks I can’t seem to get the whole around my stoma right because it keeps retracting.
Leaks are really upsetting, I totally understand that. It can take a little time to find the right bag and fit for you but you will get there. Speak to your stoma nurse and let them know that you need more support with this x
I try to fit my stomabag and it seems right but then when the stoma pulls in there’s a large gap where the waste matter then sits and burns my skin
I tried to wear a abdomen belt not knowing that I wasn’t supposed to abstract my stoma.
I thought everything was okay until about an hour ago I got a lot of pain I went to check my stoma and it had retracted and there was feces all under my barrier around the stoma now I can’t seem to get the circle to fit right it keeps retracting what should I do
I do have a stoma nurse but once it leaks will it continue to leak?
This is really freaking me out I’ve changed my two-part bag and tried to fit the hole as tight as I could but my stomach keeps retracting. What can I do in the meantime while I’m waiting to hear from my nurse.
I found your post about a week ago. I too have raw, bleeding, & painful skin around my stoma. I’ve had this issue for about 2 1/2 years. I’ve tried many different products recommended by my wound nurse. I’ve even had to use Silver Nitrate sticks to ‘cauterize’ the raw skin (which is indescribably PAINFUL). I’ve ordered the paste you recommended & I’m about to try it out. I hope it works as it did for you! Thank you so very much for sharing your story.
Hi Melissa, can you post an update with the name of the paste & how it worked for you?
OMG. My DH is considering a Colostomy due to years of rectal pain that is responding to nothing! Including nerve blocks. I read the horror above; there seems to be LITTLE competent medical backup; we are scared.
Good strengths and abundant courage sent to all the commenters above. You are brave. Have faith in whatever your spiritual beliefs entail. KNOW…that you ARE strong! You have to be. Sometimes, life gives us no choice.
Danielle
Thank you so much for this?
,I’ve only had my urostomy stoma for three months. (I named her Burpa because she’s so rude). My stoma is flat under my skin and only protrudes when she has something to do. Other than that, it weeps and leaks urine that gets under my wafer despite that it’s a convex wafer with a moldable barrier underneath the bottom of the opening.
I’m going to try that paste and hope it helps with the burning and skin disruption.
Again, thank you
I HAVE HAD TWO STOMA OPERATIONS THE FIRST ONE MY MUM ELIZABETH NANA HAASTRUP CHANGED THE SAME BAG AND THEN I MOVED UP TO DARLINGTON AND THEY DID IT AGAIN AND STARTED ARGUING WITH ME AND SAYING THAT IT WASN’T THE SAME ONE BUT I SHOULD KNOW WHAT I HAD DONE YOURS FAITHFULLY MRS ADEBIMPE ADEFUNKE METCALFE
I have a stoma in July this year and its out near my bellybutton and nothing will stick it leaks and my skin sore and red i been on to the stoma nurse waste of time I have to pack it myself but still leaks out
Thanks
Im sorry you’re having a tough time. If you aren’t getting the help you need from your stoma nurse, please see your GP x
Hiya, my stoma looks just a bit worse than yours, hope after reading this I can sort it with some paste.
KR chris
I went to the Midwest back in June to for graduations and wound up with a Parasite. While in the hospital after coming home, they ran tests on me to find why I was so sick! They found the parasite but in running all the tests, they found cancer at the rectum AND a bad heart valve. I was adamant about not having a bag hanging on me for the rest of my life. After much prayer I gave it to the Lord and agreed to the surgery. In less than 2 months’ time, the cancer went from the size of a marble to7 3/4 inches long up the left inner wall of my rectum. I didn’t really have much choice as this type of cancer couldn’t be stopped with Chemo or Radiation. The doctor told me it was a one off kind of cancer that he hadn’t seen in thirty years. My surgery went well. Good stoma, good doctor and great nurses. My only problem is the ITCHING. There are good stories. More should be posted to uplift those thinking about having the this done. Many are living today because of it! I am one of those!!!!!!!!!!!!! PTL!
I have a stoma first was a illestomony then they was going to reverse had a o stony bag then dr said as I did not want this they would reverse after four month I waited patiently then they wouldn’t reverse then I found out they cut my bladder open I have pee problems now leaking I also wear pads dailey I’m in pain after all the radiation the pedenual nerve is messed up they cannot fix that cause I have a torn fistula into my vaginal I wanted to die I hurt so bad I do not know why they did this to someone they should let me go I asked to I didn’t tall them to do this surgery at all now only place is Canada that can they say fix the pain and guess what I don’t have all this money to go there I’m up shit creek
Im so sorry you are having such a difficult time x
My stoma is oval and is actually flush with opening or below the opening. Can’t get pouches to stay longer than 36 hours, skin very sore and raw, spent week in hospital due to it. Very frustrated and emotionally drained. Help
I am struggling to keep pouch on. Went through 7 pouches in 12 hours, waiting for wound care nurses to call me back as well as home health, very frustrated and emotionally drained this has been issue since surgery. My stoma is oval and under the skin makes it more difficult to keep pouches on.
Do you see a stoma nurse as well as a wound care nurse? Coloplast have some great info and some self assessment tools here – https://www.coloplast.co.uk/stoma/coloplast-care/ – but know that this isn’t normal and you need some help in resolving whatever the underlying issue is. Best of luck x
Sprinkle stomahesive power on your skin and brush it off lightly to remove excess. Then use a barrier spray on your skin over the powder and surrounding sking before sticking on the flange.
Hello all! On one hand I am so sorry to hear of all of the issues everyone’s having but on the other hand I now know I am not alone. I am brand new to the ostomy club, barely 2 weeks in. My concern is around the outside of my ileostomy it almost looks like there is puss. I have had a nurse come to my house and she says it is undigested fat??? I have tried wiping it away and it come right back. I have no fever no pain and it seems to otherwise be working normally. Has anyone had this issue and what was your outcome? I don’t know if I am being over parinoid?? My surgeon is almost 3 hours away so just stopping by isn’t so easy. I am going to email her but wanted input from fellow stomaites.