12-30-2015, 01:22 PM   #1
p2baa
 
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Stoma Help

My first post, so please go easy and apologies if this is in the wrong part of the forum...

My wife has a stoma and it doesn't look right. She has been to hospital and seen a surgeon (not her usual surgeon) and he said it did not require any surgical intervention and to contact Stoma Care. Stoma Care came and seen her while she was in hospital and all they did was change bag and said to put some powder on it.

That is not very reassuring, giving what it looks like. She then tried to contact her usual team today for advice, but they said they had spoken to Stoma Nurse that my wife had seen yesterday and they were happy that the stoma was ok and that they weren't concerned and as she had seen them yesterday, they were not prepared to see her today.

Now I'm no doctor or Stoma Nurse, but I know when something doesn't look right. Wife has posted a picture of stoma on a stoma Facebook page and they have all said that it doesn't look right and that theirs has never been that bad.

We are now stuck with what to do. Hospital want help and we don't know where to turn to next? Anybody got any suggestions.

I can post picture of stoma if that helps, but not sure if you are allowed to do that on here.

Thanks.
12-30-2015, 01:50 PM   #2
DJW
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Hi and welcome.

How long has she had her stoma?

If you are unable to post here the try posting in your photo album.
Just click on your name and you should find it.

If its new it will go through a lot of changes in the first year.
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12-30-2015, 01:55 PM   #3
p2baa
 
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She has had it almost two years, although it was a non-functioning stoma for a while as she had an Ileostomy.

Here are pictures:



12-30-2015, 02:03 PM   #4
DJW
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I see what you mean.

I'd be wanting answers if I was in your shoes also.
Can you email her regular team with the picture?
Is she in any pain?
Did they say what it was? Or the cause?

Keep pushing for answers. Hopefully someone from the UK will know where to turn.
12-30-2015, 02:15 PM   #5
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I see what you mean.

I'd be wanting answers if I was in your shoes also.
Can you email her regular team with the picture?
Is she in any pain?
Did they say what it was? Or the cause?

Keep pushing for answers. Hopefully someone from the UK will know where to turn.
Tried talking to the head of the stoma team today, but she was not interested as she said wife seen Stoma Nurse at a different hospital yesterday and she was happy with it.

She is in constant pain, but yes it has increased with this.

No, they have not said what has caused it. That's all we want, how to prevent it happening again and what can help with healing it.
12-30-2015, 02:17 PM   #6
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On the left hand side (right as you look at the picture), it is split all the way down. It is not connected at all. Easiest way to describe it, is that it is a C instead of an O.
12-30-2015, 03:08 PM   #7
Lisa
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I'm no expert by any means, but I didn't think a stoma is supposed to bleed? It also looks like she has ulceration on it? I am going to copy this post over to the stoma sub-forum so it gets more attention.

I would be pushing for someone else to see it and not take no for an answer. Can you see her regular surgeon?
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12-30-2015, 03:13 PM   #8
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Thanks Lisa.

Here are three pictures that I took of stoma on Monday, you can see just how much it has deteriorated in just two days.




12-30-2015, 04:05 PM   #9
Lisa
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That is NOT normal......it looks to me partially prolapsed and it sure shouldn't be bleeding!
12-30-2015, 04:32 PM   #10
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Oh no that does not look right at all. Go to A n E if need be that sometimes gets results if your not happy with what youve been told so far. I know i wouldnt be n would be pushing for some answers as to why it looks that way. Best wishes. 💕
12-31-2015, 04:06 AM   #11
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I'd head to the hospital. That isn't normal at all. There's blood loss and possibly dead or dying tissue based on the color. This site mentions various complications: http://woundcareadvisor.com/understa...ions_vol2-no4/

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12-31-2015, 02:13 PM   #12
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So emailed pictures of stoma today to the Stoma Care team and they are still not interested. My wife has just cleaned her stoma, so I took the opportunity to take another picture and I think it has deteriorated since even yesterday (thoughts?), but she is refusing to go to the hospital because of the way she has been treated and also because of the holiday. Has anyone had a stoma looking this bad and if so what did you do?

Thanks.

12-31-2015, 02:17 PM   #13
fuzzy butterfly
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Please convince your wife to go to A n E im concerned about this it could be going gangreenous. Please get to hospital. I hope im wrong but i wouldnt leave any longer. 💕
12-31-2015, 02:20 PM   #14
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Ps show them these messages if u want so they know its not just u who thinks its not right ...
12-31-2015, 02:25 PM   #15
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Thanks, she is pretty adamant that she won't go, so I have told her if it is worse again tomorrow, she will have no option.

I can understand why she is reluctant to go as the way she is treated is terrible.
12-31-2015, 02:28 PM   #16
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I can understand her reasons. I think your right tho if any worse go tomorrow defo. Is there any smell with the stoma ? 💕
12-31-2015, 02:30 PM   #17
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The smell is awful, but just put it down to poo.
12-31-2015, 02:32 PM   #18
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Ok its just that gangreen has a bad smell to it. Im going to see what i can find out for you. Be back in a bit. 💕
12-31-2015, 02:57 PM   #19
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Ok i cant find much out im afraid.. tho the gangrene seems to affect feet n toes most so may be wrong there..
i still believe someting is severely wrong tho. Hope you can get the help you need. Be firm n stand your ground if you go to the hospital. Dont let them brush you off till you know what the heck is going on with your wifes stoma. Best wishes to you both 💕
12-31-2015, 03:45 PM   #20
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I thought I had typed out another reply....

There is the possibility it could be pyoderma gangrenosum...which needs attention before it gets any worse!

Tagging Dustykat, tubes and incognito ....
01-01-2016, 02:16 AM   #21
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Pyoderma Grangrenosum is normally a condition associated with the skin, so most find it is the skin surrounding the stoma that is affected and not the actual stoma itself. Since I am no expert though I wouldn’t rule anything out.

Your wife has an infective process going on there and it needs to dealt with ASAP. Why does your wife have an ileostomy? If you have a gastroenterologist go straight to them. Bypass the surgeon as it won’t be their domain unless surgery is again required. The stoma nurses, well if they think that what is occurring is not an issue then we are residing on different planets.

Think of it this way: The gastrointestinal tract is not a sterile environment, hence why they can take a piece of bowel and expose it to outside world, otherwise known as a stoma. The bowel wall is that barrier between the sterile and non sterile environment, once that wall is breached then infection will set in as the material passing over it, faeces, is loaded with bacteria. It matters not whether the bowel is in the body or outside of it but as you can imagine the very nature of a stoma, and especially an ileostomy, means it is surrounded by faecal matter much of the time.

It would appear that by whatever means…trauma, disease, etc…the bowel wall of the stoma has been breached and infection has set up shop. You can see the process as your pics have progressed…
As the infection takes hold the healthy bowel tissue becomes swollen and engorged causing it to become fragile and bleed. Then as the infection progresses you have tissue breakdown and the appearance of pus as the area is flooded with white blood cells and their eventual demise and breakdown as they attempt to heal the wounds.

I can well understand your wife’s reluctance to seek help when you are repeatedly told there is nothing wrong BUT the only thing normal about the stoma is how the infection is progressing, I’m sorry to say that nothing else about it is.
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01-01-2016, 06:16 AM   #22
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That does not look good i do not have experience with this but i would go to the er straight away and demand they do something. Please keep us updated and wishing you and your wife well
01-01-2016, 08:03 AM   #23
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I agree with all those saying that it does not look normal for a stoma - a healthy stoma should look bright red and glistening. If my stoma started to look like this, I would be pounding on someone's door until I got some attention. It is not the bleeding that would worry me the most - stomas can bleed quite easily - but the ulceration or whatever the infection is.

I do not understand how the Stoma Care team could be unconcerned about it. Please persuade your wife to go to see someone as soon as possible.
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01-01-2016, 09:04 AM   #24
p2baa
 
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Just returned from the hospital, went to the Emergency Department and they said although it does not look right and does need investigation, as wife's other obs are normal, there would be no point in admitting her as she would probably not been seen until Monday due to public holiday and weekend. So it would be better for her, if she thinks she could manage at home and then chase it up next week.

Thanks for your help.
01-01-2016, 09:08 AM   #25
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Hi well at least some medic agrees its not right. Please do chase up on monday tho. I know its hard for your wife after how she has been treated but you both need to be firm with the docs n say you want n need help. You are entitled to help so make sure you get it. Keep us updated plz. Best wishes 💕
01-01-2016, 12:16 PM   #26
Christi
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I do hope they gave her some meds, i agree with mandy they do need to help you and if it gets worse i will go back even if its weekend or holidays. This does need to get checked out and they do need to do something. Prayers and support
01-12-2016, 03:05 PM   #27
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I'm appalled that nobody on your wife's Stoma team is taking this seriously.
The nurses on my team told me if there are any changes in the colour of my Stoma at all, I should make an appointment as a matter of some urgency.
Really hope she's gotten some treatment by now .
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01-12-2016, 07:23 PM   #28
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She went to her GP on Friday who sent her to hospital. She seen the Colorectal Surgeon. She had a scope down the Stoma on Saturday and there is a wee bit of ulceration below the skin also, but Surgeon is not concerned about state of stoma.

She is just to continue using the stoma powder and they are leaving it to heal naturally, which will take a long, long time.
01-12-2016, 11:36 PM   #29
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Did they suggest what caused the stoma to be in its current condition? That would still be a concern for me.

I very much hope that, for your wife's sake, healing will occur sooner rather than later but I think that you should institute a regime of visits to stoma nurse/s so that she/they can keep a record of the progress.

For your wife
01-13-2016, 01:21 AM   #30
fuzzy butterfly
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Hi ye i agree with Susan. Keep a very close eye on things n keep on at the stoma nurses to moniter the stoma. Best wishes to you both 💕
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