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01-13-2016, 04:56 AM   #31
p2baa
 
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She was originally using a two piece ridged bag and they think she was cutting the whole too tight, and as it was ridged there was no give in it, so it was cutting in and that caused the original ulcer and then it just deteriorated from there.

She is now using a more flexible single piece. She preferred the two piece bag though, as she has really sensitive skin and she could change the bag, without keep changing the base plate and damaging the skin.

So she is between a rock and hard place really.
01-13-2016, 09:53 AM   #32
Grotbags
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At least you have an explanation so hopefully once it's healed up, there'll be no reoccurrence .
There is a one piece that has a manuka honey flange, you can also get aloe vera or manuka honey wafers, which might be kinder to her skin.
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01-13-2016, 03:21 PM   #33
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Hi glad you have finaly got somewhere with it. Hope all works out now. Best wishes to u both💕

Ye good shout from grotbags onthe honey n aloe wafers. 👍
01-29-2016, 06:52 PM   #34
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UPDATE: On Wednesday Sarah, had a massive bleed from her stoma which lasted all day. As a result, we had call the paramedics. When they arrived Sarah was very ill, due to the amount blood she had lost. They couldn't get a vein or even an artery so they had to drill a hole in her shin bone and infuse fluids through there.

In the end 6 paramedics attended the house and were working on her for over an hour, before taking her to A&E, where she had to get 4 units of blood and plasma. She also had an endoscopy and and CT scan. Endoscopy was clear, but CT showed signs of inflammation of the bowl, so they now think after nearly 9 years of no diagnoses that she has colitis. So while not ideal, it at least gives a reason as to why all this has happened to her.

So two days later, they still don't know where the bleed is coming from though it has slowed down.

01-30-2016, 01:07 AM   #35
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Aw p2baa im so sorry it has had to come to this b4 a diagnosis. My heart goes out to you n Sarah. Please give her my love n best wishes. I really hope that things improve greatly from here. Wishing you both the very best of luck. Keep us updated on how Sarah is doing. 💞💕
01-30-2016, 03:19 AM   #36
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p2baa im so sorry that this had to happen , im sending prayers and support. Please keep us updated how shes doing and i hope that they will get this sorted now. Best wishes to you and sarah
01-30-2016, 04:14 AM   #37
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Good grief that's terrible that it got so bad, hope she makes a speedy recovery.
01-30-2016, 12:09 PM   #38
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She was originally using a two piece ridged bag and they think she was cutting the whole too tight.
What likely happened is that blood flow was restricted by the appliance strangling the stoma with an opening that was too small. As a result the stoma was starting to die and decompose. This is a very life threatening situation that can cause uncontrolled bleeding or an runaway infection.

Over the 15 years I have noticed that my stoma grows larger over the years. I had to go up in size with my colostomy supplies a couple of times. First indications of an appliance being too small is that stool will often get under the glue holding the flange reducing its life time. The other thing is constipation caused by the narrowing restriction around the stoma.

I would suggest using a two piece system that is one or two sizes larger since the two piece system was what was preferred.
01-31-2016, 03:16 PM   #39
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Sarah, sending lots of prayers and good thoughts that you will heal and feel more like yourself, also hope that your husband stays strong! Please keep us updated!
02-03-2016, 05:18 PM   #40
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UPDATE... or maybe not...

Sarah has been in hospital a week now and we are no further forward to finding out what caused her massive bleed. On the plus side though, bleeding seems to have slowed down a bit today.

Sarah went for a flex sigmoidoscopy yesterday, but they couldn't complete the scope as she was full of poo (no change there... lol). So they tried to clear her out and then sent her back down today. Again the couldn't perform the scope because of the poo. So they are going to give her a 3 day prep, to try and make sure she is empty and then do it under a general anesthetic, hopefully sometime next week. However, Doc mentioned that if bleeding stops and Sarah feels well, then she maybe discharged and have it done as an out patient. I told the Doc there is no way Sarah is coming home until we know what has caused the bleeding, because until we do, then there is no guarantee that it won't happen again and I am due to be away with work and there is no way I am leaving her in the house on her own.

Also, her stoma has deteriorated significantly again. Looks like it has been eaten/rotted away. Just one wee lump of it left on the left hand side. And she hasn't even seen a Stoma Nurse since she has been in. I mentioned this to Nurse and Doctor today, but they are not the least bit interested and said it's all connected to the other problems.


02-03-2016, 05:19 PM   #41
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If you look at my post of the 29 Jan (post 34) and the one above, you can see the deterioration.
02-03-2016, 06:17 PM   #42
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Hell that looks awful must be quite scary for her too.
I guess they hope the Stoma will heal once they find out the root cause, and it hopefully will.
Fingers crossed it's fixed soon x
02-04-2016, 01:26 AM   #43
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Good on you standing firm with the docs. I know i would not want to leave my loved one on their own. Hold fast with that..
I so hope they can get to the root problem quickly. Sending love n best wishes to you both 💕
02-04-2016, 11:53 AM   #44
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That's scary. I hope this gets resolved quickly!

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02-06-2016, 06:36 AM   #45
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So Sarah's stoma has now completely deteriorated. Has anybody else experienced anything like this or this quickly?



02-06-2016, 07:16 AM   #46
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I've only had mine a year so not as experienced as some, but no, I've never seen anything as bad as that.
Would it be possible to get a second opinion ?, I believe you are entitled to one under NHS guidelines.
Can't believe they even suggested your wife could go home like that.
02-06-2016, 07:38 AM   #47
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http://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68
Seems it could entail a different hospital, but maybe that wouldn't be a bad thing.
02-06-2016, 12:06 PM   #48
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Yes go to another hospital right away, given the speed at which it is deteriorating. Can she pass bowel movements?
02-07-2016, 05:29 PM   #49
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I agree with Bufford. Try another hospital because this is just not right. Whats the latest they are saying ?. Love to you both 💕
02-08-2016, 02:00 PM   #50
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So managed to speak to a Registrar today. She said that they are not concerned with stoma and it looks worse than it actually is and it's still working with is the main thing. She also said that it hasn't totally "fallen off/deteriorated" and that it has probably just retracted and it's only the top that has sloughed off and that the pictures that I have taken probably give a false picture.

Sarah is due to get another test under general anesthetic this week which should give a clearer picture, but the impression that I was getting was that they don't expect to find very much and if it is clear then she can come home.

Told her I wouldn't be happy if that was the case as if we don't know what caused the bleeding, then how do we know it won't happen again. Just need to wait and see what the test reveals.

Anyway, between Friday and today there has been a further deterioration. But hey, it's fine, nothing to worry about...



02-08-2016, 02:04 PM   #51
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http://www.nhs.uk/chq/Pages/910.aspx?CategoryID=68
Seems it could entail a different hospital, but maybe that wouldn't be a bad thing.
Thanks. We will wait and see what the tests reveal this week and if we are still not happy we will go back to her normal hospital or ask to be referred back to St Marks.
02-08-2016, 02:16 PM   #52
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I would if your not happy after the results,depending on what they say when they come in,and what they plan to do or not do . Love n hugs 💕
02-13-2016, 05:32 PM   #53
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Sarah is still waiting on her colonoscopy under general anesthetic which should hopefully be happening on Monday, which will hopefully give us some answers.

As for the stoma, well there is something missing from this picture, but I can't quite put my finger on what it is...



02-14-2016, 04:15 AM   #54
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Sarah is still waiting on her colonoscopy under general anesthetic which should hopefully be happening on Monday, which will hopefully give us some answers.

As for the stoma, well there is something missing from this picture, but I can't quite put my finger on what it is...



Hi, I can't believe you still have no answer on what is going on. Have they given you no clue yet?. Is the stoma, or what is left of it still working?. I am so sorry you both are still going through this, hope they can sort this out asap. Best of luck for Monday. Love n hugs to you and Sarah
02-16-2016, 04:01 PM   #55
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So... Sarah had her colonoscopy yesterday and the doctor came to see her this morning. He said there is nothing "surgically or medically" wrong with her and she has been doing it to herself.

Bit of back story to this. Many years ago, when Sarah first got ill, this same Doctor accused Sarah harming herself and tried to blackmail her, by saying he wouldn't fix her unless she admitted to harming herself. Sarah wouldn't admit this as she wasn't harming herself. She was then referred to a psychiatrist who backed up Sarah.

Over the years, because of this Sarah has seen at least 5 different psychiatrists who have all said the same thing. However, this is not good enough for this doctor and got Sarah an emergency appoint to see yet another psychiatrist today. It's like he is going to go through every psychiatrist in the country until he gets one that agrees with him.

I tried to contact Exeter and St Marks today, but they weren't interested either, so we are a total loss as what to do next.

We have a meeting with this doctor tomorrow morning, but I know it's not going to achieve anything, as he has his opinion and we have ours.
02-16-2016, 04:12 PM   #56
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OMG WHAT!!! I cannot belive him.. as he has again threatened you with the psyhc route , id be tempted to threaten him with the sue him route. I am so so sorry for all you both are going through .This is crazy your wife is ill,has a stoma that is dissappearing from whence it came and this is how she is treated. Im outraged 😠
Much love to you and Sarah 💕💕💕
02-16-2016, 04:25 PM   #57
p2baa
 
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Thanks Mandy. Yep, she seen the shrink today.

We tried that the first time he said it as there were other issues as well (medical negligence), but it was just too expensive, up to 50,000 just to even get it to court and because medical negligence is so hard to prove, Solicitors wouldn't do it on a no win, no fee basis.

I have lived with my wife all through is and at no point has she given me cause to doubt her. I have seen the pain she has been in at home and I have tried to get her to go to hospital, but she wouldn't go, because of the way she is treated.
02-16-2016, 04:44 PM   #58
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Shocking and heartbreaking in equal measure
You could still report him without going down the soliciter route.
02-16-2016, 04:58 PM   #59
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Oh my heart bleeds for you both. It is a disgrace that you cant even sue them . Iv tears in my eyes writing this .. no wonder Sarah does not want to go. i so wish they would help her and take the responsability of getting her well again.
I believe you have no doubt of Sarah, as you say you are with her at home n know her better than they do.
I so hope you can find another doc n hospital who will be more sympathic and helpfull. Shame i dont see my gi till this time nxt month. I would like to show him the pics n see what he says about it. I would only do that with your permission of course. I will do so nxt mth if u have no resolution by then if you wish but i pray you have. Big hugs n love 💕💕💕
02-16-2016, 06:30 PM   #60
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Have they produced any evidence that your wife is doing this to herself? (other than not being able to find any other cause, that is)

I don't know how the medical system works in the UK but here in Australia there is general acceptance that a patient is entitled to a second opinion. Do you know anyone connected the medical field who could recommend a physician who might look at this from a fresh and imaginative point of view? I think that the Doctor whom you have been seeing might be so invested in his stated opinion that he is reluctant to look at any other options.
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