Stoma Help

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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.
 
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.
 
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:

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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.
 
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.
 
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.
 
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?
 
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.

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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. 💕
 
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.

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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. 💕
 
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.
 
I can understand her reasons. I think your right tho if any worse go tomorrow defo. Is there any smell with the stoma ? 💕
 
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. 💕
 
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 💕
 
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 ....
 
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. :eek2:

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. :ghug:
 
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
 
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.
 
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.
 
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 💕
 
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
 
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 .
 
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.
 
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 :hug:
 
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 💕
 
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.
 
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.
 
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. 👍
 
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.

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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. 💞💕
 
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
 
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.
 
:hug: 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!
 
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.

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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.
 
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
 
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 :hug: 💕
 
So Sarah's stoma has now completely deteriorated. Has anybody else experienced anything like this or this quickly?

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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.
 
I agree with Bufford. Try another hospital because this is just not right. Whats the latest they are saying ?. Love to you both 💕
 
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...

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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 💕
 
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...

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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...

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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 :hug:
 
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.
 
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 💕💕💕
 
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.
 
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 💕💕💕
 
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.
 
I would confront this doctor and literally crawl up his backside telling him in no uncertain terms the situation and put the fear of god into him. He has been unprofessional, shows no honor whatsoever. To say what he did is based on his own opinion and not facts, that in itself is malpractice. These kinds of doctors should be routed out of the system as they will only victimize other patients.

My advice is do not ever go back to that doctor and find another as soon as possible.
 
Hi I agree with Bufford, and I think you should report this to the Pals department of the hospital and if you wish to the GMC, it is beyond belief how your wife is being treated, sending love n hugs 💕
 
I am in total shock.

That stoma appears to be very unhealthy and in need of revision. I cannot believe what you're being told. Is the UK so far behind us in treating these diseases?? I've read horror stories after horror stories...blaming the patient, wanting the patient to see a psychiatrist, patients harming themselves. What is wrong with these doctors???

This is beyond shocking. The whole thing reeks of malpractice and negligence.

Poor you two. I don't know what to say. I will, however, pray for you both.
 
I wish you two could come to the states. I wish you could see my GI. When I had my surgery, within 2 hours post op, it began turning black..and inside of a week, I was back in surgery for a revision. It had fallen apart. I do not like the looks of those photos. She'd be in surgery in a heartbeat here, I imagine. Just my opinion. It just looks very unhealthy and it doesn't look like any stoma I've ever seen.

Bless you two and what you're going through. Please give Sarah a hug from us. Let her know we're thinking about her and we're on her side.

I just can't believe the trials. I can't.
 
Hi salad, the uk is not so behind in treating crohn's as such. Unfortunately Sarah has copped for the worst doctor I've ever heard of by the sounds of it . I can't believe what they are being put through it's a crime in my eyes. You know what if I lived closer I'd go see that doc and give him the riot act, boy would I rip him to pieces. I'm so furious with how he is treating Sarah 😬
This situation has me in tears at times and in a rage times.. Arghhh
💕
 
But, this is the third post I've read on here where a doctor in the UK (different doctors) are turning away really sick people, saying it's all in their head and they need a shrink....OR they are doing it to themselves.

I'm fuming. I agree......tears/rage/argh
 
Oh ye it does happen. Unfortunately,and in all countries from what i can gather. It could be time for the people to revolt,then maybe things will change. It is so infuriating ...why are people like him allowed to practice,should be struck off..😠
 
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This is not fair and i will not leave it there, docs like that dont deserve to be there. Im praying for you both. That stoma arent even there really anymore. Take it further and find someone else
 
It might make you feel better but there is absolutely no point in taking out your anger/concern/frustration/disgust on the doctor. The best thing to do is vote with your feet - go somewhere else. Write a letter of complaint, if you like, but it is far more productive to pour your energies into finding someone who will take a fresh and unbiased look at the problem. Fight the battles that are worth fighting at the time. It might seem unfair, but the last thing you and your wife need is more stress.
 
I'm just now catching up on this thread and I'm having a hard time believing that all of these people at that hospital think that her stoma looks fine and that she's doing this to herself. HOW????

That stoma looks like it needs to be redone and that may be causing the blood loss. I haven't had a stoma but I did have to have a large wound packed for a month so it could heal from the inside out. Tissue that isn't covered with skin bleeds really easily so my guess is that the swollen/irritated stoma is what's making it constantly bleed. There could be another cause but that's what came to mind when looking at the pictures.

I'm not really certain how things work in the UK but is it possible to go to another hospital when you're on vacation/holiday? Would it be possible to just go for a drive and then suddenly need to go to a hospital while you're away or would they really make you drive back a few hours to go back to that garbage one she's at now?

Also we do have a section where you can rate/post a review of your doctors so you're welcome to share any info about them on the public forum: http://www.crohnsforum.com/forumdisplay.php?f=79

This is the type of thing that almost sounds news worthy. I wonder if it's possible to contact a local news station about it if they simply release her and do nothing for her. Leaving her like that is dangerous and they should be reported.

I'm so sorry she and you are going through this. This is horrible! :(
 
Wow! I've just been reading this thread and I am totally appalled. It's a long time since I was a nurse, but the wound breakdown process is so obvious it is disgusting that you have had so little help or compassion.

I would also really like to make it clear that this is by no means representative of normal NHS treatment, and this doctor - and the stoma team - have handled things incredibly badly.

You have every right to change your doctor, even if it means walking off the ward and heading to a different A&E.
First, get talking to the patient liaison service of your hospital with your complaint and ask if you can be referred to another doctor, preferably in a different hospital if that is a feasible option for you.

Once you get sorted out with better treatment - revision of stoma looks like it would be needed - then you need to go back and put in an official complaint about this terrible team.

OK, a complaint won't help you personally, but it means that this doctor and his team's practices will have to be looked into and changes made if necessary. If people don't complain about bad treatment then nothing will be done to improve things for others in the future.

Best wishes to you and your wife. I really hope you get better help soon.
 
Update: Apologies I have not updated sooner, but I have just been so hacked off by it all.

So we had a meeting with the Consultant on Wednesday and as predicted it was a waste of time. He has made his mind up that Sarah is doing all to herself and yet when I challenged him, he failed to provide any evidence to back it and said that he didn't need too, as he has discussed with 7 other Colorectal Consultants, including a professor (who is regarded as one of the country's leading bowel doctors) and they had all come to the same conclusion and they can't find a medical reason.

He also said he had spoken to the Consultant from St Marks and she had sent him pictures that backed up his theory, however he was a bit shocked when I told him they were in fact the pictures I had taken and sent to the consultant looking for help. He even tried to say they weren't my pictures (the ones posted here)...lol

The only person that can help Sarah is a psychiatrist.

We are a bit of a loss as what to do now, as Sarah just wants to get better. It's pointless asking for a 2nd opinion as he seems to have spoken to the Doctors that Sarah would get a 2nd opinion from. So we will wait and she has had her sessions with the shrink and go from there.

I 100% believe Sarah is not doing anything to herself, as I think over the last 8/9 years, I would have at least had a suspicion that all was not well. She has never acted strangely or tried to hide anything when I enter room. I have seen how upset this makes her, when there is no one else around and I have had to drag her to hospital, when she has been ill. If all this was some sort of self-harming issue to get attention, as this doctor thinks, I wouldn't have to drag her to hospital.
 
There's no way she could be doing this to herself. All they had to do was look at the photos. That stoma needs a revision very badly.

I am so SO sorry you two are dealing with this. What a crock of crap!! I'm so mad I could bite nails in two. I can't imagine how you two feel.
 
:voodoo::voodoo::voodoo::voodoo::voodoo:

:ymad::ymad::ymad::ymad::ymad::ymad:

:mad2::mad2::mad2::mad2::mad2::mad2::mad2::mad2:

And that's as nice as I can be about those *(&^%^**(&) doctors..
 
If I had this happen, that doctor would be needing the ER. Not sure what to think, perhaps go to another country to get treatment and then return and sue this doctor?
 
What a load of bullshit !, if he has consulted with 7 other consultants, they've come to that conclusion ( so he claims ) through his biased evidence !.
 
I agree with all of the above. Time to get to a hospital out of your area. Then report this doc to the general medical council.go to the PALS office in the hospital and get started on a complaint. I am ashamed that this is going on in this country its bloody barbaric ...😠😠
Much love n hugs to you and Sarah. We are all on your side here. As far as im concerned you can show any of my posts about this to anyone you need to if it may help. 💞💞💞💞
 
I will sue them no questions ask, im so sorry but im so angry!!! This cant go on. How can they leave it like this? That stoma are closing, what will happen then? There are are so many things that could go wrong , no way. Her health is very much important as the next one. Please let us know and im sending support for you and sarah
 
Yes i was just wondering the same thing Christi..
Hope you are getting somewhere with this p2baa. Love to you n Sarah xx
 
To Sarah and her husband:
No words will describe how horrible it is to look at those pictures. NO WAY would any physician in the US let that go. I cannot fathom why any physician that has "treated" you think that it was self-inflicted. They are total quacks, inhumane, and they should walk a mile in your shoes. It is a total disgrace. My heart goes out to you both, and I hope you are able to find at least one medical person that can help you. It makes me sick how evil the physicians are that you have come in contact with. Many prayers to both of you.
Love, Snap
 

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