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Hi all,
My sister had an emergency CS on Wednesday during which she was delivered of a healthy baby. Unfortunately the possibility of a perforated ileum was not considered until Friday evening after a CT scan despite the fact that she had no urinary output in her catheter bag since the CS and the huge painful distended abdomen. A couple of hours after surgery they nurses hooked her up to a drip as they thought she was dehydrated- however despite pushing the liquids for 2 days there was still no output of any kind.
On Friday she was taken to in to theatre to have her CS stitches opened again, in order to investigate had happened. At this point it became clear that her ileum had been perforated leading toa collostumy being put in place.
Saturday she was unconcious, sunday she started coming round but very ill, filled with pain killers, every drowsy and still in pain.
The reason I am posting is to find out whether a collostomy is a permanent thing of can it eventually be removed. She is extremely tired, very much in pain, exhausted and trying to adjust mentally to her current situation. The Dr's are saying that it may be removed in the future should the ileum repair and regain peristalsis(SP), however they are not being clear if this could ever happen.
I would really appreciate if anyone could offer any advice.
At one point we all thought she would die, we are so glad that she is still with us.
BPG
Hi...what a horrendous situation! Weds-Fri is a long time to have an undetected ileum perforation...I assume there will be an investigation of some kind?
Anyway, I know that some colostomies are entirely reversible, but this varies from case to case.
Big hugs to everyone
Hi MEG
madenglishgirlWeds-Fri is a long time to have an undetected ileum perforation...I assume there will be an investigation of some kind?
The hospital is preparing to be sued... when I had my CS the catheter output and temperature were checked every half hour. As was heart rate and blood pressure as they are considered indicators of things going wrong no matter how much codeine was administered.
madenglishgirlAnyway, I know that some colostomies are entirely reversible
Thats a relief.
Thanks for the hugs- my neice has been sent home as the hospital says there is nothing wrong with her and they don't have the staff to take care of her (since her mum is in intensive care she can't). It's at times like these you need a supportive family living very close to you.
Wishing you and your sister and the baby well.
Hi. Hope things are improving,
In answer to your original question............. some colostomies are reversible, but quite often the docs will want everything to settle down before reversing it. So please don't worry if your sister gets home with the colostomy as it may be reversed when she is feeling stronger!
Sending hugs!
Oz
Some are reversible, some are not.
Peristalsis is the way the various parts of the digestive system move what is being digested along. So from what you have said, if the digestive system is functioning normally then it can be removed, if not then there are other options such as removing the damaged tissue and reconecting, but that is something to discuss with the doctors.
My daughter had an emergency ileostomy following an undetected colonic rupture (which became gangrenous as it was undetected for 4 days) for 7 months, the doctors would not discuss the chances of this being reversed until they operated again to see how well the remaining bowel had healed. It may be a good idea to get in touch with the colostomy association - they were very helpful in supporting us during and after, and are very used to unprepared relatives!
http://www.colostomyassociation.org.uk/index.php?p=204&pp=3&i=
If you are considering action, please contact the AVMA - we were not going to sue until we were advised to by a very concerned consultant - the surgeon responsible was struck off - it turned out we were only one of a number of cases he had shown negligence in (another botched caesarean - I was very ill too - daughter was airlifted to another hospital)
http://www.avma.org.uk/
If you want to talk, contact me on PM.
K
Thanks for all your replies..
My sister is still in hospital. The ileostomy bag is leaking, she is vomitting frequently and is in an extremely poor way. She was just under 9 stones whilst full term (pregnant), her normal weight is 8 stones but her current weight is 7 stones and dropping. She also started a chest infection after her bowel surgery and now has pnuemonia.
We have been asked not to go to visit her if we have been in contact or near anyone with a cold or flue. She has often been too exhausted to sit up, as yet she has not spent a single night with her daughter or fed her at all.
As yet her husband has not formally contacted the AVMA although I have passed on details I was given by Kiera (many thanks). He is too busy trying to keep his job, taking his son to nursery and visiting her. The baby daughter still has not yet been named, she is being taken care of by my other sister as since her children are over 4.
I just wanted to update those who replied.
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What a dreadful state your sister's in, I really do hope that things improve soon. It was difficult to stop my daughter's weight from dropping whilst she had the ileostomy bag, at her first birthday we managed to get her into a 0-3 month dress we had bought just before she was born; it was still a bit big on her. She went from 6 1/2lb at birth to just over 4lb at 6 months...The problem with vomiting and weight loss is normally due to the sodium levels dropping, once these are stable weight can be maintained. I had to force feed my daughter with a very strong sodium solution 4 times a day. Really sorry to say this, but I'm not sure we ever had a day without the ilesotomy bag leaking or falling off, but saying that as it heals it should be easier to stop this happening (and the fact it's not on a wriggly baby too tiny for any manufactured bag!) I would contact the AVMA asap, you can do this on behalf of your sister, they can offer very practical help over work/ childcare etc. Best Wishes. Keira
BPG I am so sorry to hear that you are going through this. Please get your BIL to check their insurance, it might contain illness cover or cover for disability - sorry obviously I hope that she will improve and get sorted and this won't be needed. DO get him to contact AVMA, even if only to put a marker down. Can you open up a file on the computer (or just hand write) and keep a log of everything you are told and everything that happens? if things get as far as a court case this will be crucial and you need to record everything if you can, accurately. I know it is the last thing anyone wants to do...
So sorry I hope things will improve soon. Can your BIL get some compassionate leave? can you? You do need to take some time to get this sorted. I did find CAB helpful too when my family was in a similar position.
I am just updating those who were kind enough to reply.
My sister is now at home and is getting the support of a Stoma nurse who visits once a week. Her stoma as prolapsed and she now needs a stoma support belt.
Her son has found this very difficult to cope with (3.5 yrs old), his behaviour has been incredibly distruptive due to the feelings of confusion and abandonment he has been feeling. Both she and he are getting counselling.
The vomiting was due to low sodium levels- she has to take a lot of salt in her diet now.
Physically she has changed in many other respects- she had lost weight, and has not regained it as yet. Her hair is also falling out since her intestines are not absorbing the protein from her diet.
Unfortunately the relationship with her husband has also hit the rocks- he has threatened to divorce on 2 occassions so far. This is because she has not been able to do as much house work as she used to do and the house is getting a mess. I suspect that he doesn't find her attractive anymore either and is using this as an excuse to reject her because even after she called a cleaning company in he was not happy. He banned her from using a cleaning company again. (As God is my witness- this is what he said).
Her husband is isolating her- he has had furious rows with my mum and my brother over my sister's need for external supports (eg cleaner and childminder for the baby) as he thinks she should do it. We have even offered to pay for these but he has refused. A complete A$$hole.
Anyway... Sorry for the rambling post but I thought I should update this thread.
Glad your sister is getting the right medical support at home - her husband sounds like a complete dick. I could write more on what I think of him but I think I'll just leave it there. Thanks for letting us know how she is.
Take Care
I can't believe the situation. All the pain your sister is going through and that's how her husband treats her. There is so much I could say but I hope your sister starts to get on the mend and gets the support she needs. Being a new mum is hard enough without all this stuff.
Robyn
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