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Post by wifeof03 on Oct 18, 2003 1:53:49 GMT -5
Hi, I am new here my name is Valerie and several weeks ago my husband had a colostomy. He has been in the hospital for 3 weeks and I noticed his stomach getting bigger, he was in the hospital cuz he had a infection in his lungs, he has COPD a surgeon was called in to look at him and they did some tests and said he had an obstruction in his bowels. Due to the fact his lungs were in such bad shape they opted for a colostomy. Needless to say my husband was not happy about this at all . He is still not. He has had so many problems with this he is currently in the hospital now because he was having severe pain and they started irrigating then parts of his stoma turned green. We live in a very small town with a cruddy hospital, so I am very concerned about his quality of care I was told that if I took him out of the hospital here that our ins. would refuse to pay. I do basically everything for him. We had a nurse who would come at first to change his barriers but everytime she would come and do that he would spring leaks all over, which really upset him. I am not a trained medical professional at all, but I learned very quickly how to do his barriers without them leaking. Now it's really like he doesn't want anyone else doing them but me. I would be lying if I said I am not offended by the smell...but I have been married for 10 years he is still the same man but he very much feels like his quality of life is over at the moment. The other night we had in him the ER before they admitted him and some of the nurses were really rude about the smell when I emptied his bag for him. Needless to say I let them know very quickly how unprofessional I felt that to be and I told them he didn't ask for this and they should show some compassion. It just makes me so sad that he is going through all this. today we were told that they were going to do his reversal monday then 5 hours later the surgeon changed his mind. He said he was going to wait until his lungs were stronger. They really don't get any stronger as I implied to him. Such a part of me that does not trust this dr. as when I asked him why his stoma was turning green in places, he said oh this happens. I am just not able to buy that. Thanks for allowing me the space to ramble on here I was glad to come across this place to have some sort of outlet.
Valerie
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Post by Jason_D on Oct 18, 2003 6:01:05 GMT -5
Hi there, Such a tricky, tricky situation. I did a reply to your other message on the board suggesting how you can get help and support n your area so have a peek at that and hopefully it will be of sum use to you both. What I wanted to bring up in this particular reply is the greenish colour stoma. It can happen. It happens to me. Most likely cause is mucous or summat, or maybe a piece of stool is putting pressure on the bowel wall n restricting blood flow a little bit, once it moves blood flows again and the colour returns. So at the moment I would try not to worry too much about the greenish stoma. So long as it comes n goes, its no real problem. As for the nurse saying what she said..... I only have one thing to say to that. "grrrrrrrrrrrrrrrrrrrrrrrrrrrrr". They make me sooo mad at times those nurses. Dont get me a wrong, a lot of them, in fact most are fantastic. But some nurses really can make your stay in hospital a living hell. Its good that you have learnt to change the bag and stuff. But one quick question - maybe youve already said somewhere and Ive missed it - but why isnt hubby changing his own bags? Cos he needs to know how to do it too, in case u left the house today and broke both arms or sumfin for example (heaven forbid of course). Take care, and hope things soon rapidly improve for him. The good news is that the ostomy can be physically reversed. Its just a matter of when is the best time and hopefully that will be sooner rather than later for him. Buh bye now, Jason D. (29, UK ostomist) webmaster and colostomist www.ostomy.fsnet.co.uk Edit: to correct major typo.
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Post by Kathy_from_England on Oct 18, 2003 6:08:58 GMT -5
Hi and welcome Valerie! You've certainly come to the right place as you're now a member of the on-line ostomy community...and we look after each other.
The advice you're getting does seem rather strange and I think you'll do well to check out the links Jason gave you.
My husband had an emergency ileostomy, totally unexpected, when he was extremely ill. Like you, I took care of him as he was unable to. I have come across nurses good and bad, caring and uncaring. I find that a good rant, directed at them, not pausing for breath, usually does the trick. Makes me feel better anyway!
My husband's ileostomy is permanent, and he has since had it revised so he is totally independent of me now.
Feel free to email me at kathy_from_england@yahoo.co.uk or LCM0L@aol.com (L-C-M- zero - L)
if you want to chat to me.
And of course, the chatroom here is open 24/7 with the main chat being at 8pm UK time today. You are very welcome to join us!
www.ostomy.fsnet.co.uk/chat.html - for the chat roomEdited by jason, to include the URL to chat room.
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Demmie
Posted a few msgs
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Post by Demmie on Oct 21, 2003 4:20:29 GMT -5
Hi Valerie I do hope things are improving for you both - it sounds an awful lot to deal with and take on board at one time. I had the same problems with the nurses changing my appliances after my operation - the only person who could get it right was me. I would try and encourage your partner to assist you and to work towards taking care of his stoma and change his appliances. This may seem a harsh thing to do - but when he does take care of that himself he is going to get a feeling of both satisfaction and independence - and would give you the same as well At the start my partner always used to come and sit with me, hold bits, pick up stuff I dropped and was just "There" for me - hospital was a nightmare, small loo cubicles, couldnt sit on loo and reach the sink - no shelves to rest appliances and bags and stuff - so I was very grateful for that. it did also give me confidence - the first time I did it all myself I was so proud . It had the effect of starting to control it - rather than be at its "mercy". I hope Jasons and Kathys experinces have reassured you about the green stoma , and that you manage to work through all these problems. Kind regards Demmie
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Post by wifeof03 on Oct 21, 2003 4:53:51 GMT -5
Thank you everyone for your words of encouragement...they mean alot. My husband got out of the hospital on Sunday. But not without some harsh happenings with the surgeon who operated on him. The Dr. was furious with us but I really don't care. It was like this.....first he was going to reverse it, then he says no, then he says ya then we say no we want to seek another opinion. We had a nurse tell us to get another opinion because she said she would want to make sure there is no infection in the stoma before they put it back in. So Thursday we see another surgeon many miles away in a much larger hospital. Since my husband has returned home I only change his barrier for him, although he is really pissed off at me about that at the moment and is not even speaking to me. I guess some of my frustration built up and I told him I couldn't always be here to do it all.
So he is pretty mad at the moment at me. It's been very hard for me as well cuz I have for the last several weeks had to go to work, do everything around the house, yardwork ect. He won't even drive now even though his primary dr told him he could. I just feel overwhelmed sometimes. I know this is very hard on him and he is the one this happened to. Then to top it off I have his mother breathing down my neck about taking care of him. It gets very frustrating at times. But I have taken the first step I think to try and get him to be more independent of me. Thank you all again for your advice and support.
Valerie
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Post by Kathy_from_England on Oct 21, 2003 14:21:31 GMT -5
Valerie, My heart goes out to you, it really does. It is very hard to be a relative in these situations. I understand your feelings - I have been there!!
You need a support system - friends, family, neighbours. People you can talk to, if only on the phone. Buy ready meals. Take short cuts with the housework. Rest as much as you can.
(((Hugs)))
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Demmie
Posted a few msgs
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Post by Demmie on Oct 21, 2003 15:02:44 GMT -5
Dear Valerie
I echo kathys sentiments - and wish you the best of luck on Thursday.
Can I suggest you make a list of things you want to ask - and you need answers to - along with you to refer to. Ask about your options and the consequences of them - ask the what if questions - ask for best and worst case scenarios. Try and get the information you need - nothing worse than a blustering consultant who puts you off your stroke and makes all the questions in your head fly out the window.
Feel free to email me if you want to vent/scream/shout demeter@dircon.co.uk
Kind regards Demmie
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Post by wifeof03 on Oct 21, 2003 15:56:48 GMT -5
I would like to thank you all for your support and kindness it is very much appreciated. Thank you all
Valerie
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Post by spiritman on Oct 25, 2003 11:44:13 GMT -5
Hi Valerie.. I have a stoma.. and a hernia as a result of the colostomy, I change my own pouch! and I also carry out most tasks, my stoma was born just a year ago! the surgeon cannot replace my stoma.. me and skippy are bonded for life now, I drive my car long distance because of my research work.. Your husband will in time be able to do most of the things he use to do after a while..Unless there were other complications relating to his medical problem??? I'm a newbie on here hope to here from you and other pouch wearers if any Regards to you and yours....Bernie. ( spiritman)
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aunt
Im new!
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Post by aunt on Oct 25, 2003 17:05:21 GMT -5
Valerie, you have a hard, hard job. I know my husband was at his "edge" many many times. He finally broke down and told me that he couldn't help me with my bags and wafers anymore. He was exhausted with meals and dishes and washing clothes and doing all his normal duties too. We had a home health nurse come in a couple of times a week until I was strong enough to do my own wafers--it was easier working it out with her than it was power struggling with him to get it anyway!! We were both pooped!! (that was an unintended pun!) Talk to your creepy doctor about home health care. Insurance usually pays for a reasonable length of care. As long as a year after my operation and recovery, my husband said, " I see you are feeling good and getting back to normal. When do I get to feel good again?!!" I felt really bad for him. I got all the attention and all the help and the whole situation was just work and stress for him. Since then, he has concentrated on being good to himself and taking it easier and is feeling better. I have been taking care of myself since about 3 months after my operation. Our life is normal again. Be kind to yourself and let the small stuff go. Your well being is so much more important that the dust bunnies accumulating in the corners. Do the minimum. Let it GO!! Keep us posted!!
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Post by wifeof03 on Oct 25, 2003 21:22:26 GMT -5
I have had a horrible 2 days . Yesterday I was at the hosptial with my husband over 14 hours. We went to the ER 50 miles from here and they paged our new surgeon, my husbands colon (stoma) was ganerous and he said it was dying. This dr. told me straight out that if he didn't operate my husband would die. He even told me it was his lack of care in the small hospital with an infection that resulted in this. He re-positioned his stoma and cut all the ganerous out and told me that my husbands colon on the insided looked to be healthy and they did a pathology report. He told me he didn't know why this other surgeon did what he did to my husband and he would do everything he could to find out why. He was in surgery for 4 hours yesterday and he is in ICU still, he is heavily medicated so I am unsure whether he knew I was there or not. I just wanted to let you all know what happened and thanks for having a place here where I can releive some stress. I hope none of you mind that I am from the US posting here...but I really like this board much better than the US support one Hope everyone takes care! Valerie
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Post by Kathy_from_England on Oct 26, 2003 3:21:05 GMT -5
Valerie, What an awful time you both are going through...although it does look as if this hospital has saved your husband's life.
However sedated he is in ICU, always assume he can hear and talk to him and reassure him.
Gary was kept heavily sedated at first, to allow his body to recover...then he came round but was very drugged. As they began to lower the dosage he appeared to be worsening...but he wasn't. It was simply because his body was taking over from the drugs and machines.
I know it is hard - but it is important to look after you too. When he comes round, if he sees you looking a total mess he'll start to worry. You need to look after you in order to look after him.
And it doesn't matter in the least where you live - everyone is welcome here. We have many nationalities in our Ostomy Community.
(((Hugs)))
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Demmie
Posted a few msgs
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Post by Demmie on Oct 27, 2003 9:18:52 GMT -5
Dear Valerie I do so hope that this is the start of a new beggining for you both , and now your husband has the medical care he needs. Please take time for yourself as well Wishing you both the best Kind regards Demmie
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Post by julima on Oct 30, 2003 4:12:27 GMT -5
Oh Valerie, I'm so sorry to hear of the awful time you've both been going through. As others have said, hopefully this will be the start of an upward turn for you and hubby. Sounds like he is in better, safer hands now. Be strong, and keep us informed ..... we're here for you, OK? (((HUGS))) Julie XXX
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Post by wifeof03 on Oct 30, 2003 10:39:01 GMT -5
My husband came home from the hospital yesterday. He seems to be feeling better. So far so good anyway. He is not allowed to do anything which I already assumed but it really frustrates him. He is not used to just not doing anything. HIs sick leave at work has been extended cuz his dr called and told them he could not come back to work yet. But they told us yesterday 3-6 months for his reversal. Our new dr. said that he can not understand why this other dr. did this colostomy to him in the first place, but he was going to find out why. He told us he could of went in and fixed the problem without giving him this colostomy. They did a pathology report on his colon and he has no cancer or no diseases. Which we were thankful of. So I hope we are in the right direction to a good recovery!
Valerie
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