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07-25-2012, 06:21 AM   #1
Hayleymariex
 
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Stoma advice?

Hello everyone! Posted a question on a thread in the stoma sub before, but i thought I'd better make my own in order to get all my questions answered.
My boyfriend has had a colostomy, and an ileostomy so now he has 2 stomas. He's still in an induced coma right now, and so I haven't been to see him as I'm waiting to be there when he wakes up. I've been using this spare time to research everything that's been going on with him.
We're both 17, and neither of us know anyone who is going through the same thing as us. Do any of you have any advice for me on helping him cope with his stoma, and what to expect from it? It's reversible, so he's likely to only have it for a few months at least.
Thanks guys!
07-25-2012, 09:18 AM   #2
Terriernut
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HayleyMarie, I'm confused. He has two stomas? Do you know exactly what proceedure he had done? And have they induced a coma?

I think we'll need to know what is what to help further. An ileo and a colostomy perform similarly, however an ileo will always have a more liquid output.

Recovery from surgery can be quite slow, so patience is required. On the part of the person recovering usually! We usually want everything to get better faster! I'll wait to hear from you about what all proceedures they did on your boyfriend. And Hayley stay strong!
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07-25-2012, 10:41 AM   #3
Hayleymariex
 
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Yeah he has 2, I've not seen them yet because I haven't been, but his mum told me that he has one nearer to the top of his belly, and one nearer to the bottom. I'm not 100% sure on the procedures, because I'm just going by what I've been told. But apparently the stomas are just standard reversible stomas. They induced the coma on sunday morning, to give his body a break and also because they couldn't sew up his wound because of swelling, but this morning they managed to sew him back up, and they're considering waking him up soon. Once I've been to see him I'll be able to provide a little more specific info.
07-25-2012, 10:56 AM   #4
Terriernut
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I think this is what he has had:
Double barrelled stoma:

Double barrelled stomas, like loop stomas, involve two stomas beside each other. However, unlike the loop stoma, the two stomas are seperate from each other. One stoma acts as an end ileostomy and so uses the small bowel, whereas the other stoma is made by the remaining colon. This secretes mucus and is also known as a mucous fistula. Only the end ileostomy requires a drainage bag. It is often a temporary stoma and has largely been superseeded by the loop stoma.

If that is the case, he will mainly be required to care for the ileostomy.

My thoughts are with ya'll while he goes thru this.
07-25-2012, 11:21 AM   #5
Tenacity
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HayleyMarie,

It is very nice of you to be so concerned and wanting to help your boyfriend. The only advice I can give you is to be strong for him. Try not to let him see you feeling sad or worried - try to lift his spirits instead. He is going to need you for support and understanding. If you find him to be angry or frustrated at times, try to see him through that without taking it personally, and realize that it is totally understandable for him to feel that way. Let us know if you have any other questions.
07-25-2012, 11:51 AM   #6
Snoflayk505
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It is so sweet of you to try and educate yourself and help him through this. I agree with Tenacity, be strong and try and lift his spirits and don't be afraid or shy about his situation. Help him get through it. Just do everything you would want someone to do for you if you were in his shoes. It's hard going through these things especially so young. Just remember, he is still the same person. Does he have Crohn's? How long has he had it for? Is he new to the diagnosis that caused him the Ostomies?
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07-26-2012, 09:02 AM   #7
Hayleymariex
 
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He was diagnosed with crohns when he was 12/13, so 5 years.
Thank you all for the encouragement, I'm sorry I couldn't provide much info, that'll be redeemed soon enough. They took him off the ventilator this morning, so he should be woken up from the coma soon and I'll be able to find out exactly whats gone on.
07-26-2012, 09:28 AM   #8
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i don't know much about stomas, but i hope he gets better soon
07-26-2012, 09:40 AM   #9
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Hi all,

I had two stomas, an ileostomy and a mucous fistula, which is a sort of diconnected colostomy. The mf needed a stoma bag to begin with. After a time I just used a dressing for the mucous. ( horrible thing )

The mf was removed when I had my proctectomy earlier this year.

I hope your boyfriend recovers well. He is so lucky to have you xxx
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07-29-2012, 04:41 PM   #10
Hayleymariex
 
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Got the situation explained to me properly now guys! It turns out he has one stoma, and one other bag. I'm still a bit confused cause I'm unsure of the difference, so if someone could explain the difference to me I'd be so grateful. Thanks for the support everyone it means a lot! xx
07-29-2012, 04:52 PM   #11
KazT17
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Hi Hayley,

I will try to explain. It sounds like the small intestine has been disconnected from the colon (large intestine). The end of the small intestine has been formed into the stoma. I am not sure, but I presume your boyfriend has had part of his colon removed. The part of the colon remaining has been brought out on to the stomach also, making a mucous fistula. So the stoma will be on the right and the fistula on the left. Any waste products will pass out of the stoma now and be collected in the stoma bag. Any mucous produced by the remaining colon will pass up through the fistula or down out of the back passage. This will be a lot at first but should reduce as time passes. Maybe the surgeon can form a j-pouch for your boyfriend in the future, and remove the stoma. Either that or remove the remaining colon etc.

Hope that makes sense and that he is recovering well.

Love Kaz xxx
07-31-2012, 01:43 PM   #12
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I've got all the right info now! He has a stoma, and a mucous fistula. In a year he gets the choice of having the stoma reversed, and being put back together, or living with it. Now that there's definitive information, how can I be more helpful to him? Is there any do's and don'ts? Thank you!
07-31-2012, 01:53 PM   #13
Terriernut
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It will be extremely beneficial to him to have a stoma nurse for the first month or so to help him. Has he been assigned one?

With an Ileo, he really needs to watch that he doesnt get dehydrated, that is my first and best bit of advice. Remember, he is not using his colon to absorb fluids now, they will come right out his stoma. So...he needs to really watch that he doesnt dehydrate.

The first 6 weeks, his stoma will have alot more output. It will calm down I promise! He will need to have a low residue diet for a few weeks. Then he should be able to introduce normal foods gradually. Sounds like he was terribly ill, so another piece of advice would tell him to be patient while his body recovers.

I'm glad he has you around to help!! Keep nosing around all the threads in the stoma subforum, there is advice about all sorts in here!
07-31-2012, 02:51 PM   #14
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Hi, I hope your boyfriend gets well soon and takes it easy. Your both in my thoughts big hugs. He's lucky to have you:-) keep us posted on his progress. xx
07-31-2012, 03:48 PM   #15
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Thanks, Terriernut! He will have 2 stoma nurses visit him at home every so often to see how he's getting on, and meets one of them tomorrow when they move him from high dependency onto a regular ward (woo!) He did ask me to ask a specific question. Today his bag made a sort of gurgling noise when he was passing wind, and a similar noise when he was passing stool into it. Will this stop over time, and if not is there any ways to prevent it? He's worried because he doesn't want everyone to know he has a stoma when we go back to college, and obviously those sounds will be noticeable when he's in a class or an exam.
07-31-2012, 04:05 PM   #16
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No I'm sorry to say the noises don't stop I just put my hand over Barbara to make it less noticeable. I'm glad he's making progress. Keep us posted. Hope gets well soon xx
07-31-2012, 04:07 PM   #17
Snoflayk505
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lol I was in the bank doing some business and my stoma made a nice loooong fart noise. I was so embarrassed but I quickly said sorry im hungry haha. This doesn't happen often but it does sometimes. it all depends on what you eat I think or how active the disease. He will learn as he goes on what foods react and cause gas. Crohn's disease is a very individual disease, it really is a lot of trial and error. I do know in my case eggs and applejuice make me gassy. Remember he also just had surgery, his body is probably still adjusting to his new plumbing Just help him laugh about it. My husband and I make fun of mine all the time.
07-31-2012, 04:10 PM   #18
KazT17
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It happens a lot to start with but gets less and less. And yes a hand over it stops the noise. Tell him not to worry he will be fine xxx
07-31-2012, 04:26 PM   #19
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Thank you everyone! I'll not lie, me and his mum did make him laugh with our awkward reactions to his gurgle. Simply staring at it in silence until it stopped, followed by a small "oh" from me. Cheerbear, I love that you've named yours! We felt so weird for thinking of a name for it (Mona!) as though we were naming a baby.
07-31-2012, 04:32 PM   #20
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Lol I thought it was better to name it if we are in public. My stoma nurse said to me have you called it a name! So we are not the only ones xx
08-01-2012, 07:40 AM   #21
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Brilliant stoma name!
Mine makes squeaky noises that perplex my cats.
In class or in meetings - people assume it is my tummy gurgling.
And wait til your bf learns to burp his bag!
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08-01-2012, 05:11 PM   #22
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Hi Samboi! The only problem he's having now, is that he won't be able to pass it off as his tummy gurgling because the sound it makes is clearly quite flatulent. He's a bit scared right now too, because he's worried about emptying his bag for himself. Any tips you can give me to pass on to him? Thank you!
08-01-2012, 05:30 PM   #23
KazT17
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Hi Hayley, honestly it will stop doing that soon. Mine only makes noises very infrequently now. He will have help with the bag at first, but he will learn to cope with emptying and changing it himself. Especially when he starts to feel well. After a few weeks it becomes 'normal'. Sounds like he is doing well now. Keep reassuring him that he will be fine xxx
08-01-2012, 05:58 PM   #24
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Hi Samboi! The only problem he's having now, is that he won't be able to pass it off as his tummy gurgling because the sound it makes is clearly quite flatulent. He's a bit scared right now too, because he's worried about emptying his bag for himself. Any tips you can give me to pass on to him? Thank you!
It will be very active for the time being, but after a while it definitely calms down a lot. My stoma was very noisy when I first got it but from about 6 weeks onwards there was still a bit of noise but now it's barely noticeable.

As for emptying, i'd recommend not letting the bag get too full before emptying as this reduces the chance of getting a leak. I like to kneel at the side of the toilet, lift my top and let the bag hang into the bowl. Then once it's empty I usually give the inside a quick wash at the sink and then roll it back up. I would also recommend getting some kind of waistband to hold the bag in place - I have ones from comfizz (you can get them free through your stoma supplier in the UK) I wear mine at all times apart from the shower and to be honest I don't know how I managed without it, they make the bag feel very secure, aid with adhesion and also hold the bag close to the body so that it is not visible under clothes.

Hope this helps
08-02-2012, 05:08 PM   #25
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[AlexJ;480730]It will be very active for the time being, but after a while it definitely calms down a lot. My stoma was very noisy when I first got it but from about 6 weeks onwards there was still a bit of noise but now it's barely noticeable.

As for emptying, i'd recommend not letting the bag get too full before emptying as this reduces the chance of getting a leak. I like to kneel at the side of the toilet, lift my top and let the bag hang into the bowl. Then once it's empty I usually give the inside a quick wash at the sink and then roll it back up. I would also recommend getting some kind of waistband to hold the bag in place - I have ones from comfizz (you can get them free through your stoma supplier in the UK) I wear mine at all times apart from the shower and to be honest I don't know how I managed without it, they make the bag feel very secure, aid with adhesion and also hold the bag close to the body so that it is not visible under clothes.

Hope this helps
Good advice
08-04-2012, 01:42 AM   #26
kiwij64
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Hi Samboi! The only problem he's having now, is that he won't be able to pass it off as his tummy gurgling because the sound it makes is clearly quite flatulent. He's a bit scared right now too, because he's worried about emptying his bag for himself. Any tips you can give me to pass on to him? Thank you!
,

Hi, firstly he is lucky to have you, seriously, I have an 18 year old daughter and a lot of her friends wouldn't be able to handle what you are handling. Secondly, love to your boyfriend. I had to have an ileostomy in April, all very sudden and like your boyfriend, I didn't even know what the hell was happening to me. What I've learnt and it might help your boyfriend some, is that you have to get control of your mind and control of the situation, however small. For me, emptying and changing my bag was my 'control'. I couldn't control what had happened to me but I could learn to empty and change my bag in record fast time and have control over it. So that it didn't control me. If that makes any sense at all? Anyway, it has helped me and I hope this helps him. Love to you both.
J x
08-04-2012, 06:35 AM   #27
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,

Hi, firstly he is lucky to have you, seriously, I have an 18 year old daughter and a lot of her friends wouldn't be able to handle what you are handling. Secondly, love to your boyfriend. I had to have an ileostomy in April, all very sudden and like your boyfriend, I didn't even know what the hell was happening to me. What I've learnt and it might help your boyfriend some, is that you have to get control of your mind and control of the situation, however small. For me, emptying and changing my bag was my 'control'. I couldn't control what had happened to me but I could learn to empty and change my bag in record fast time and have control over it. So that it didn't control me. If that makes any sense at all? Anyway, it has helped me and I hope this helps him. Love to you both.
J x
Thank you! The hospital are making sure that he gets to grips with his bag before letting him come home which will help him feel more in control. He's coming home tomorrow but only for a few hours so he learns to empty it in his own home and to get back into his routine with the new addition. Then next week if he's still nervous he can sleep at home for a night, then go back to hospital. We're taking baby steps to build his confidence which right now is the best thing the hospitals done for him. Ever. He's in complete control of what's happening to him, which has helped him quite a bit as far as I can tell. x
08-04-2012, 07:56 PM   #28
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That's a brilliant idea, easing him back into normal life slowly. And as you say, confidence really is key for anyone with a bag and for anyone who has been through what he has gone through. It's not that your life is over, it's just different and it's learning acceptance and being allowed to grieve for who you were and then moving on with your new life. I really applaud the two of you and I know he's going to be fine, and you will too. You have a depth of maturity that is pretty rare and like I said he's so lucky to have you by his side as he gets through to the other side. Take care of you too though, I hope you have supportive people that you can talk to too. Even though it's not happening to you, you're still affected by it and grieving to some exent too, so don't forget to take the best care of you too so that you can be the best for him xxxxx
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