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Anyone have experience of a stoma - please help!

(49 Posts)
Verybusymummyof2 Sat 27-Apr-13 02:09:29

DH had ilisotomy as a result of crohns about 12 weeks ago. Generally going okay, but as had a couple of episodes of stomach upset. During which time he gets severely dehydrated, VERY quickly, making him faint and feeing general crap. Currently having one of these episodes, projectile vomiting, and getting very dehydrated quickly. Anyone have experience of this during the early recovery stages and any tips would be MUCH appreciated !! Thanks...

Showtime Mon 03-Jun-13 21:38:04

Thanks for the tip about drinking flat coke to help with nausea/blockages. After increasing painkillers, been prescribed daily doses of Movicol, which does keep it moving, although have not noticed anyone on this thread has been prescribed same.

gingeroots Sun 02-Jun-13 13:38:44

Oh gosh ,what a b***er .

Why do things always go wrong at weekend and before holiday ?

I'm so sorry - sure not what you want to hear - but you know he needs to get looked at don't you ? Before you go away .

Let us know how it goes ...

Verybusymummyof2 Sun 02-Jun-13 10:13:54

Hi, I've not been on for a while. DH eventually made a good recovery eventually and we have had a good 2 or 3 weeks.
The jelly babies have worked a treat -we should buy shares in the company! We went out and about caught up with friends and things were good.
Then Friday, he called from work to say he was getting indigestion pains again and the sickness feeling he gets before these past episodes. He then couldn't keep anything down for a good 12 hours. Vomiting, no output. It stopped but is obviously wiped out and has since had very bad acid, and more worrying his eyes look yellow. Not massively but slightly tinged? God I am worried, I have googled and seen a condition called psc - to do with liver, which has a strong link to ibd.
I know this is not about me, my poor hubby, he is so down but I just feel so worried and its hard having 2 young children too. We are meant to be going on Holliday tomorrow.
Any one any experience of jaundice?? Can it follow bad vomiting and be nothing too serious????

ifyouletmefinish Wed 15-May-13 14:40:44

So glad to hear it was good news Pud. It sounds like your poor dad has been through so much.

verybusumum hope your husband is on the mend.

And Wannabe really hope the operation went smoothly. Gah, those first few days afterwards are really tough thinking back... A few weeks on and I feel so much better if that is any consolation, I would never have believed it at the time!

Morphandchas can I ask you, do you feel hungry very much? At the moment I am constantly hungry. I'm trying to drink a lot of water but still feel I could eat a horse. (should head down to tesco then ha ha).

Thumbwitch Wed 15-May-13 14:27:50

That is good news, pud1 - so pleased for your Dad. Good luck with feeding him up and getting him strong enough for the chemo. smile

pud1 Wed 15-May-13 13:22:35

I have had some great news. the scans have not showed up any more cancer. my dad is going to have chemo as a preventative measure to stop it coming back. he needs to have it with 3 months of his op so we have got 6 weeks to get him fit enough. i was so worried that the cancer had spread and that he was going through all his for nothing. it is such a releif

gingeroots Mon 13-May-13 11:37:25

Just keep going pud you sound like a good team .

I expect there will be wobbles along the way when neither of you feel like being strong but that can be got through .
I just mean don't feel that you both have to be strong all the time .

Make sure you know what help is around ,ask the nurses at the hospital .
Your dad should have a specialist nurse .
And never worry about asking people to go over things again ,it can be a lot to get your head round .

Keep posting .

pud1 Mon 13-May-13 09:43:06

thanks you all. i had not thought of getting him some cream.

he has called this morning to tell me that the blockage is starting again so i think they will be putting the tubes back in. i am so proud of him. he is being so strong.

gingeroots Mon 13-May-13 08:57:29

Pud so sorry for what you're going through .

Your dad must be proud to have you on his side .

Lots of cream for your dads poor bottom - zinc and castor oil cream ( buy anywhere ,saw in 99p shop ) very sticky . Maybe a layer of vaseline on top .
Or nappy rash creams like metanium /bepathen less sticky but again a topping of vaseline would help .

One step at a time .

Thumbwitch Mon 13-May-13 00:49:32

Pud, when my mum had her colostomy (emergency due to peritonitis from a burst, infected diverticulum), she "leaked" for some time afterwards from her bottom as well - it's normal, it should just be the mucous that the bowel produces to help ease the passage of stools - it will stop after a while.

Sorry to hear your Dad might need chemo as well, hope they can get his stoma under control before they start it, poor man.

triplets Sun 12-May-13 23:05:49

Hi everyone and so sorry a lot of you are having problems. My dh was diagnosed with bowel cancer (stage iv) five years ago. They removed the tumour and had an ileostomy bag, we called it Gladys!! It took months for him to settle down with it, all the problems you are all experiencing. Dehydration was a huge problem, at one point he passed out indoors and ended up in hospital for 10 days! Dioralyte really helped, food was little and often, mushrooms and anything with skin on was trouble. 2 years ago he had it reversed, his bowels have never gone back to "normal" its been a nightmare for him. We found the stoma nurses excellent, its a huge thing to deal with on top of the original illness. Good luck to you all. x

MorphandChas Sun 12-May-13 22:48:07

Message withdrawn at poster's request.

MorphandChas Sun 12-May-13 22:47:37

Message withdrawn at poster's request.

pud1 Sun 12-May-13 21:01:57

Hi all. I am so worried about my dad at the moment but reading this thread has really helped.
He had his opinion on the 9th of April and is managing brilliantly with the bags but has had so many other problems.
He had a reaction to the epidural that took a week to sort out. He them got a water infection. He has been suffering with blockages and horrendous pain. After about 3 weeks of going through the cycle of feeling great for a day, being in terrible pain fora a day then being violently sick which would make him better then the cycle starts again. He finally had a scan that showed up a collapse and he has had tubes inserted into his stoma to open up the collapse but they fell iout. They doctor is not putting them back in as they think they have done the trick. he is also leaking from his bum and they are going to drain fluid tomorrow
He has also been told that he will need chemo as they have found cAncer in one out of the twenty lymph nodes they checked. I am so worried that he is not going to get through this. He is absolutely knackered. I am hoping this is because his stoma is playing up and not the effect of the cancer. He is on tramadol and steroids.
I am going to the meeting about him chemo on Tuesday and I have such a dreaded feeling about it.

Thumbwitch Thu 09-May-13 23:05:28

The fluid is generally because your small intestine is irritated/inflamed and therefore not reabsorbing the water from your intake as it should.

"Windy" foods for my mum included peas, lettuce, cucumber, cabbage etc. (but not cauliflower), beans of course - so she avoided these. Apples may be another culprit but she rarely ate those anyway. Stewed apple, on the other hand, wasn't a problem.

Verybusy - glad your DH has seen the right people and hope that the infection sorts itself out, although I AM surprised they've dismissed it as viral, given that he has had a blockage and only recent surgery.

MorphandChas Thu 09-May-13 22:54:22

Message withdrawn at poster's request.

Lonecatwithkitten Thu 09-May-13 21:39:23

It is also worth talking to your stoma nurse about "dumping syndrome". A close friend has had a total bowel resection and had this doctors are terrible at dealing with it stoma nurses brilliant. She had a week where the doctors treatment just made her worse and worse, 48 hours doing what the stoma nurse said much, much better.

Verybusymummyof2 Thu 09-May-13 21:00:38

Morph - didn't realise thread went onto next page. Only just seen your post.
High output is about 12 times a aday and is very liquidy and sometimes green (sorry if tmi!)
may be wind could be a contributing factor to the pain, did you have any useful remedies or was it just a case of riding it out?

Will stock up on coke !

Verybusymummyof2 Thu 09-May-13 20:53:15

After virtually no sleep last night, constant pain for poor DH, we went to a&e this morning instead of the GP. Think GP would have just sent us up there anyway. They diagnosed a blockage, dehydration. Had X-rays, bloods revealed increase in white blood cells which would indicate some sort of infection, but they said its viral not bacterial so no antibiotics and liver is working overtime. Got outpatients appointment for next week.

Ginger - he does have omneprazole. Think he takes one before food??

Hope this is the end of the bad run and things pick up. Poor DH, he was told he would feel so much better after the op to be rid of his bowel - he is just fed up and disappointed that he still feels crap!

One more thing, have read that 6 small meals and grazing is better than 3 meals, so might adopt this strategy. Thanks for all your support everyone flowers

gingeroots Thu 09-May-13 10:40:01

Thanks Thumbwitch of course what you say makes sense ,or would have done if I'd thought more about it .
Think I was getting carried away a bit there .

Thumbwitch Thu 09-May-13 10:10:39

No I'm not a doctor, but I do know that coke has the power to dissolve things, usually in a few hours though so it's not going to stop you choking, sadly. It might help a little, especially with fatty foods.

MorphandChas Thu 09-May-13 10:06:44

Message withdrawn at poster's request.

MorphandChas Thu 09-May-13 09:45:31

Message withdrawn at poster's request.

gingeroots Thu 09-May-13 09:31:36

Thumbwitch good tip about making fizzy drinks flat ,I think a little added sugar ( to the shedload already in them ) does the same .

I'm very excited to think coke might actually digest/dissolve some of the food .
I get food stuck in my throat because of a blockage . Do you really think the coke might help ?

I wont hold you to it ,know you're not a doctor ( though I suppose you could be ) . And it's not as if it would be dangerous to give it a go .

gingeroots Thu 09-May-13 09:24:46

very no that doesn't sound right . Is he on anything for indigestion ,like omneprazole ( sp? )? sorry if you've already covered that .

Is there someone with specialist knowledge you could contact - have you got any numbers to ring about this type of thing ? Can you ring the ward he was treated on ?

I know it can be hard to get through sometimes - I phoned the Macmillan people at the hospital once and they contacted the specialist nurse for me and got her to ring me . The MacMillan person has an answer phone if they're not there but they're very good at phoning back .

It just seems so wrong that you're left struggling to cope with this on your own . And unless your GP is really good I worry that they won't know much and will just refer you back to hospital . Though maybe they could ring on your behalf .

Good luck ,let us know how it goes .

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