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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...

Ouchmyhead Sat 27-Apr-13 02:18:36

I had a temporary ileostomy due to Crohns, and I'm actually having surgery at 7am to have a permanent one! I came on err to distract myself and find your post ... Crazy how things work!

Anyway, when I went through this with my temporary one I was told full fat coke and ready salted crisps, the sugar will help with the faint feeling, the salt helps with the absorption of fluids. If it lasts for more than 2 days I'd ring his stoma nurse or go to your GP as he may need fluids, if it gets too bad just go to a&e. I have Crohns though and I understand that sometimes all you need is to sleep, drink and eat what you can and rest without going to every medical professional! Definitely do the coke and crisps thing, and keep an eye on it! Especially the output, if it's significantly reduced just go to a&e as there may be a blockage caused by scar tissue and that needs sorting. Hope he feels better soon!

wannabestressfree Sat 27-Apr-13 02:20:51

I just wanted to say hello and that I had a colostomy fitted two weeks ago due to Crohn's disease as well. Hence me being awake at two in the morning. I find I get very thirsty very quickly and have been advised to be constantly drinking. Sometimes I feel miserable although I am aware it's early days. How long have they anticipated recovery to be? I will have to go back to work next month and still feel like I have been hit by a bus (I also had my fifth and ''final' bowel resection sad
Sorry I haven't been much use. If I have any problems we locally have stoma nurses (linked to hospital) have you got similar? They have been fantastic (have wound infection and stoma problems).

ifyouletmefinish Sat 27-Apr-13 02:43:49

Oh wow snap!! I had a permanent stoma 5 weeks ago and am up late because I'm thirsty and sore as well. It is so reassuring to see other people who have one as sometime you feel so alone. Another chrons person here as well smile I've been getting very thirsty - I find water with Gatorade in it really helps. Wannabe, I know what you mean about getting back to work. I have to get back soon but just have no clue how I will manage a commute and a 8 hour day as I get tired. Best wishes to you all and as I say, nice to be in contact with others going through this.

Verybusymummyof2 Sat 27-Apr-13 02:44:28

Thanks ouch and wannabe for such quick replies!

Output is actually really high, watery, yellow (sorry for details). Has taken some loparomide and we have the full fat coke on the go! He is complaining of stomach pains. And is being sick which is obviously not helping with the dehydration.
Really hope it's just teething problems as we really thought the operation would be the end of the misery this bloody illness brings!!!

Wannabe - his recovery has been pretty good, still very very tired (again is this normal), he was back to work after 6weeks, but out of hospital after one week....
Consultant said recovery could be anything from 6-12 weeks.
Are these episodes are teething problems, a bug picked up, or just life with a stoma? Poor DH, he never moans but I can see he is just fed up with it all.

Ouch - wishing you all the best for your op tomorrow!!

Verybusymummyof2 Sat 27-Apr-13 02:46:36

And hello ifyouletme! Thanks for post also! Good luck with the recovery x

ifyouletmefinish Sat 27-Apr-13 02:49:56

Verybusymum I had the same thing recently. Huge amounts of watery output, stomach cramps and really thirsty, extreme nausea. It lasted 24 hours and then I felt much better. How long has your poor dh had it? Any longer than that and i would go to a&e as could be a blockage. Poor thing i feel for him (and for you), its so tough when you just want to be better and feel crap. Has he had any output in his bag or just water?? Could he force down a banana as that helps with potassium and thickening output.

Ouchmyhead Sat 27-Apr-13 03:03:23

Does he have any anti-sickness medication? I have ondanestron and cyclzine which help! Definitely try eat some solids, just watery is an indication of a blockage too, but as you said there is a lot id be prepared to bet it's just teething problems - but it's always best to be safe!

Thanks for the luck, ill need it, I'm very nervous!

ifyouletmefinish Sat 27-Apr-13 03:07:50

Will be thinking of you Ouch, hope the op today goes smoothly. Have you had to fast and take horrible prep stuff??

Ouchmyhead Sat 27-Apr-13 03:40:06

No, they do an 'enhanced recovery' thing at my hospital and my surgeon says that prep cause more stress on the patient and bowel before hand - so pleased I got away with it! I've had some carbohydrate drinks which aren't that bad, just a bit sweet, they're meant to help my body recover when I don't eat after the op, so I don't get super skinny!

Verybusymummyof2 Sat 27-Apr-13 07:20:52

Well he finally got to sleep. Every time he drank anything it came straight up. So hoping the sleep will do him the world of good and although maybe worn out when he wakes hoping, the pain and watery over frequent output would have settled. He is under such pressure as its our babies 1st bday party on Sunday. I told him it doesn't matter, we can rearrange but he doesn't want to. Typically bad timing!!

He had a blockage before with no output and terrible pain, the culprit a pea! Which he now avoids. I never realised a blockage could result in watery output

Will get him to speak to GP about anti sickness pills, thanks for that idea!!

[Thanks] to you all for advice.

Wishing you luck again with your operation OUCH, you will be in good hand.
And wishing each one of you a very speedy recovery!

wannabestressfree Sat 27-Apr-13 08:05:57

We had enhanced recovery at the hospital I was in. I was amazed how quickly they try and turf you after major surgery. I have found it so hard since I have been home. Everything exhausts me and I have been returning to the hospital daily as have an infection in my wound (am on augmentin 675mg four times a day) and the stoma was pulling away from the stomach wall. They are keeping an eye on it. I have no appetite so am losing weight.
I was told to avoid coke due to gas. Does it help then?

ifyouletmefinish Sat 27-Apr-13 15:53:59

Wannabe that sounds so painful you poor thing. I haven't actually tried the coke thing myself but my stoma nurse said if I ever thought I had a blockage to drink a bit as it may help. I sympathise with the no appetite - mine is only coming back now.

Verybusymummy I hope your dh is feeling ok. And that the birthday tomorrow is a happy one. You sound so supportive and amazing, bless your heart.

Take care everyone! Sometimes it feels like two steps forward, one step backwards. But sounds like we are all really early days with our stomas and getting to know what works/doesn't.

gingeroots Sat 27-Apr-13 17:17:10

Think you can put a bit of sugar in the coke and that makes it flat .

Maybe try rehydration powders like dioralyte ?

Cant believe they sent him home with no antisickness tablets ,well really you need those sublingual ones that just dissolve next to gum as if being sick ,tablets are no good ! .
Buccastem is one I think .

Would it be worth trying to get over the counter ,otherwise A&E or OH GP ?

Sounds awful for all of you .

Showtime Sun 28-Apr-13 00:30:39

My colostomy was years ago, and nurse retired soon after, no arrangements made for successor. Colostomy Association's free magazine was a real help, and their system of having trained volunteers available for a chat also very useful, particularly on a bad day.
Best wishes to Ouch for the op, you'll soon get used to changed life with (hopefully) no poo problems.

wannabestressfree Tue 30-Apr-13 05:58:30

Just checking in to see how things are. I am seeing the surgeon today in clinic. Am 2 weeks 4 days post op and see feeling rough! I am finding it frustrating. Am so tired but struggle to get comfortable in bed. Eating is still difficult and I just feel fed up generally.
Anyway verybusy wondered how your husband was getting on?

fish54 Fri 03-May-13 22:19:46

Hi I hope it is OK to join in here, my DP had an ileostomy just over 2 weeks ago for bowel cancer, happily we had the news this week that there is no spread. He has been very unwell and is only now getting his appetite back. We are a bit unsure about his medication, he has run out of Naproxen the anti inflammatory he was prescribed in hospital and we wondered if he still needs to take that? I think it was for the internal bruising after his operation. Also if he is not taking those is it still best to take his antacid (Omeprazole) to avoid getting indigestion/reflux whilst things settle down. Thanks in advance for any replies.

gingeroots Sat 04-May-13 09:57:27

fish have PM'd you .
G x

Verybusymummyof2 Sun 05-May-13 20:41:51

Hi everyone,

How are you all doing??

fish, I am please you had the news that it has not spread. Hope is continuing to recover well.

Wannabe - sorry to hear you are still feeling unwell and low. How did it go with the surgeon?
DH unfortunately missed our baby's party. He was so ill,he couldn't even manage to get out of bed. And once the vommiting stopped, he was wiped out for another 3-4 days.
In fact, he too is so so so tired all of the time, It's funny because both consultant and GP said once the bowel is removed he would feel a million times better to be rid of it, It seems to not be the case at the moment.

DH is also very fed up at the moment. He is tired, he gets stomach pains and indigestiony pains and the output is quite high. Not really sure how to make him feel better, other than let him rest and take it easy. Is this pain normal and

Can I ask about output?? Since he was unwell, his output is quite high and he is having to empty lots during a 24hr period, particularly at night. Is this normal? And is pain normal too? He drives me mad slightly because he refuses to call up the stoma nurses to get these questions answered!

gingeroots Sun 05-May-13 21:48:54

Oh very that sounds hard .

Could you ring the stoma nurse and have a chat with her ? Or would that upset your DH ?

pud1 Sun 05-May-13 22:04:44

Hi all. I can't believe the timing of this thread. My df had his bowel removed 3 weeks ago due to bowel cancer and has an ileostomy. He has had some complications with blockages due to scar tissue. He is back in hospital at the moment as he is quite weak. Unfortunately they have found what he calls a trace of cancer in his lymph nodes and is going to start chemo in a few weeks.

He gets a lot of pain when the blockages starts and very little output. He is then very sick and feels better for a day or two then it all starts again.

dreamingofthefuture Tue 07-May-13 12:17:12

When I had my illeostomy I always suffered very high, watery output. I found one of the best things was marshmallows and jelly babies, silly as it sounds they really helped to thicken the output up. Also a spoonful of applesauce per day.

I was always told to avoid fizzy drinks but to drink squash / juice (not plain water though as that can dehydrate you).

I was also told to avoid fruit with pips, nuts, peas, sweetcorn as they can cause blockages.

Good luck everyone and hope those of you struggling are feeling a bit better now x x

Verybusymummyof2 Thu 09-May-13 03:56:51

Do you mean apple sauce from the jar that you have with a roast?

Well we are up again tonight, he has indigestion type pains all over. In his back, chest, stomach cramps which come and go - is this Normal??
It's not is it? sad
I am making an appointment with GP tomorrow for him, no arguments

Thumbwitch Thu 09-May-13 04:05:08

My mum had a colostomy and had to avoid peas like the plague, they were terrible. When she started bringing food up again, it usually meant a blockage, so if he's still having problems, definitely get him to the doctor or hospital.

As an aside, if you add water to any fizzy drink, it usually knocks the fizz out of it - the more water you add, the less fizzy it becomes. I (and Mum) used to drink flat ginger ale for nausea, but coke would work too (we just didn't like coke) and coke would help to digest/dissolve whatever is causing the problem, if it's food.

Good luck - hope it's easily fixed.

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 .

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 .

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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.

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 .

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

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 !

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.

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

Message withdrawn at poster's request.

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.

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.

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

Message withdrawn at poster's request.

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

Message withdrawn at poster's request.

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

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.

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 .

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 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 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

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

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).

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????

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 ...

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.

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