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Original poster

Anybody know much about stoma care, after bowel surgery?

103 replies

triplets · 28/04/2008 09:17

Hi,
My Dh is coming home today after his big op, trying to trawl thru the net mainly looking for more info on diet for him, seems abit confusing, just wonder if anyone can help lease?

OP posts:
bellavita · 06/05/2008 18:41

There are two things you need to be aware of with regard to alcohol. Firstly it is likely to increase the output into his bag and necessitate more frequent emptying, this is often enough to stop people overdoing it. Things like red wine can make it look like blood too so you should be aware of that too. The other issue is alcohol is a diuretic and as ileostomists live on the edge of dehydration most of the time, too much booze can have a bad effect, this usually manifests itself as the hangover from hell (speaking from experience here ). Having a drink will probably help him feel normal, this is as important as any other concerns at the moment so don't worry too much about it. (Bellavita's other/better half)

Original poster
triplets · 06/05/2008 21:46

Thank you...............so should I just leave it and let him find out for himself? I just am so worried about what the consultant is going to say about the liver when we see him, esp after seeing it in surgery.

OP posts:
bellavita · 06/05/2008 22:17

I think you have to let him find his own way. Getting on and doing the things he used to before the surgery is all part of the journey back to normality and despite everybody's best efforts that is usually a journey we take alone. I sometimes think the recovery from this surgery is harder for the patient's loved ones than it is for the patient, all you can really do is be there when you're needed.
The fact he is enjoying a drink again is probably a good sign, I certainly didn't fancy one at the start. Try not to worry so much he sounds to be doing fine to me.

Original poster
triplets · 06/05/2008 22:24

Will take your very good advice, thank you. So not looking forward to this new journey we are on, we have just spent 14 years struggling to get where we are today, then bang......so unfair, but then life is, as we know already.

OP posts:
Original poster
triplets · 06/05/2008 22:28

Just peeped at your profile, we love Florida and that our goal for next year! We took our trio in 2005 and 2006, Disney and Anna Maria Island, it was heaven. Last Aug we did a road trip thru Cali/Arizona and Nevada for 4 weeks, it was fantastic!

OP posts:
bellavita · 07/05/2008 00:17

Just having a cup of tea before I go to bed - can not go to bed straight away after working.

Hope DH put your mind at rest earlier.

Many years ago, DH and I did California. Landed in San Fransisco spent a week there and then drove down to LA. We had a great time.

The boys want to do California next year, but I think it just maybe Europe. We had two nice holidays last year, a long weekend in London and a long weekend (DH & me) in Nice, so might have to cut back a little and then maybe do something big 2010.

We are back in Florida in late July.

Speak to you soon.

shouldbeworking · 07/05/2008 09:49

Bellavita .....sorry to kind of hijack this for a bit, just wondered if I could ask your Dh a question. Since my Dh has had his ileostomy reversed he seems to suffer from all the symptoms of IBS. I have a friend with IBS and her symptoms are very similar to those of my Dh. These were at their worst in the 6-9 months after his reversal and, although they have got better in recent months, they are still causing him problems. Is this common after bowel surgery?

Triplets...glad your Dh is a little better.

bellavita · 07/05/2008 10:05

Should be - cannot remember now - will copy and paste your question to him on msn.

shouldbeworking · 07/05/2008 10:08

Thank you very much

bellavita · 07/05/2008 10:15

This is DH's reply

IBS is one of those odd things, it is generally diagnosed when everything else has been ruled out, it is a functional disorder there is no inflammation or infection involved. It is no more common after ileostomy surgery than in the general population however a lot of things that happen in the recovery are typical IBS symptoms.

Hope it helps.

bellavita · 07/05/2008 10:17

Sorry, did not realise there was more - here it is -

Bloating and cramping are common, a bacterial imbalance in the bowel can easily cause bloating and adhesions which form after any abdominal surgery can cause caramping and pain. If this is an on-going problem you can speak to your Dr there are a number of things than be given to help these days.

shouldbeworking · 07/05/2008 11:49

Thanks very much. Please thank your Dh. I will make an appointment for gp, but as he has been better in last couple of months, I think your Dh may be right and it could be part of recovery process. Thanks once again.

bellavita · 07/05/2008 15:30

No problem

bellavita · 08/05/2008 09:03

How does H feel now he has had his clips out?

Original poster
triplets · 09/05/2008 08:39

Hi Bellavita,
In a rush, tried to send you a long message last night but something must have been wrong with MN it kept saying error. H very much improved, awake all day, eating very well, got an appt to see the consultant on the 19th, fingers x`d!

OP posts:
bellavita · 09/05/2008 08:45

Glad things are looking up.

Yes there was a problem with MN last night.

Got an extra shift today at work agreed to it before I knew it was going to be glorious weather - typical.

Keep in touch.

bellavita · 10/05/2008 19:19

How are things Triplets?

Original poster
triplets · 10/05/2008 22:24

Hi Bellavita,
Was going to go up early tonight as I am running out f time to finish my book club book, been waiting for Rebecca to come home from a party! Harry went up before me, so no loght, cant read, am hopeless at trying to read downstairs! Well H is looking very well, in fact I think though he is over doing it, he has been to his allotment tow days running, for 3-4 hours, tells me he is only doing some light weeding! Its only just over two weeks since surgery, but you cant tell him! He is eating much better now, three small meals a day, small snack in between, but not enough water, well.......thats what I say! He seems to be coping with the stoma ok, its me that has a problem with it, I have to be truthful here, I cant sleep as I feel I am going to touch it, it rustles in the night and makes odd noises, it isnt something you can just get used to is it? He had a letter yesterday to go back to see the consultant on the 19th to discuss where we go from here, I almost dread it. Now he is over the worst of the surgery, life is beginning to feel "normal" again, then I have to remind myself its cancer, its so odd, scary, yet still unreal, if that makes any sense? We`ll see. Better go to bed, needs must! Thank you for keeping in touch, such a comfort. xx

OP posts:
Original poster
triplets · 10/05/2008 22:25

Dreadful mistakes, not like me!

OP posts:
bellavita · 11/05/2008 11:20

this might just do the trick re rustling

The underwear has a pocket for holding the stoma bag in place.

Some of the underwear is available on prescription (up to 6 pairs a year)

bellavita · 11/05/2008 11:30

By the way - it is not more water to drink he needs (he will get enough through his food) it is the Lucozade Sports Energy Drinks or any other sports drinks if he is feeling dehydrated. The water will make him feel worse.

The rustling and noises never bothered me tbh, it is not something I was really aware of.

I will admit though that DH and I did not do cuddles, kisses or anything else in bed (or do anything anywhere for that matter) whilst he had his stoma only because I was afraid of hurting him or squashing it.

Obviously if this had been a permanent thing then we would have had to get over that hurdle.

Original poster
triplets · 11/05/2008 11:45

Thanks for the link, they would be good, will get him to follow that up , back later.

OP posts:
bellavita · 13/05/2008 14:05

Hello. How are things?

Original poster
triplets · 13/05/2008 21:54

Hi Bellavita,
It is good of you to keep in touch. Well, I came home today to find he has sawed the garden fence down by hand, and been to his allotment for 4 hours! Three weeks ago tonight he was just coming out of surgery!I t is impossible to stop him, he is not going to listen to me, he looks amazingly well, is now eating well, stoma seems ok, its hard yo imagine there is anything wrong with him!He had a call today from the oncology nurse to give him the result of the surgery and what the team have decided, despite the fact he has an appt to see the consultant on Mon! Apparently along with the tumour a large section of bowel was removed and some lymph nodes, 19 of them, 5 of which contained cancer cells, so that how it spread. The original treatment plan is to go ahead, which is encouraging, so we`ll see. At least he is not being told there is nothing they can do, so we just want to get on with stage 2, which is chemo. Thats the latest!

OP posts:
bellavita · 14/05/2008 07:18

That sounds positive triplets.

Getting on with it is obviously H's way of dealing with things. A man's gotta do what a man's gotta do .

Glad things are going well.