Anyone with two stomas

Hi Dean/Danni,

I'll just quickly relate my story.

I had the same op two years ago - I'm 53 BTW - now left with two stomas.

Had quite bad depression for 3 months post op but managed with out anti-depressants but went to counselling sessions. Had trouble sleeping so had sleeping pills which helped a little.

Started working part time after 3 months and was back full time after 6 - the depression, anxiety and sleeplessness left at this point.

I'm managing ok with the bags with a daily change that takes less than ten minutes.

I do everything I used to do (swim, cycle, football etc) but I feel I only have about 80% of the energy - I don't think this will improve now.

Hope this helps.

Cheers

Ian.

Hi Ian 

im sorry I don’t know if I have replied to this message as I’ve just seen it I don’t know why I’ve not seen it before? 

Thanks for your reply.. My Dad has some depression for a couple of months after the op which is only natural I think with everything you’ve been through. My Dad still struggles with sleep now and he had his op in September. He’s currently on mop up chemo and has just completed his 10th one? Did you have to have any mop up chemo after? 

My Dad is back to playing golf though and managing the bags well, there has been the odd leak which isn’t nice and one happened when he was out which obviously puts you off going out then as there’s not a lot you can do if your out and it happens. My Dad is suffering with constipation when on chemo and gets terrible pains and is being sick with pains I don’t know if you ever suffered with constipation.. 

thanks 

Danni 

Hi Danni

Good news that your dad is doing well and back playing golf although not so good he has experienced the dreaded leak but as you say these things happen when you least expect them. I've taken to stuffing a disposal bed pad down my underwear to catch any leaks and only today I was reading that the thing to use is puppy training pads which seem to do the trick and saves on any mess if one happens.

I didn't have any mop up treatment.

Your message arrived at the right time as I was speaking to a lady at the weekend whose mum was giving up because she was under the impression that quality of life stopped when she got a bag and here's you dad after all he's been through is out playing golf a true inspiration to us all current and future ostomates.

Having chemo can effect many things and constipation is only of them, has he spoken to his GP and asked what he can take for it but he has to be careful he doesn't go the other way, if anything I suffer from the opposite and have a very liquid output.

Wish you dad well from me.

Ian

Hi Ian 

Thanks for getting back, yes them Leaks can be worrying if your going out, before having this op my Mum&Dad were out every weekend they would meet friends Friday and Saturday night they had a really good social life but since this op they rarely go out now on a weekend night which is such a shame.  As the couple of times he’s been out he’s had leaks with his bags. Yes I suppose pads would work I could mention that..  my Dad is playing golf and is enjoying that which is great and goes out most days in the car to different places which is good. He’s not one for just sitting around you see. This op has stopped him doing things though which they don’t tell you when you go for it they say you can do everything you used to do but I don’t think you can when you have 2 bags it’s not the same but you got to try and not let it stop you. 

Arhh that’s lovely of you to say he’s an inspiration thank you and yes I think he is to as he’s coped so well with everything even through chemo aswell.. it is a life changing op and yes I think you can get down and depressed over it all..  My Dad used to always go watch my son play football but chemo has effected him as in he feels the cold in his face and hands so much now and is all tingly from it so now he still goes to watch but sits in car it’s just things like this.

Them pains my Dad has been getting and being sick we think it might be from eating apples as it’s happened when he has eaten them so it could be to do with that or may just be a coincidence. 

Thanks for all your advice though Ian it’s always appreciated  hope your doing well and everything is good with you. 

Danni 

talking about stoma nurses the other week my stoma bled not from the stoma but around I managed to stop I phoned the stoma nurse she if it happens again phone us they shouled han examined it

you are lucky to go on holidays I cant with so many leaks also I have hpn a nurse come every night and morning to put on and take off  I have it because of nutrients I loose constant diarhesea

grafiti

I am sorry to hear you're having so many problems, can I be of any help to you with discussing these problems.

When you say you had bleeding from around stoma do you mean

where the base of the stoma was stitched to your skin as this is to be expected and is nothing really to worry about

however if you are bleeding is coming from the actual stoma stoma (around the circumference) this could be the result of a tight fitting pouch, does your nurse check the size of your stoma before attaching a new pouch as it may be causing a trauma

but if the blood is coming from inside the stoma then you should immediately be contacting your stoma care nurse or GP for further investigation.

Have you in your change kit a good plastic template that you or your nurse can use to measure your stoma.

I am not sure of the implications of being HPN would have on your stoma management but I can understand what it is like have constant diarrhoea and would welcome the opportunity to be of help to you by discussing all the problems you are experiencing.

You should not be expected put up with constant leaks or diarrhoea.

Is the nurse you refer to a stoma care nurse or a district nurse.

Please keep speaking to me and let's see if we can improve your quality of life together.

Ian