newbie

Hello nan-nan, a lovely name. Welcome to the forum. One of the regular contributors will pick up on your note and will either offer advice or tell you where to look on this forum.

Dont worry about your man seeing you, all the men I know would be very grateful to get the opportunity to cuddle you! Best wishes.

Thank-you Norberry, its a lot to take in at the mo, i will keep a look out here for any more help n tips, hope you are doing ok too.

Hi nan nan, I am 56 and had a tumour removed from my bowel back in october. I have a temporary iliostomy.  I do now often forget it is there! I have had no problems with it, I know some people struggle but I'm sure you will manage. The stoma nurses are brilliant and won't let you home until they are sure you can manage. 

I was a bit nervous going out at first but now I am quite happy to. I have an old makeup bag which I have put an emergency stoma bag changing kit in. It fits quite happily in my medium sized handbag! I have yet to use it. It took a while to gain confidence but you won't want to go out much after your op anyway so you will have plenty of time at home to get used to it.

I wear all my clothes, even my skinny jeans! 

The only thing I have found annoying is the low fibre diet especially when eating out. But I  am slowly adding new foods to my diet as time goes by.

You really don't have to let it stop you doing anything, you are lucky to have such a supportive chap!

 I have just finished my chemotherapy and have quite a few travel plans to see old friends and family that I haven't seen for a while. The coronovirus might put a spanner in the works regarding travel plans but  my stoma certainly won't .

Any problems you do have , this online community are full of ideas and support. Good luck xx

Hi . You’ve had a great reply from so I hope that’s helped with some of your concerns?

Id just like to add that there is nothing too daft or embarrassing that you can ask on here so please ask away!

I had an Ileostomy for 15 months and coped well with it. It may take a couple of weeks to get used to but you soon get to know when’s the best time to change bags and get into a bit of a routine. I always carried a small emergency kit but never had to use it and you can also get a key for the disabled toilets as they are much bigger and have a sink with them. 

I wore the same clothes that I did before although preferred ‘bigger’ knickers as the bag felt more supported. I also wore a little strappy top under my clothes in case I stretched and a gap appeared (I’m very tall!). 

Your chappy sounds very understanding and hopefully you’ll soon get to feel comfortable with the bag. I wore a lovely wrap in bed which I got from a company that is no longer trading unfortunately. It was basically a stretchy band that you wore round your tummy and it had a pocket for the bag to sit in. People have since recommended maternity bands which are designed to cover the gap between pregnant ladies clothes as they expand! They are a bit like boob tubes for tummies! I found it supported the bag in bed but still left the opportunity for ...er hem....intimacy?! Ian has suggested wrapping a silk scarf or something similar around the bag if you feel more comfortable just make sure it’s not anything too tight.

Ive attached a link to a previous post regarding stoma wear but, like I say, I carried on dressing the same.

https://community.macmillan.org.uk/cancer_experiences/ileostomy_and_colostomy_discussions/f/ileostomy_and_colostomy_discussions-forum/186234/support-clothing?Page=0#1373495

Please let us know how you get on

Take care

Karen x

Hi 

Welcome to the online community and for raising the question and jumping straight to your last paragraph, of course you do have the "what ifs" running about in your head

How do you explain it to him

How will he react 

Can we still be intimate

And a hundred and one more questions.

With so much more to be thinking about after your surgery the bedroom will be just one of situations that you will encounter that comes into our way of life where everything we do is done by trial and error and as each one of us is different what works for me may not work for you but as we are talking about the bedroom and the normally taboo subject, it really is back to experimenting, the awkwardness of being young again comes flooding back, the clumsy fumbling and finding the correct position, oh so much to worry about just to show your friend that you love him, remember that

Humour conquers all and if it doesn't fall into place the first time, laugh it off, have a cuddle, don't try to analyse the situation, wait for a little while and try again.

But what can you do to set the mood?

A nice vest that comes just below your stoma bag or a nice scarf tied round your waist.

Don't expect to be able to go all the way immediately when you return home your body needs to settle down ask your stoma care nurse, whilst you are waiting take the time to practice the art of kissing, cuddling and the touchy feely acts, the fun bits.

The first view times you may feel a little bit of discomfort, After surgery, many women experience vaginal dryness. Try a lubricant, or ask your doctor about other options to treat vaginal dryness.

In the next few weeks you will have different feelings about having a stoma, the main one being will people know that you have one, from the outside no one will know your bodily features should remain the same, modern pouches are almost invisible through your clothing.

Who do you tell, that is entirely up to you who you tell and when but having a stoma is nothing to be ashamed about, hundred of thousands of people get one every year and afterwards in the main they, we, all have the same thing in common, our stomas have given us a chance to an improved life which is far better that the alternative.

No matter what question you have on any subject, you have found a great place to ask it right here, no matter how trivial or daft you may think it is, just jump straight in and ask it, someone will have an answer for you, but bear in mind we are different, we have many different ways of solving of problems which we found by trial error, there is no right or wrong way to being an ostomate except the one that works for you.

Any questions about having a stoma, products to use, out and about with one, physical and intimate matters and just generally living with a stoma you need look no further than he Ileostomy, colostomy, urostomy and any other stoma support group the one stop shop to find your answers it is open every day of the week, very early until very late and TheBodach is always about to answer your questions on ANY subject.

You'll be surprised how many of us have had the same concerns at the beginning..

Ian

CC

Hello nan-nan,

I have a stoma which I am hoping to have reversed.

When I go out in addition to the stoma changing kit which I've never used out and about  I take wipes and a bin bag. I use the bin bag to tuck into my waste band to protect my trousers from splashes since I empty the bag standing up.  There never have been splashes but you never know.  As a belt and braces approach I take a a spare pair of jogging bottoms as well.

re: intimacy etc. Hannah Witton, who has a stoma, talks a bit about that on YouTube.

AEC

Hi nan-nan

I am a 49 yr old guy and married to a wonderful woman but I also feel abit like will my wife wanna cum near me and want to get intimate. After my original tumor removal surgery and the recovery from that then I started chemo and had the issues around wearing protection (which I have to say I don't like due to the fact I never have had to wear anything over the yrs). Now I have an Ileostomy of 5 weeks which was totally unexpected as my profile explains so now recovering from that and restarted my chemotherapy too last week and have another 12 weekly doses left of a total of 30. So basically since original tumor removal surgery on the 30th July 2019 the closeness and intimacy is difficult to deal with at times. But with the love n support of my wonderful wife we are getting through this so with the love and support of your partner I'm pretty sure you will too as you deserve happiness in your life like all of us.

Regards Mark

Hello

I had a temporary illostomy in October and I was absolutely dreading it , it's a big change in your life . At first I didn't look at it for 5 days in the hospital but the stoma nurses are wonderful in helping you cope with it , I have to say I was shocked when I first saw it coming out of my stomach ( I'm a bit on the squeamish side) I don't want to gloss over it and say it's easy as this will only make it harder for your, my husband watched and learned the changing of the bag procedure and helped me in the early days. I'm pleased though to say that 5 months on I'm on chemotherapy  at the moment things are a lot easier, I wear all my old cloths some tight fitting, nobody can see it , but I am not really bothered if they do and am quite happy to show people if they want , I try it after swimming with the communial  hairdryer !  I go swimming, walking and yoga. They will provide you with support belts on the NHS for activities. I have really surprised myself to be honest , what I'm really trying to say is it will become manageable just follow the instructions about diet etc. I was really really dreading mine but now look at it as a life saver

Wishing you good luck and positive vibes

Love Peacock62 xxx 

Thank-you for all your replies,after reading your comments its made me feel a bit better, yes it will take some getting used to, but hopefully i will manage it x.