Ileostomy

Hi and welcome to the online community and to the Ileostomy, colostomy and stoma support group and I'm extremely sorry to have you join us in poo corner.

I see that you are, because of your ileostomy, having trouble getting out of the house.

Having any type of stoma should not have this effect on you and in fact should have the opposite effect and give you the ability to carry on with your life exactly as you were prior to the diagnosis of your anal cancer.

You haven't told me how long you've been an ostomate as many of your problems may just be down to being new and will soon resolve themselves.

My way looking at having a stoma is that you should own it and it should not own you.

Let's take every point you've made individually and see if we can throw some light onto your concerns.

How you look.

Most modern pouches are so designed that they lie flat and fit the contours of your body and should not make much difference to your appearance unless you have a hernia already which can be controlled by wearing support garments.

Noises.

I am assuming that by noises you are referring to wind, some stomas can be very vocal but you can do things to combat them by watching your diet and avoiding foods that are known to cause wind. You should also pay particular attention to how you eat and only have small meals frequently, don't rush your food and try not to eat and drink at the same time or eat and talk during a meal as both talking and drinking can cause wind.

If you're out in company and your stoma joins in the conversation don't be embarrassed laugh it off and make a joke if it, there maybe another ostomate sitting in the group, you just don't know.

What to wear

Providing your don't wear tight fitting clothes you should be able to wear almost anything you were wearing previously providing you don't wear anything that could cut into your bag. Wearing loose fitting tops over your skirts or trousers should disguise the bag very well.

Bag filling up.

As you have an ileostomy your output will be watery to porridge consistency and will cause your bag to fill up quickly and you should get into the habit of emptying your pouch at every opportunity you can if not just to empty out the contents but to release any build up of wind in the process.

There are products and foods that can help to thicken up your output if that is causing you a problem.

Out and about

Carry an emergency change bag with you with spare pouches and everything else you use when you change pouches.

In the early days many ostomates carry some items of clothing with them just in case of emergencies.

If you work in a fixed location ask your manager if you can have some extra locker space to keep a change of clothing in and supplies of pouches etc. But you should note that whilst you should not be ashamed of being an ostomate it is up to you who you tell and don't tell. Personally I tell everyone I wear a pouch I've got nothing to hide except my pouch.

Have you got a RADAR key and a Can't Wait Toilet card?

Leakages

These, unfortunately, can be a problem, especially in the early days but there are things we can do to minimise them.

Leaks normally occur because the hole in the base plate is the wrong size and by that I mean either too large or too small, the hole should fit around your stoma with only a very small gap all round and should not be too small that the baseplate does not lie flat in your skin and these things can be avoided by measuring your stoma size regularly, if you don't know how to do it ask your stoma nurse for help. But other things can be done to keep leaks down like wearing seals under the baseplate, making sure that the baseplate is attached securely to your skin all round or by adding flange extenders all round. It could be that your skin has some dips and creases which will stop the baseplate making all round adhesion to your skin and this can be rectified by applying stoma paste to fill up the creases and dips.

Trying to wear a pouch for too long can also causes leakages if you need to change daily then change daily, the "normal" monthly issue is 30 bags or 30 bags and 30 baseplates but you need/use more it should not be a problem getting extra supplies just speak to your stoma nurse/GP.

Doing things you like.

Having a stoma should not affect the way you work except that you may have to visit the toilet more frequently but in most jobs that should not be a problem 

Exercising

You should be able to resume exercising after about 6 weeks and depending on the type of exercises you intend doing you should consider wearing a support garment to stop a hernia forming. But activities like swimming, running, horse riding, dancing, playing team games (football and rugby etc) in fact anything you liked doing previously are still possible and this is a good time to look at starting new activities. Don't let your stoma hold you back.

Jobs that Ostomates can do

The following occupations have ostomates doing them - Police Officers, Bus Drivers, Factory Workers, Office Workers, Manual Workers, Teachers, Students, Sports People in fact I can't really think of an occupation that an Ostomate can't do, I will be honest it might mean a few changes to how they do their jobs but by making a few changes and compromises life goes on but you have to want to be able to do them and there is no reason why you can't. Even starting a family is possible.

Etc etc etc 

Would need more information to give you some advice on this.

I am willing to work with you to help you overcome all the problems you are having and if you keep talking to me I'm sure that together we can find the solution to everything but you must remain positive and be determined to regain your old life back and there is absolutely no reason for you not doing so, remember that having a stoma was not the cause of your problem it is the cure and by having surgery and wearing a bag probably saved your life which is still there to be enjoyed.

There is a little game you can play when you are out in town, shopping, working or at the gym, look around you and spot the ostomate and I guarantee you'll find it very difficult to find someone because we look just like everyone else.

I am going to ask you to keep in touch with me and share your problems and we will work together to give you back your confidence and resolve any problems you have. You can ask me anything from pouch recommendations, clothing, exercising, what foods do to us in fact anything even the topics you would never dream you would discuss with a stranger, together we will get you out of the house and back to enjoying life. We'll even get you back to doing the chores you hate doing.

Apart for a few days this week (and you might not even notice I'm absent) I am always about so please keep talking to me I know we can beat all your problems and get you being YOU again.

I'm the Bodach and I live with a St●ma!

Keep in touch please.

Ian

Thank you so much for taking time to write to me I. So much details, my Ileostomy is fairly new, it’s 3 weeks old, probably it’s normal to have problems with it, I think I should see my stoma nurse as the skin around is getting sore, the gap must be causing it. You are such a brave soul going through lots of operations and procedures and staying strong, I’m the opposite, 

Hi

It's always a pleasure speaking with members and trying to help them.

As you're only 3 weeks in your stoma nurse should still be still be in contact and looking after your stoma and giving you advice and help.

If you're experiencing leakages it will be likely that it will result in sore skin but we have ways of protecting the skin and please excuse me if I try to tell you what you are already doing.

Use a adhesive remover spray or wipes to help detaching the old pouch will protect the skin.

Wash the surrounding skin with warm water and a wipe, NOT wet wipes. (They could contain something that would stop the baseplate sticking)

Apply a protective film on your skin which should also make your pouch stick better and as the name implies protect your skin.

Warm the flange/baseplate before applying to make it more pliable.

Hold your pouch to your skin for at least 30 seconds to ensure a good seal is made.

My stoma nurses suggested this to me last year and I think they are excellent

BW2 Fusion (Combined Barrier Film and Adhesive Enhancer)

And they do exactly what the above says

If you would like to try the product they will send you samples if your complete the attached request and send it off to them.

Independence Products sample request page

If it hasn't been mentioned to you Please remember if you feel a sneeze coming on forget covering your mouth cover your abdomen with both arms and hold it in and this will help to prevent a hernia.

When you see your stoma care nurse please let me know how you get on.

If I can be of any help with anything at all please just shout out my name and I'll be there to answer any questions.

Hear from you soon.

Ian

Hi lakita, hope your holding up ok? it sounds like your worrying quite a bit. I'm 35 and had bowel cancer surgery on the 10th of may. I too was fitted with a stoma. To be honest it wasn't planned and was quite a shock when I woke up with my new accessory attached to my side!!!! 

At first i was worried about my stoma as in will people know, could they see it, does it have a smell. what will I wear but know I think ive got my head round it. 

i bought loose pants from next. if u google casual pants for women they to come up. they was loose enough that I was comfortable with my tummy and let my swelling go down even tho I do think its still a little swollen. 

now i have gone back to wearing skinny jeans ive just gone up a size in them so they are more comfortable round my waste. no one can see my stoma and im totally fine with it. 

mine used to trump :s a lot at first but that's not happening really now so that's good.

i have had a few leaks but only a few and at home or with family really. I make sure its a fresh one every morning when im dressed and I make sure rub my finger round the outer sticky part and the internal part where the cut whole is over the top of the bag. since doing that ive had no issues for weeks 

hope ur ok. don't worry u will get there xx 

Thank you so much, it’s so worrying the younger generations getting this bowel cancer , apparently in recent years it’s increased in uk, do you think the meat we eat caused it? Are they going to reverse your stoma? Have you completed your chemotherapy radiation? My case I just have stoma, starting with chemotherapy radiation next, then they remove tumour and bowel I hope! 

Hi, I'm in the same boat. Had my ileostomy on 25th April and at first, he was very noisy and with very watery output. All has settled down now and things are a lot quieter. As my cancer is reoccurant ovarian a stoma was not something I was expecting, but the surgeon said it was significantly increase my life expectancy, I couldn't refuse. I'm 52. 

I too struggled with the thought of going out etc. at first, but now I'm getting back to my normal life, although slowly. 

I have my first chemo yesterday and am concerned that my output may become problematic, but so far so good.... hope I haven't just jinxed it . 

Looks like we can support each other over the next few months in it chemo/stoma journeys.

Ann xx

I'm 61 and also have had an Ileostomy.I may be fortunate in that I care not a jot about how I look,or the noises that emit from my bag,I am delighted to still be here,certainly I am living a life now with lots of changes ( none of which I wanted). In the 14 weeks since being fitted with the bag I have had teething problems. The one thing that has got me through is that I have no option but to change, no if's or but's (no pun intended) but you will most certainly get there in the end, be positive and embrace your new life, remember though, you are the same person you always were. best wishes.

My outlook in my journey is simply

I own my stoma, it doesn't own me

and I live my life with a stoma

Ian

Hi Lakita, SeekNdestroy, Wilma, Bagman and any other newbies!

I still think of myself as new to this - I had my ileostomy at the end of February due to metastatic breast cancer. I have spent much of the time hating it, resenting the way it looks and restriction to my diet and activity. I've had my fair share of leaks and a blockage or two, lthough fortunately nothing in public.

However  when I look back on my progress over the last six months I cant believe I'm the same person:

I wear pretty much what I want, longer/looser tops over skinny Jean's, tunics and dresses with front pockets to disguise the bag. A friend suggested I got a maternity tube (not sure what it's really called) - t-shirt fabric things designed to cover the bump between waistband and shirt/top. I've got several colours and they are great.

I'm back to yoga, walking my dogs and horse riding! I've learned to recognise a pattern in my stoma activity and found that midmorning through to lunchtime is a low output time and therefore a good time to get out and do something. It's also when I have more energy and come home for an afternoon rest (I'm on permanent chemo). I haven't tried swimming yet, but have just bought some high-waisted, roosh-fronted swim shorts to wear with tankini tops.

I was very nervous about days out and staying overnight but have travelled into London with my daughter to stay with brother in law, we had a day out at Wndsor horse trials and two nights in Londom with him. Grateful to my toilet card and disabled badge to bypass queues and use disabled loos.

My husband and I took the children to Normandy in June for 4/5 days including overnight on the ferry. We're currently in Dirset with family and going to Edinburgh Tattoo and Cornwall over the next few weeks.

I wouldn't have thought all this possible back in February.!

I am conscious of what I eat, but am gradually branching out and experimenting with new things - probably had too much fish and eggs over the last couple of days if my ballooning and vocalisations is anything to go by! Oops - great to have a dog to blame for the noises and smells!

So I just wanted to give you some hope and  confidence that things will get better, you may never come to love it but will learn to live with it and find was to get back to a new kind of normal.

All the best for the coming months.

Daen x

That's Dawn not Daen!!!!