Newbi

[Ash0507]

Hi I'm new and I haven't got a stoma as yet but they want to do it as the next step I have slow transit and prolapse plus twisting ans tried all meds. I'm terrified and need advise what it's really like living with it, changing, smell etc I'm so paranoid I will get comments to the point I don't like the idea of it. Please help

[Kinsey]

I’ve had my ileostomy for 7 years now. It took some time; but, before too long it became just part of my normal routine to take care of it.

I change my appliance twice a week. It takes between 15 minutes to 30 minutes, depending on how active my system is at the time.

I don’t have trouble with smell often. Once in awhile, I notice my pouch is smelly, so I change it sooner than normal. I use a 2-piece, so I can just take off the pouch and put on a new one pretty quickly. Even when I smell it, no one else has seemed to. My husband is the type of person who would definitely let me know if he did.

I really think most people with ostomies live pretty normal lives after a period of adjustment. I think you’ll find your life is much better than what you’re dealing with now.

Becky

[Ash0507 in reply to Kinsey]

Thank you for your reply. What is a 2 piece? I am worried about changing it in public and people commenting on the smell of changing it. I know I shouldn't worry about what people think it's just hard to get my head around, and scared of it. I've been reading about mucus balls and that sounds awful does that happen? I know it's what's best for.me as.its hell now to live like I am and I have to be on my own most of the hospital visit as it's in London and I'm miles away so too expensive for my wife to stay in accomdation which is also scaring me that o have to do it alone too

[Kinsey in reply to Ash0507]

There are 2 different types of appliances. A 1-piece is one where the wafer and pouch are all one unit. A 2-piece has 2 separate parts: the wafer that sticks to your skin, and the pouch that you attach to the wafer. So, with the 2-piece, you can leave the wafer attached to your skin and just change the pouch.

I’ve never had to change it in a public place. I’m not saying it won’t happen; but, it shouldn’t happen often for most people. There are things you can do to reduce the odor; drops to put in your pouch, sprays for the air (I like M-9, which I buy on Amazon), and even charcoal pills you can take that people say work great. (I’ve never tried them myself).

I have Crohn’s Disease. I didn’t really have mucous “balls”, although I guess that happens. I had bloody discharge because of the Crohn’s, so I had my rectal stump removed about 3 years ago. Things are much better now.

I’m lucky; my husband was able to be with me during both of my surgeries. I’m sorry that’s not possible for you. Hopefully you won’t need to stay in the hospital too long.

[Ash0507 in reply to Kinsey]

Thank you for answering and put my mind at rest a bit. I think the 2 piece would be better for me if that's to go by. She will be there for the surgery but not the stay, how long was your stay in hospital? What happens after surgery with eating etc x

[Kinsey in reply to Ash0507]

I was very ill before my surgery. I was sent by ambulance on an 8-hour trip to stay at the hospital until they could fit me in for surgery because my local doctors didn’t want to try to get me through until then. So, my recovery time was probably longer than most people; don’t take my experience as the norm. I think I was there for a couple of weeks after surgery; my memories of that time aren’t clear.

I remember being on a low fiber diet for a couple of weeks of weeks after I came home. At that point, I went back to the surgeon for a checkup and he said I could eat whatever I wanted after that. I still have to avoid most raw fruits and vegetables because they can cause blockages. A lot of people with ostomies can eat those without any problems, though; so it’s a very individual thing. If you have a colostomy, you’re less likely to have trouble with foods than with an ileostomy.

Like I said, I was really ill. It took 6 weeks before I could go back to work part-time; and probably a few months before I got over the weakness, etc. If you’re strong going in, you’ll recover quicker.

[Ash0507 in reply to Kinsey]

I'm sorry you had to go through all that it must have been scary and a worrying time for you all.

They want me to have an ileostmi as it's my large bowel that does work, at the moment I'm bleeding a lot but it's not enough for them to worry but still worries me If you get what I mean

[Ash0507]

Sorry to pester again. We were stuck in 4hr traffic jam and what would happen if I needed to change? Do they seal so it won't stink the car out or don't you have to change it that much? I really appreciate your advise

[Kinsey in reply to Ash0507]

Unfortunately, there’s really no easy way to deal with that kind of thing. Luckily, I’ve never had it happen.

You should always be prepared, though. Carry a change of clothes and the supplies you would need to do a change, including some zip-lock type bags. I’ve read about people doing it on the side of the road. Some people carry some kind of recepticle like an empty paint can to use.

It’s like any medical emergency. You deal with it the best you can if it happens. Try not to worry too much, though; unless you’re very unlucky, it shouldn’t happen often, if ever.

[Ash0507 in reply to Kinsey]

Thank you, we have a lot of motorway hold ups here due to idiots and roadworks as everywhere.

I.will carry a change of clothes anyway and follow your advise with zip lock bags. To be honest if it was an emptying one I would do it at the side of the road too and like you said always bring things with me. Do you get ones where you take the bag off everytime you change?

[Kinsey in reply to Ash0507]

No, I use drainable pouches. I empty pretty frequently; I would go through a lot of disposable ones.

[Ash0507 in reply to Kinsey]

Thank you that's good to know I suppose it's easier that way. How long does a pouch last for? And how often do you empty or how long inbetween each one.

Sorry for all the questions

[Kinsey in reply to Ash0507]

I change twice a week. Some people can go longer. My nurse told me I shouldn’t go longer because I have sensitive skin.

I empty probably about 8-10 times a day. I don’t always wait until it’s very full. If I’m using the restroom anyway, I’ll go ahead and empty. I alway empty just before bed, whenever I’m leaving the house, etc.

Ask as many questions as you like. I’m happy to answer what I can.

[Ash0507 in reply to Kinsey]

How many times a night do you have to change? I'm a heavy sleeper and wouldn't want it leaking

[Kinsey in reply to Ash0507]

I’ve only woken up a couple of times in 7 years to a leak and had to change. I typically get up once at night to empty. For awhile after my surgery, I set an alarm for the middle of the night. Then I realized I was waking up on my own when the pouch got full, so I was able to stop setting the alarm.

[Ash0507 in reply to Kinsey]

My dog normally wants out during the night or im up anyway at least once so that should be ok. I will lay towels down in hotels etc.

At least it's just once I was expecting more. Is there any foods you can't eat as love fruit

[Kinsey in reply to Ash0507]

I have to be careful with raw fruits and vegetables. Canned or cooked are fine. Some people have trouble with seeds, nuts, and popcorn, but I can eat those with no trouble.

[Ash0507 in reply to Kinsey]

I guess it's trial and error, thanks for all of your advise it has eased my.worries a bit. Thank you x

[gilmerton63]

Hi, I had to have an emergency stoma nearly 4 years ago. When I was told I had one I was absolutely devastated. Would I smell, how did I take care of this thing and mostly how would I live with it. At first the lovely stoma nurse would come round and change it, each time she would say, you need to learn to do it yourself. To be honest, I didn't want to learn how to do it. In order to get home I had to get on with it. So the next time she came I made up my mind I was going to do it. She did smile when I put on gloves, but I managed it and from then on I continued to care for stinka belle. It isn't that bad, you do get used to it, yeah you will have days when you feel like screaming at it, at the end of the day she saved my life. No one has ever said I smell, believe me I have family who are honest and would tell me. You will be fine, just think what would happen if you didn't have this done. If you need any advice please ask x

[Ash0507]

Thank you for your reply. I too am panicking over smell in public and home or around family as like yours they would say something and I would be really embarrassed if they said some thing.

The person I was talking to said no one has commented and rarely change in public which is what I'm panicking about and people making comments once I've emptied. Mine will be a planned stoma and tbh I'm not sure what's worse having to deal with it straight away or worrying for months about what it's like. I will get counselling but it means going to London every time which is a nightmare and very expensive for us to get there. I've resigned myself to the fact I need one just don't like the idea of it, hopefully it won't be as bad as I'm thinking it will be

[gilmerton63 in reply to Ash0507]

If mine makes a noise I just carry on as normal. Try not to make anything of it, don't draw attention to the fact it's made a noise. You are possibly the only one who knows about it. If I need to change mine in a public loo, I carry a small aerosol of body spray, that hides the smell. After a few months your stoma does get into a routine of when it works.it honestly isn't that bad. I thought I would never get used to living with one, but you do. If you need any help just ask x

[Ash0507 in reply to gilmerton63]

Thank you! What noise does it make as didn't know it did. Is it wind? X

[Howlinwolf999]

Hi, you need to talk to you doctor/surgeon and get them to fully explain exactly what the surgery involves. In my case, after around 40 years of problems, in April 2016 I had a panproctocolectomy with end ileostomy which involved removal of the entire colon, rectum and anal canal. My ileum has been brought out through my belly to form the ileostomy and all my output goes from the ileum into my drainable one-piece bag/pouch. I am glad I had it all removed as it has left me without some of the post-operative issue I have read on this forum that some people have had.

I don’t know if I am unusual, but I normally change my bag each morning after taking a shower, probably over the top but I developed a parastomal hernia not long after my surgery and I often find I get wrinkles in the part of the bag that sticks to my belly as the day progresses and this can lead to leaks and I guess like many ostomates I get quite ‘anal’ about leaks. Rightly or wrongly I was advised to empty my bag when about 1/3 full so I am emptying about 6-8 times a day, some are precautionary just before I am going out. I think many ostomates worry about the potential smell and on the odd occasion when I have thought that I can smell something my family have indicated they can’t. Normally happens when I have allowed the bag to fill much more than usual and I am sitting at my computer nose directly over the bag. Getting over the surgery only took about 6-8 weeks, the only real issue I had was that it took probably 7-8 months for my back passage to fully heal. Probably the district nurse and I were being over cautious, but I wanted to get back to swimming twice a week and the view was that until 100% healed there was a small risk of getting an infection at a public swimming pool. Whenever I go out I have a ‘man bag’ and in one compartment I keep a spare bag/pouch, wipes, disposable bag etc and I have only ever had to use the spares once, (had a leak). It is a good idea to rotate the spares with your daily usage supplies as they can become a little ‘stale’ if left in the emergency supplies too long.

Having an ostomy is not the greatest thing in the world, but, better than the alternative! There will be occasional ‘dark days’ but you soon get over them and move on. Hope your surgery goes well.

[Ash0507]

Thank you, I have had 15yrs of problems and so many laxatives etc. They want to either either a resection of my rectum to bowel but that involves going 20x a day and sore bum

Or ileostmi temporary to start then if it works permanent. He wants to eventually take the whole large bowel away and rectum and that's where the prolapse and twisting is. To be honest I'm dreading it and the leaks I'm fretting about I'm mitculas about smells and leaks but I think the 2 piece might be better for me but I will have full advise from nurse x

[gilmerton63]

Unfortunately it does make a noise. Wind noises. Certain foods make it worse, cabbage, cauliflower. Whatever gives you wind now will carry on giving you wind.if I am eating veg I try not to go out socially the next day. At home we just laugh about it. Remember everyone has wind. Ours just comes from our stoma and not the usual place x

[Ash0507]

I would be mortified if public or family as they comment on things like that. Mainly beans and veg make me have wind so may have to stay clear if not going out then fair enough. Not something I will like 😔