Any advice?

[Crohn'sGirl]

So I just returned home today from the hospital after 2 weeks. I had a diverting ileostomy but then ended up with some sort of blockage hence the two week stay. Having a bag attached to my body now is the weirdest feeling. After they took my IV out today I just kept waiting for them to say ok now we are going to remove the bag and you can head home. I am kinda nervous about this whole thing. I have a great support system in my family but they dont understand the embarrassment I feel or the way I'm scared of people "knowing" there is a bag under my shirt. I am scared about the possible smell cause as soon as I open the bag it smells pretty bad to me. I am trying to learn to care for the bag and clean it and live with it. I would appreciate any advice anyone can give me. I have a home health care nurse who is going to visit tomorrow apparently cause the hospital set that up for me, but I have some questions for those who already have a bag.
Does it always "fart" so loudly? I feel like everyone can hear it. It is like a gurgling noise when it does it
Does it always smell everytime you open your bag?
After surgery does the swelling go down enough that people really cant see your stoma?
Does it always feel like your carrying a huge weight when the bag fills up a little? I feel like I have to keep emptying it constantly cause when I stand up and its full it feels like its pulling downward.
Last question that I can think of is how long did it take everyone to heal after surgery to where you felt normal again? I have been post op for two weeks and I'm not sure that I'm going to feel normal ever again.
Sorry for the long post and all the questions I just am so scared and nervous and feel horrible tonight.

 

[Misty-Eyed]

Hi Crohn's girl. I got my ileostomy 5 weeks ago so I'm a bit of a newbie too. I don't know about you, but I had loads of mental preparation before my op. Mine is permanent so I thought that as I don't have much choice about the matter, I had better fully embrace it! I've been quite open about my bag and I don't really care who knows about my bag. I told all my friends, acquaintances and work mates and even now I've had the operation, no one has treated me any differently. In fact they have all been desperate to know that I'm ok! I just thought that if showed everyone that I was ok about having a bag, then there was no reason why they wouldn't be ok with it too.

I understand that you may not feel the same way but it's not anything to feel embarrassed about. The bag is there to make your life better.

My stoma is a lot quieter now than it was. Sometimes it will be a little noisy but usually only for about 10 mins a day after my largest meal.

I've been using some mint drops that are made especially to go into your bag that makes all my output smell like mint! Ask your stoma nurse if there is anywhere there where you can get it. It's less offending to my nose! Although the lack of my old fart smells helps!

People can't really notice my stoma anyway. I think I may get a waistband which will help to slim it down a little and I think this will also support the bag more so it doesn't feel quite as heavy as it would do normally.

I was surprised at how slow my recovery has been. But then last week, 4 weeks after my op, I suddenly felt LOADS better. Tonight I went out in jeans, a top I'd normally wear and spent the evening with some friends just as I would of done before my op. My friend said she wouldn't of even noticed I had had anything done. I did have mine laproscopically though! Just take your time, you'll get there!

Try and stay positive. It's a big change that is going to take a while to get used to. Just try and think of the positive parts of it!I hope you feel better soon.

 

[PsychoJane]

Hello Crohn'sGirl,
Let see, Im 26, and I have had my ostomy for 12 years now so I'll try to answer you to the best of my knowledge and if ever you have other questions feel free to message me or ask them here, Ill be happy to help

-"Does it always "fart" so loudly?" As misty-eyes said, it gets better. It is noisy at first and I believe it might be related to the inflammation of the surgery. Mine get noisy when I have inflammation from the crohn (I was in remission for 10 years but past 2 years have been rollercoaster style and therefore, I've re-experienced the noisyness of my ostomy).

-Does it always smell everytime you open your bag? No, it does not always smell. It really depends what you eat. I found that anything that is related to cereals( wheat, pasta, etc) makes my bag smell. Food with additive, processed, fast food, well all the bad stuff, makes it smells. I recently changed the type of food I eat, cutting dairy and gluten foods and now it almost never smell, which is fantastic! I understand that after surgery wouldn't be the best moment to even consider that approach though. Therefore here are a few tips for the smell: the drops, as misty said, you can crush aspirin into the bag too. You can also try putting a little bit of peroxyde in it. I also found that drinking coffee kinda reduce the smell.

After surgery does the swelling go down enough that people really cant see your stoma? No. I mean, if you wear really thigh clothing, it can be somewhat noticeable but only those who knows that you have a stoma could be incline to be telling you that it is recognizable. Like my family member would warn me if there would be something noticeable but that pretty much never happened in 12 years... You can wear bathing suit without too much problem as well. I won't pretend that it is the same as before, but it is totally possible to life with it. And I mean, I don't dress differently than any other and I follow fashion except the super low-rise pants. =)

-Does it always feel like your carrying a huge weight when the bag fills up a little? The key is to empty the bag often. Also, you don't want to use the big size of the bag. I don't know if this is what they gave you after the surgery, thats what they did with me and it was wayyyyy too big in my opinion. Not only I had the impression it could almost reach my knee but it was heavy and did create discomfort as you said. Therefore, I would suggest you to take the "throwable" bag if I may say and I think that some smaller are emptiable too. I found that emptying the throwable one is the most cost-effective solution (that is if you don't have insurance - otherwise you just go for them and don't care). Some line are really interesting and comfortable. I quite like the Sensura.

-Last question that I can think of is how long did it take everyone to heal after surgery to where you felt normal again? Unfortunatly, it's been too long since Ive had the surgery to really remember... but I believe after a month or two I was feeling pretty good and functionning decently. Then the next 10 years were great. I was in perfect health! so it did worth thoses years of peace!

Good luck with everything and I hope you feel better soon!

 

[Terriernut]

Welcome to the forum firstly! Two weeks post op is very early days. You dont say whether it is temp or permanent? Have a good look around this sub forum please. You will get alot of advice and help here.

Does it always "fart" so loudly? I feel like everyone can hear it. It is like a gurgling noise when it does it: Stan was very noisy for the first 6 weeks, and gradually got quieter.

Does it always smell everytime you open your bag? The drops Misty-Eyed mention help, however again I think it smells worse the first few weeks. It will smell depending on what you eat.

After surgery does the swelling go down enough that people really cant see your stoma? Yes, especially if you had open surgery, it will take up to 4-6 weeks for the swelling to go down.

Does it always feel like your carrying a huge weight when the bag fills up a little? I feel like I have to keep emptying it constantly cause when I stand up and its full it feels like its pulling downward. As mentioned, you need a smaller bag. Also, tuck it in your underwear as well.

Last question that I can think of is how long did it take everyone to heal after surgery to where you felt normal again? I have been post op for two weeks and I'm not sure that I'm going to feel normal ever again. I had open surgery and mine was an emergency. I almost died. It took me 3 months post op to feel 'normal'.

 

[Crohn'sGirl]

Thanks to all for the information. It is so nice to feel like I'm not the only one going through this. TerrieNut the surgery is temp. I was lucky enough to have that option so we shall see how it goes. I think I will look into a smaller bag. They gave me one from the hospital and it does feel like it could go down to my knees. There are a lot of choices out there I've found but I didnt know what to start with or what direction to even take. Again I really appreciate all the help and advice. It makes dealing with this so much easier. I just turned 24 while in the hospital and I am a social worker with a full time job so this surgery was a bit emotionally for me to handle. this forum makes me feel so much better.

 

[Misty-Eyed]

I've been wearing a midi sized bag is that helps! It comes to just the top of my leg. It's large enough to not fill really quickly and small enough that you're not aware of it all the time. I often tuck it in my underwear too

There's always people in the stoma subforum though. They've all really helped me coming to terms with everything. Not nice having your birthday in the hospital though! You should plan something nice to do once you've recovered (although I'm aware that you have no idea how you'll feel on any date. Trying to plan stuff is a nightmare) even if it's just an idea of something you want to do when you're ready. Then you'll have something to look forward to

 

[LOSTnut]

Hello, Crohn'sGirl, and welcome to the club and the forum. I don't have much to add to what is already said, but here goes:

I have a temp Ileo from emergency surgery after a failed laprascopical resection. So, in the end I was also cut open from belly button to pubic bone.
My healing took pretty much 5 months but I also had to muddle through it by myself because I couldn't find a WOC nurse to help me through ... blessed forum here helped trememdously.

My output is pretty fluid all the time and I try to keep it that way by way of food intake ... no chips (for example) for me because they tend to thicken the output and pancake, which is very uncomfortable for me. And, my output in general only smells really, really bad first thing in the morning. The rest of the day is pretty ok, although it can take on the smell of what I have eaten.

As far as the bag goes, my application does not offer a smaller bag but I help that with a binder clip and roll over the very end. Somehow, it also helps me a bit mentally for the added security. And, so far nobody said anything about a bulge in a weird place when I am too busy at work to empty it promptly. Then again, I wear loser, longer tops to help cover ...

I also noticed the gurgling noises and most of the time it is a sign to eat something ...I just love the Sweet Chili ricecakes.

Well, happy belated birthday and hopefully the once next year will be much better.

 

[littlefreebird]

i got my ileostomy around 16 weeks ago and i remember being at the stage you are at now. don't worry you will feel tons better soon!! i felt awful post-op, it wasn't until around week 5 i started feeling myself again so just be patient with yourself.
noises and smells from the stoma/ bag are perfectly normal and change constantly, it all depends on what you have eaten, you'll notice what foods do it more for you as time goes on.
as for appearance, you may find that you can wear the same clothes you did before surgery (i know i can), i have never noticed anyone looking at my tummy, i feel i can wear tight clothes without it being noticeable (if the bag is pretty empty).
i wear coloplast bags, size: mini, they are great- i definatley felt more confident wearing these rather than the bigger ones i wore in hospital which made me feel really unattractive.
After surgery your tummy muscles are weaker so the smallest bit of weight in the bag can feel heavy but they ummy muscles get stronger quite quickly so you'll find this feeling reduce over the next few weeks. also, the scar after the operation can make the tummy feel quite heavy when standing upright.
i really hope you feel better soon, it will all be worth it in the end !
all the best, hannah.