Getting comfortable with my ileostomy

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Pointy_ears

Pointy_ears

Joined
Sep 25, 2012
Messages
209
Well it's been 4 weeks since my operation and i can tell I'm on the mend because I've started to become very self conscious of my ileostomy bag and getting comfortable with it. I find myself constantly wanting to change the bag and I just can't seem to find a comfortable or discreet way of hiding it under my clothes? Any ody else had his kind of experience and what did ou do abou it?
 
Are you out and about already? I find wearing sweats covers about everything!

Dont be worrying about changing your bag all the time. What is causing you to think you need to do this? Is there something we can help with?
 
Yeah I tried to get out and about as quick as I could, trouble is I'm a shirt and jeans man. Also I didn't know if support bands help? As for changing the bag, my skin feels sore under the adhesive and I'm very aware of when junior is spurting! Which feels like its more or less all the time. Not to mention I've been getting a lot of gas!
 
Sweat pants were all I wore for the first 5 or 6 weeks after surgery. I then started wearing loose jeans with the bag tucked in. However, now I wear the bag on the outside of pants, as I just don't like the whole restrictive tucked in business. My pants sit lower down on my hips to accommodate this and this further accentuates my lack of butt, but I wear longer shirts that hide the bag in front and the lack of butt in the back.

Are your bags not comfortable or are you concerned about potential leaks..?
 
You responded before I got my question out.

Is your skin really red all around where the bag sits or just sore close to the actual stoma?
 
Bit pink and and sore under the adhesive, I don't like the whole feeling of the bag tugging either. What do you do about the whole bag puffing out under shits?
 
You may be allergic to the adhesive on the particular brand of bag you are using. There are a ton of different brands and designs of bags, and your stoma nurse should be able to help you find one that will be more comfortable.

As for the bag puffing up under shirts, the gas will go away somewhat with time as your body adjusts and won't be such a big deal. You will also be able to better determine what is causing the gas as you experiment with food over the next few months. In the meantime, there are bags available that have filters at the top to let the gas out. The work pretty good until the filter gets wet. You can also "burp" the bag by undoing the clip and letting gas out when it gets real full.
 
There are also bags available that are worn with a belt and that would help with the tugging on skin that you are uncomfortable with.
 
Thanks :) knowing that it'll settle actually helps a lot! Hopefully my clinic appointment with the stoma nurse is soon and I can ask her about all this too. I just can't wait till junior decides to settle down, the really runny bags are getting annoying. Anything I can do to help settle the stoma?
 
Quick update, I went clothes shopping today and had a really good day! Junior behaved himself and I have some nice new low rise jean and lon shirts and cardigans. Going to go see my stoma nurse in the week and see what she can suggest in terms of different bags etc. thanks all for your support.
 
I just ordered a free sample of a support band from coloplast. Waiting for it to come in the post. But I might give these guys a go. My GP is a tight ass though cant see him prescribing this kind of thing
 
You might try more potatoes--baked without the skin, crisps, mashed, etc., bread, pasta, rice, bananas and applesauce to thicken up the output. Some people also have good luck with jelly babies, cheesecake, marshmallows and stuff like that.

Potatoes and applesauce work wonders for me, but everybody is different.

Excellent news on the clothing spree!
 
Retail therapy was just what the doctor ordered lol. I've started with gummi bears marshmallows and bananas. So far that seems to be working. But I'm just wondering if the exercise helped because I wasn't continuously snacking. Damn steroids!
 
Pointy_ears said:
I just ordered a free sample of a support band from coloplast. Waiting for it to come in the post. But I might give these guys a go. My GP is a tight ass though cant see him prescribing this kind of thing
Click to expand...

Well you're allowed up to 3 support garments a year on prescription, so he doesn't really have an excuse not to. But the shallow waistband I got is only £9 anyway, so can't really complain at that!
 
Also, are you taking any loperamide (immodium) at the moment? I take about 4 capsules a day in order to thicken things up. It's going to take a while for things to settle down anyway! 4 weeks post op isn't a long time!
 
I don't take anything, all I was prescribed when I left the hospital was my tramadol and steroids. I can't wait to be off both the side effects are annoying.
 
Hey!
Ive had my ileostomy for over 5 yrs now and at first, being a girl and being into the latest fashion trends, I was nervous that I wouldnt be able to wear what I normally liked to wear. Well I got over that real quick. At first, I thought if I wore skinny jeans or a tight dress, people would see a little bulge and wonder what the heck it was. But then I realized, I was the only one wondering about it and I was the only one who noticed it. It wasnt as a big of a deal as I was making it. Really, no one is going to notice it (unless its completely full), except you! So start by wearing something your comfy in, like sweat pants or something, then when you feel a little better, go back to the jeans.I promise, no one will suspect a thing. And you dont have to change it all the time. Only if its getting puffy. I change mine about 2 times a day, and thats enough. Good luck and if you have any more questions Id be happy to help!
 
:) thanks, it's nice to know there's something out there that will at let help with some support. He surgeon placed junior just slightly off centre and having a bit of a belly anyway, I thought he'd be really noticeable. I suppose it doesn't help going through a break up at he same time as trying to recover. I placed my order so we'll see if the band helps. But I was in my jeans and a polo shirt earlier and I hardly noticed Jr all day, well unless it was empty time.
 
Hi
I had a right hemicolectomy and ileostomy on the 10th Sept, amongst other things I was given Loperamide 2mg up to 4 times a day and Dioralyte sachets 1 to be take after each loose BM to keep me hydrated.
Both of these have really helped, my surgeon also recommended I buy a cheap jug to keep measurement on the stoma output (I know it sounds yuck) anything more that 1litre a day and I should contact him urgently.
I am in the process of trying to get some support garments some from Comfizz and Vanilla Blush out of my GP. Some types you seem to be able to get upto 6 per year and some 3 per year...
I have been getting lots of sample as the bag I was given at the hospital are 'maxi' which are really big for me being 5'4. there are load of companies out there that will send sample. I can send you a list if you would like.

Take care
 
You're doing amazingly well then if you're going through a break up AND recovering! I would of been a mess!!

See!! You're getting used to 'him' already! Impressed you can wear jeans! Before my op, my hips were (and still are) narrow and I always had to wear a belt with jeans to stop them from falling down. Wearing a tight belt with my bag is a big no! It either cut my bag off or if I put the bag over the top, it rubs on my base plate. Grr! But I have discovered jeggings!! Look just like jeans but ate stretchy around the waist! Hope they stay in fashion for a while or I'm going to be stuck!!
 
I just deal with each day as it comes, I guess all this just works its self out in time. I'm sure you wouldn't be a mess misty! You seem to me like a strong confident person, not to mention a little cute. I'm sure leggings/Jeggins will be around for a while. I'm currently wearing skinny jeans from river island because they're made from 'stretch denim'.
 
That's the best way to be! It is still really early days though! Aww well I'm glad I'm coming across like that!! :)

I think I lived in tracksuit bottoms for about 2 months after my op! Luckily work has a very relaxed dress code! So you must be feeling comfortable to be wearing jeans already. But yes, stretch denim is one of the best clothing inventions!
 
Yeah I know, maybe I expect too much from myself? I really don't know. But talking to the guys and gals on here helps a lot! You do come across very well! :) I wish I had some one like you to talk to before the operation so I was fully aware of what was out there before Jr popped up.

My work place has a relaxed dress code too, so if I'm having a bad or lazy day I can always go in with trackies on. Still not completely comfortable, the trackies came out at 7pm after being dressed from 11.30 and now it's Pj's and slipper socks till bed time :)
 
Well expecting too much from yourself is natural, I think. I kept beating myself up about still being in loads of pain and not being able to get up off the sofa after two weeks. But in reality, I'd just had an entire and huge organ removed from my body. I'm not really sure why I expected to bounce back so quickly! Hind sight is a wonderful thing though.

Well I'm glad I do! I think my username is a bit misleading, I was in a bad place when I first joined (like most people, I think)! Quite the opposite now! How come you only found us now? This place really helped me when I found out I needed to have my op and going through it all. There's some great big, massive thread somewhere that I started the day before my op leading right until a few weeks afterwards, if you ever feel like some bed time reading! Haha!

Are you back at work already then?? My work are so brilliant about my Crohn's. I even landed up in hospital for a week two weeks after I first started!! In return I tell them all the gory details! My pj's come out at 7pm too and I'm not even recovering anymore lol. I'm just lazy ;)
 
Yeah I think reading 'two week hospital stay, two weeks then back at work.' On another forum for the same op didn't help. I forgot I was under weight, septic and had low potassium levels when I went for the op. sounds like we were both confident in our ability to heal :) but I agree with you hindsight is a great thing. I would have cut out caffeine and nicotine a lot sooner if I knew what they were going to do to me.

I found you when I was first diagnosed, I think I was too scared/embarrassed about the disease to want to deal with it. I think the surgery was the kick up the arse I needed. I find it hard to think of you as the one with all the concerns and questions, maybe one night I'll look it up.

Not yet another 3 weeks I'm wrote off for. But I can't wait to get back sick leave is sending me stir crazy! Nothing wrong with early pj time. Could imagine you having the big fluffy teddy bear kind... Maybe even a onesie :p
 
Yeah, my surgeon said I'd be back at work within 3 weeks! Wish he'd of been more realistic! Glad you're not back at work yet!!! Make the most of it! I ended up taking 5 weeks off in total including the week I was in hospital after the op. Even then I only started doing some hours from home and then slowly built up my hours at work. I think I started back full time after Christmas. I was pretty ill when I came home though considering I was pretty healthy before my op. I was in so much pain and completely went off food (and I LOVE food). I turned into a skinny rake! Well luckily I've never smoked (VERY bad for crohn's) and I hardly drink due to liver damage from taking methotrexate, so I was ok in that department!

Being scared is understandable. Everyone gets sympathetic with me when I tell them I've had Crohn's since I was about 8, but now I don't really know any differently and so it's just normal for me. I'd prefer to grow up with it rather than having my adult life turned upside down. Glad the surgery helped in that way. I was lucky in that I went 18 years without any! I think talking about it does help though. I think sometimes I talk about it all too much! lol

Well you can read my op journey here; http://www.crohnsforum.com/showthread.php?t=23535
It goes from the night before to about a month and half afterwards! Unfortunately my journey isn't over yet.. my poor bum wound STILL hasn't healed and I'm due for another big op from a plastic surgeon. Another week in hospital and a month off work he said :(. Plus I may end up having a scar all down my leg! Still, it all makes us stronger, right?

And I may happen to have a 'teddy', he used to support my stomach after my op! That's my excuse anyway! I wouldn't go as far as a onesie though!! lol
 
Thanks for the link, that's tomorrow planned out :p I'm not scared of eating, still on 35mg of pred I feel like I can't stop some times.

I can't imagine what it must have been like to grow up with crohns, but I can imagine how it's helped your adult life knowing what could happen.

Sucks to hear you have to go back in, but if you need some company while you recover I'll make sure I grab some Internet time just for you. Another scar, another story I guess. But I know you'll manage :) guess that means no bikinis next summer? :p

You got a teddy? They gave me a pillow made of towels! :-S and that was at the 'state of the art QE' besides you don't need an excuse for a teddy I guess. Lol well I don't know, but you're putting ideas in my head now I know it's not a onesie :p
 
Oh dear! I was on pred for 7 years so I know how it feels!!! Hope you get off it soon! And also just read back through the thread as it's my stoma's one year birthday on Sunday and I didn't realise how much girly talk there is in it, so I apologise in advance!!

That's very kind of you :) Pfffttt I'll still wear a bikini! The scar will go down to my knee and so if I was bothered about it, I'd have to wear a wetsuit! I guess we shall have to see! There is a change the leg wound won't heal well either, so not even thinking past that op yet!

Oh, they didn't give me a teddy. I took my own! In fact he was a lion and was the talk of the whole ward! I didn't even get a pillow made from towels and I was at a specialist bowel hospital! lol well I don't wear a bikini to bed if that helps!!
 
It's ok, I don't mind the girl talk. It's just often not as exciting as most men think it'll be. Thanks for the warning after I started reading :p

Well you've nearly single handedly kept me company past few nites. Hate to think what my phone bill would look like if I ended up texting you! So it's the least I can do. Just make sure you send me the pictures, and if its a wet suit job well hopefully you'll be we'll enough to learn to surf! But I'm sure you'll be fine what ever happens.

It would if that's what I was thinking! Ok that sounded a bit wrong! Lol ignore my last comment!
 
Haha opps, sorry!! Completely forgot about the video of my stoma too lol.

Well luckily I have unlimited texts and most of my friends have iPhones so it's free to text them anyway. My poor little sister is living in Rhodes at the moment and was taken into hospital with a sick bug (she's not physically vommited for 13 years and has a phobia of it!) so my phone bill went up from texting her!! Doh. Still, I'm off to see her on sat so had better get that bikini/wetsuit out for packing!! Glad I've kept you company though. The Internet is great for those long, drug hazed, post-op nights!! Providing you're not so drug hazed that you can't concentrate!!

Lol well aren't you a cheeky one! :p
 
Rhodes as in Rhode Island? Long way to be from home when your sick! I hope she feels better soon. In the mean time I hope you enjoy the vacation, sounds like you've earned it. You really have been through the mill haven't you, sounds like you came along brilliantly though.

I'm not that drugged up of a night now, so you have more or less my undivided attention :) Yeah I can be a little cheeky, I try and keep it in check but sometimes I just can't help myself. I'm just glad you're not offended :D
 
Noooo Rhodes as in Rhodes the Greek island! Are you American by any chance? But thanks! First day off work today which is great! But yes, I don't have the best luck medically! Having a load of gum surgery as well at the moment at a dental hospital in London. So got more of that to look forward to when I get home!!

Haha oh it takes a LOT more than that to offend me, believe me lol
 
Lol no, just think beginning to think I've watched too much family guy. Not the gums too, I hope that's not Crohn's related! I'll bear that in mind next time I get an image of you in nightwear ;)

Anyway so do I call you Misty or is it Michelle?
 
I just want to mention that Tramadol can be very bad for your stomach. I am surprised they went with that med as there are alternatives. Just wanted to make you aware:

Gastrointestinal

Gastrointestinal side effects are common. Nausea and constipation occur within the first 90 days of therapy in 40% and 46% of treated patients, respectively. Vomiting, diarrhea, dyspepsia, anorexia, flatulence, abdominal pain, and dry mouth have also been reported.
 
I haven't had any side effects from it yet, but I know it's not a good thing to stay on. Seems like most good pain killers are bad for GI though.
 
Yeah they think it may be Crohn's related. They treat me differently for it anyway!

You may call me Michelle! It gets a bit confusing on here because Terriernut's real name is Misty and we live down the road from one another!! So when people refer to misty I have no idea if they are talking to me or her!!

And I was on tramadol too. Very hard to get constipated when you have an ileostomy and I was on antisickness meds anyway.
 
Yeah I noticed you two had a neighbourly kind of thing going on :) I'm only on tramadol at night now during the day I try not to take any pain killers unless its going to be a long day on my feet. Can't wait to be off the pain meds though.
 
Really? I wanted to take them forever but they made me too drowsy to drive!! Still have a large supply though!
 
That's why I want to stop taking them! I don't want to feel like I want them forever! But I do like my nightly routine of pain meds, hot chocolate, and an hour of how's it made while I do some reading all while tucked up in bed. Oh and occasionally replying to You since you like keeping me up!:p
 
Just got my comfiz waist band today. What a difference it makes to be all sucked in! I can barely stop looking at my new trim looking practically bag free looking waist. Then laugh when I s ee the little bulge that is Junior. I hope he likes his new home lol
 
Well I have considered a modelling career so maybe your wish will come true :p I just found it amazing that even with a bag full of fluid I felt much more free to move
 

Similar threads

V
At the restaurant
Replies
3
Views
2K
t-bone
t-bone
thike1966
Hotel Crohn's Forever, The Return Of The Fistula
Replies
0
Views
564
thike1966
thike1966
thike1966
Christmas Eve, my car was lost, later found
Replies
3
Views
1K
Lisa
Lisa
colin324
Diagnosed with Primary Sclerosing Cholangitis January 2022
Replies
0
Views
5K
colin324
colin324
T
My Story
Replies
0
Views
118
TBG1501
T

Latest posts

Back
Top