Intimacy with a Stoma

[kiwij64]

Has anyone out there suffered the same problem? How do those of you who have a bag deal with this issue? I would love to hear from you and see if I'm normal in feeling the way I do (embarrassed, anxious, ridiculous etc)

If anyone can help I would appreciate it :confused2:

 

[PsychoJane]

Hi Kiwi,
It's normal I think to feel that way, especially if you have not had your bag for a long time. I got mine at 14 years old so let's call this my pretty much whole life. I was overly stressed by the idea of getting intimate. It was to the point I would pretty much push the guys away when I was a teen as I was afraid of dealing with this. It got better with time, I've started gaining confidence by experimenting... It's annoying to say, but I had to learn the hard way. I have not always felt confident about it and even now I would not be perfectly fine with the idea of announcing it to a new partner (been with the same for a while now) but still, it is definitively less anxiogenic than it used to be for me. Sometimes it is just about facing it...

In order to make things better, I would find ways to improve the way I looked (using bandanas to keep the bag subtle and make sure it would hug me perfectly). Once I was personally satisfied with all that I was able to feel right and expose myself to other. We are often the meanest judge to ourselves... I find that I don't need to dress up when the persons have known me for long enough. Most of the time, my partner did not care about my bag much, I was the one caring about it... I believe that if you feel ok with your bag, feeling embarrassed/anxious/ridiculous should fade progressively.

Therefore, you need to find a way where you feel comfortable with your bag. This can be with clothing tricks, buying smaller bags(that makes a huge difference if your bag is smaller), putting it sideway with a bandana or a tight tube. The key is to keep it in place so you don't have to care and worry about it. As time goes, I don't care anymore, but it helped me a whole lot to be able to just know it was there and not in the way.

I don't know if I am helping in any ways, I hope I do... if you feel like you can word in which way you feel embarrassed or ridiculous about your bag, feel free to word it out. Maybe we will be able to bring more specific support or tricks to help you feel good relatively to your intimacy.

 

[kiwij64]

Hi :biggrin:

Thank you so much for your advice. I want to explore the smaller bag option but I'm not sure if we are funded for them in NZ however I will discuss with my stoma nurses and see what can be done. Also your idea of bandanas and tubes etc are such practical and great ideas. I guess it's not until you talk to someone in a similar situation that you learn the most

I am so sorry that you have had to go through what you have had to and I know what you're saying is true - that we are our worst critics, which I am and I know I am. I think I will adopt some of the things that you have talked about as these long bags are revolting the way that the opening at the end of them feels like it's halfway down your leg.

Stupid thing is my hubby doesn't really care, all he cares about is that I'm still here and didn't die on the table so you have really put it into perspective for me.

Thanks once again
Kiwij

 

[Naturelover]

kiwij64,

I don't have a bag, but I do have an implanted port with a catheter extension that hangs down past my crotch area. During the day, I stuff it into my bra. Imagine my embarrassment when it is suddenly hanging down past my shirt in public. Ha, ha!

Having had a son with a G-tube, I had already learned to accept my implanted port with it's accessories as part of my body because that was what I had taught my son. (I had a PICC line first. What a joy that was. Sarcasm of course.) Since we usually get intimate at night and that is when I have to be hooked up to my IV, my hubby and I quickly learned how to maneuver carefully so as not to hurt me and still enjoy one another physically. Talk about getting creative! I was the one who had to initiate this. My husband looked like a lost puppy. He was so afraid of hurting me. He admitted that he didn't know if we could get intimate with the port accessories adorning my body. That didn't last long. He has learned to accept the port, it's accessories and an IV running the whole time we are having intimacy.

psychojane is right. It's all about perspective and figuring out how to make it safe as well pleasing to the eye. Mainly your eye. Men really don't care as long as they can have that intimacy. God created men that way. Thank goodness for us! It's more of an issue with us. Again, perspective.

So are things improving now since you last spoke with psychocjane? Have the nurses been helpful to you? Can you get the smaller bags? Even if you only use the smaller bags during intimacy with hubby it's worth it. If your insurance doesn't cover the smaller bags, can you still purchase them on your own? I purchase some of my medical equipment because my home infusion company doesn't carry some of it and the equipment is more of a personal preference for me. For me, it's worth the out of pocket expense.

Blessings,
Naturelover

 

[kiwij64]

Hi Naturelover, thanks so much for your post and advice. You're right, it is in our heads and it's our perceptions, guys are made different.

Not really any improvement at all as such. I tried one set of smaller bags and they leaked so that was no good, I am going to try the two piece soon, just recovering from the flu at the moment and don't feel up to trying to work out how new bags work at the mo. I have issues with lots of air in my bag due to my chest capacity and restriction because of my arthritis so I've asked the nurses if I can have more than my allocation of two bags per week. They have to talk to their managers so I'll just have to wait and see as my private health insurers don't cover or subsidise bags and since I had to give up my career last year, I don't think we have the funds to be able to supplement as the cost of the bags here are quite high. Because I'm riddled with arthritis also, I am on a three month course of physio and am waiting for an MRI. If the results are positive then I will be put on Humira (Remicade) but that's at least three months away because of the physio timeframe so I have to literally hobble on till then. My hubby is totally supportive and understanding and is just taking all of this in his stride even though it is so hard on him to watch me go through this. Despite all of that, I'm sure that we'll be able to have a proper relationship at some stage of the game when things have settled down, and just to reinforce what he has said to me has been worth its weight in gold so thanks for that!
Kiwij

 

[annawato]

Oh Kiwi, I am amazed they only allow you 2 bags a week! It sounds ridiculous when Its so easy to lose one due to leakage or any of a million ways. I'd definitely be talking to my stoma nurse about that. So unfair to make you have to worry about whether you have enough bags on top of everything else.
everyone else seems to have answered the intimacy question pretty well. Your feelings are exactly how I felt and I think my husband was not at all worried so it was all my head. Covering the appliance with a waistband or similar sounds like a great idea - at least then you cant see it and its held up out of the way.

 

[kiwij64]

Hi Annawato, welcome to my life lol actually they won't let me get caught short and I am still in the process of trialling to be fair, but it's just so bloody frustrating and I just want some open and transparent answers so I know what i have to work with. I think my main concern is the air entrapment in my bag from the arthritis so that's the biggest hurdle right now. I want to be able to just know that I'm going to be able to go out and do the normal things in life without panicking hysterically about air in my bag and it blowing up like a football. I think I'm just in a bit of a fug, having the flu and all has really knocked me back and has left me totally housebound so I'm trying to re-think everything I've learnt and try again to get up of the ground and get on with it again. It's just so hard, really hard and I'm trying not to cry every two minutes which is so not me.

Anyway, I'll be ok, just need to get over this and try and just get on with the business of trialling and finding a bag that's going to be ok and I thought maybe getting some nice pouch covers might help? Just need to find a supplier close to home. Do u wear any? And if so, any advice who I could have a look at?

Thanks
Kiwij

 

[annawato]

I actually had my stoma reversed feb/mar 2011 but am still happy to answers any questions i can help with. How long have you had yours? Is it permanent or temporary? Everything you are feeling is quite normal I think. Getting a stoma is a HUGE thing in itself and then dealing with all the little(or big) problems it throws up just adds to it. I had air entrapment problems too, are you using a bag with a filter to allow excess air out? They don't always work and sometimes leak a very small amount of fluid but I'm sure they are better than ones that dont have filters. The thing I found most helpful was to ring around all the suppliers of stoma products, tell them what problems I was having and then they sent out loads of samples so I could find the right product for me. I'm Kiwi suppliers will do it same as the aussie and I found the people on the phone very sympathetic and helpful. I had a hugely overactive stoma - 2-3 litres of liquid of day so I was forever emptying it - twice during the night every night was the worst. Because of all the liquid it was prone to leaking too - I was once trying on some clothes in a shop only to have the damn thing drizzling everything everywhere. Needless to say it was an expensive outing getting stuff which didn't even fit!!!! But they are the horror stories. Its amazing how quickly we do adapt to this new part of our lives, getting into a routine to easily change the bag and knowing when to empty etc etc.
I'm not sure about pouch covers but I found wearing big granny underpants or a "waistband" ,both of which I got from one of the suppliers, was an enormous help - it just makes everything feel more secure having it held close against your body and partially supported by the material. I cant remember which and I am in hospital at the moment so cant check but as soon as i'm out I'll find out. Dont hesitate to remind me if I forget. And if you have any other questions or need to cry it all out you're more than welcome to contact me either thru the board or private message me. I really hope you get over the flu soon too cos you're right, it makes it so much harder to deal with everything else. Having a good cry is good because the whole situation is horrible and it is a damn nuisance and all of that, but know that you WILL get on top oof it and find it easier to deal with all the time. Things will definitely improve.

 

[kiwij64]

O you poor thing being in hospital. Is everything ok? Well stupid question really but I hope whatever it is that it is rectified quickly for you. I had emergency surgery in April of this year, was going to be just a simple loop ileostomy but it turned into a total colectomy because my bowel blew up to 8cm and was the consistency of tissue paper. Anyway, despite all that I got through it all, as you do. I have a two piece system to try and also the Coloplast Sensura small bags to try so once I feel a little bit more human, I will try them and see if they work as well as the big Hollister ones I'm wearing now. They all have filters but none of them seems to work with the air issue, but then again it's my chest that's so constricted having bad arthritis so I don't really think it's going to be an issue that's resolved soon.

I've bought some big granny underwear and yes, it does make me feel better and better supported, nothing that I would want to flaunt round but you know what i mean! Thanks for what you said, it means a lot. I guess it's too easy to get yourself down about everything, I had to quit a job that I loved with a less than supportive boss but regardless it was a career that I loved and now after 30 years of working and bringing up kids, I'm at home and have no idea what to do with myself! My only appointments are hospital ones as I have so many to do with my arthritis etc., so I suppose it's just early days yet and shouldn't beat myself up too much.

Hope you are doing ok though, let me know how you are doing as I know what it's like to spend endless days in hospital. Take care xxxxx

Kiwij

 

[annawato]

Thansk kiwij, my (latest) story is under back in hospital - end of the line so I'll let you read it all there if you'r e interested. basically things not looking too good at the moment. was hoping to get out tomorrow Friday but my white cels have gone up so expect they eill keep me longer. Plus I'm still on tpn although eating as well. its my twins 21st birthdya party Saturday week so I'm hoping i''l be home by then or that at least I can get a pass out for the evening.
Such a shame about your job. It will take awhile to get used to not working - time for some new hobbies i guess. Some well meaning girlfriends brought me in some patchwork quilting to do - sshh not really my thing - or not the style they chose me anyway and a bit fiddly in the hospital bed but i appreciated the though and am now just stressing to get some done so they dont feel bad haha.
and yes, dont beat yourself up too much - in those early days life seems to revolve around "being sick" until that is how you define yourself, but with time the real you will start to emerge again. Keep in touch.

 

[kiwij64]

Hi, I will read your post, of course I'm interested, you've been such a help to me! O god, I hope you do get out for your birthday party, sounds like it will be a good night for you and your family. Boys or girls or both?

I am looking at ways to reinvent myself, taking up hobbies etc., although I am laughing at the patchwork quilting, but what a lovely thought from some well meaning friends. it's always the little things that make you feel good isn't it? I've got a couple of older girlfriends who come and go and brighten up the day, but mainly I am on my own with the puppy so I've got to start thinking of things to do. Off to my first physio appointment shortly so I'm looking forward to starting something physical that will hopefully move myself forward. And yes, it is early days, once i get this nailed, I think I will be ok! Take care and I'll read your post.

 

[annawato]

One boy, one girl, so we were very lucky with them. We had a baby beforehand that died from congenital heart problems 12 hours after birth, then i was unable to fall pregnant again so we went on the gift programme which is like ivf except fertilisiation happens naturally in the body. i think it was probably crohn's that was making me infertile because the first time it took about 5 days to fall! anyway I had always wanted twins - though not sure if i'd wish them on anyone else- so alls well that ends well.
As for the party, they will definitely let me out for the night at least, though being on flagyl I wont be able to enjoy a drink. Bugger!
Having a puppy must really help you, I have a 3 year old maltese shitzu who I adore. I've always had big dogs in the past - shepherds, labs etc and hated "little white yappy things" but this one won me over. What sort of dog is yours? name? Rank, serial number? haha.

 

[kiwij64]

God, you're a trooper aren't you?! Wow, twins, handful when they were young I bet. I have a daughter who is 19 next month and a son, 15, both at home with me and hubby and great kids, although they also had their moments when young!

Have a little spoodle, well we thought she was little but she has hind legs on her like a kangaroo, should have called her Skippy the way she has learned to jump, but her name is Bella! We are hoping that she will be a medium dog, I was hoping for smaller but she's so cute it really doesn't matter anymore. She's apricot and cream, a bit fluffy at times, a little bit yappy when she wants the last word, but altogether fantastic company. I lost my miniature schnauzer earlier this year as he developed pancreatitis, he was 11 and I adored him to bits so I took it really hard as I was sick at the time and going downhill. However, Bella is great company, well sort of like looking after a two year old really and whilst it's hard I don't think I would like the house without a dog now.

Pleased you will be allowed out but buggar about the drinking. I used to love having a few wines at night, but my consumption is buggar all now, I'm really a huge pathetic failure in that department ha ha but I'm hoping that I'll be able to really enjoy it one day without worrying about my bag blowing up like a balloon!!!!

 

[annawato]

Theres an interesting thread somewhere on this site about what people can and can't drink with their bags to prevent them blowing up- may be worth you looking up though I think we all tend to drink less now with all the meds than we used to. Although I've never been told by any doctor not to drink with crohn's - just got out of the habit as my husband rarely drinks. Now I always enjoy a red when dad comes over for Sunday dinner (partly to stop him drinking the whole damn bottle himself and partly cos I enjoy it haha)
Spoodles are gorgeous, another mix that takes the best from each breed. Hopefully she wont be an escape artist as well as a jumper - one dog we had we had to increase the fence height to 8 feet - where council would let us - just to keep her in. I'm sorry to hear about your last dog - they do become so much a part of the family and particularly if you are home alone during the day a huge companion. so when they go it does leave a large gap and naturally we grieve them. Having Bella will definitely help though.

 

[kiwij64]

O god for sure they become part of our families so fast. We have Jack's ashes with us in the lounge in a gorgeous wee box with a plaque. I tell people he's no bother these days, just have to give him a little dust off now and then, and then I tell Bella that she's being watched ha ha, total nuts but then again if you don't laugh you go crazy right?

Yeah it's funny with the drinking thing. I still do enjoy it but it doesn't seem to like me so in the end I just pick my moments like you! All our dads must be the same, mine loves red wine too and so does hubby, must be a male thing!!! So how are you feeling today? I've heard about your bug, hope that washes over you as quickly as it can, always seems to be one thing or another, never as seemlessly as we want it to be. How's the quilting going? I keep on thinking of you stressing out to get a bit done, at least you have an excuse of really not feeling well, maybe that might do it!!!!

I had a bit of a moment this morning as I'm trialing a two piece bag for the first time. I have it on but god was I scared to put it on, really ridiculous feeling. I am still trialling bags and my 'comfort' one is the Hollister big long one but I hate the length and Coloplast seem to aggravate my skin with the plastic flange and have leaked so I'm trying a Hollister two piece, although I'm freaking out that it might leak so this will be fun....not!

As I said, there's always something. Never seems to have been a smooth road since this all happened but I did get to physio and have got some exercises so at least that's one positive. Now I just have to do them....eek! Should be a laugh.

Anyway, hope you are doing ok. I'm thinking of you and I'm sure you'll get through this. Anything for a party right?! Lol

 

[annawato]

Absolutely you have to laugh. I have a picture in my head of Bella eyeing off the mantlepiece every time she does something naughty.:ysmile:
The quilting is absolutely not going - so yes I may have to exaggerate how ill I've been. Oh me oh my couldn't even lift my head from the pillow haha
I wish I was home so I could tell you which products I found good, although It is and individual thing, but I remember not having any luck with the two piece - was always afraid it wasn't securely on, but i guess it saves the skin from so many changes so if it works excellent. the bag I found best was a long one too - but the end used to irritate the skin on my leg so thats where I found wearing a waistband helpful as it would hold it up and away from my skin.
I feel like I've improved today - fingers crossed.
Enjoy those exercises - fun fun fun. But worth it.

 

[kiwij64]

O forget the quilting, you're not in an old people's home yet ha ha, Crohns can always affect the ability of the hand to pick up small objects like needles he he he you could always try that one.

Survived the night with the two piece but still had to get up twice to expel air and with a smaller bag, the neeed was greater so Im no further ahead really but I'll persevere and see what happens. How does your hubby cope with all of this, considering they are just men lol???
Pleased to hear that you've turned a corner, downhill slide to the party now!!!!

 

[annawato]

That was what i found worst - having to get up at night to empty or expel air so the bag didn't go flying off in bed. Can you attach a bigger bag just for use at night?
My husband copes pretty well though misses me when i;m in hopsital plus its an extra hassle visiting etc. He tends to worry about the little things in life not big things so hep c0pes with this very well. haha
yep, I;m certain one of the medicines is affecting my eyesight and ability to do quilting.
Good news though - i am going home tomorrow. Yippee. Convinced my gastro i could survive at home if they can give me all oral meds and he agreed it would be better than staying here and picking up YET another bug. Just got to stay well til after the party then they can do what they like.

 

[kiwij64]

Yahoo, that's so cool to hear!!! I'm so pleased for you and yes, you'll be far better off at home, makes sense really.

I'm only allowed two bags per week so that's going to be my next mission with my stoma nurses, asking them if there are a variety of bags that I can have with a two piece should I decide to have it. I'm sure they're trying to keep me on the one long bag so that I don't find out how great the two pieces are and as sure as eggs they're trying to keep all this as a cover up, shutup and don't buck the system ha ha but i do. It should be a fundamental right to have different bags for different things that you do in life. Anyway, going to annoy them even more so that should be fun....not!

Good that you have a supportive hubby. My hubby is a bit like that too, just gets on with things, can't really do much else can they, but i do feel sorry for him not nice to have to cope with things all the time.

yay, let me know when you break out...!

 

[Hobbes650]

Has anyone out there suffered the same problem? How do those of you who have a bag deal with this issue? I would love to hear from you and see if I'm normal in feeling the way I do (embarrassed, anxious, ridiculous etc)

If anyone can help I would appreciate it :confused2:

I had a permanent ilieostomy performed in my early 20s, and am in my mid 40s now. Intimacy was wierd at first, but my routine seems to work fine. I am currently engaged to my girlfriend of over 6 years. It's never been a problem for her (nor others I have dated). I only use non transparent one piece pouches, preferably tan colored.

Here is my routine. First I completely empty the pouch, clean the inside well and then close the end, making sure as little gas as possible is left inside the bag. Then I simply fold the pouch over itself in order to make it as small as possible, and apply 2 inch paper tape (I prefer tan colored tape) all the way around the edges. When I finish, the bag no longer looks like a bag, but rather a large square bandage. I also put a piece of 2 inch tape across the middle of the folded pouch to help keep it flat. The bag may start to fill up, but really not that much and I've never had to worry about any leaking. Usually, the first time my girlfriends ever saw my bag was in this form and it was much less intimidating for them. Immediately afterwards, I undo the tape and let the bag hang down as it should. I'm not much of a swimmer, but I when I do sit in the hot tub I tape up the bag in similar fashion.

At first intimacy is scary, but you have to fake it. That is, pretend like you've done this a million times and reassure anyone who seems nervous, that this will not get in the way. It really doesn't and your partner will learn that the first time. Now, some people will have issues and that's their problem- don't waste your time with these people. Better to see that part of their character early!

Hobbes

 

[kiwij64]

Hi Hobbes, great to meet you. What a great idea! It's actually just in my head, my hubby of over 20+ years cares not a hoot, he's just pleased that i didn't die mid surgery as they all thought I would! It's funny what goes on in your head during this transition.

I'm currently trialling bags, trying a two piece system at the moment although I have to make a decision soon as my stoma nurses have advised that in NZ we are only funded for 2-3 bags per week max.

Thanks for the tip though, especially for spa pools and such. Had never thought of it before, well to be honest, I've never had to think about any of this as it's all so new. But thanks once again!

Kiwij

 

[annawato]

i just cant get over this two bag thingy. i often used more than one just changing when the stoma decided to get active right at the worst time.Or when one would fail for no reason - I mean its not like you can use something else to tide you over. Or when i developed excruciating pain due to liquid poo seeping out onto the raw skin around the stoma. I remember sitting there in tears and agony using an old nappy to mop up everything but in too much pain to stick another bag on. I'd get up the guts to put another one on and half an hour later have to remove it cos of the pain.Like everything it eventually healed just another joy in a crohnies life. What you have to do is call every company that supplies bags and get them to send you samples so at least you have some spares. I have lots of them at home so any that have been uncut I can send over to you if you like. Anyway let me know. You can private message me if you like.
Hobbes post was very nice and helpful. i think he dealt with it all in a very dignified way.
Glad your hubby is so understanding, its hard for them having to put up with sick wives but far better sick than dead. At least they get dinner cooked for them sometimes.:kiss:

 

[Hobbes650]

I have tried many kinds of bags over the years and thought I'd share some things I learned. The Nurse is a good place to start, but I find that many of the ostomy supply manufacturers have "specialists" you can talk to. These people were by far the most helpful to me. Initially for many years, I would only get a few days of wear time (one piece pouces) but now after talking with these specialists, I routinely get 5-7 days. Many of you may find this information old news, but I hope it helps some of the newer ones.

For new stomas, they will shrink so you always have to use a cut-to-fit kind of pouch. Two piece pouches are larger than one piece, wear time can be longer, and they are easier to clean. But they have a larger profile, meaning they are more noticeable under clothing. I prefer the one piece due to their low profile.

Once the stoma has shrunk to it's new size, you can buy pre cut bags. BUT, you need to figure out if your bag should have a "convex" of "flat" wafer (the part that sticks to the skin). Convex wafers are meant for stomas that are short, and if you use a pouch with a flat wafer over a short stoma, the bag will leak out underneath. I cannot remember how tall the stoma has to be, but any product specialist will know this. Took me years before I realized I needed a convex wafer and by using those now, my bags are much more secure.

The other most important thing to increase wear time is protecting the skin around the stoma. When it's all red and angry looking, there are some special creams and things that help. I find the best way to protect my skin is by using a large skin barrier over the stoma and underneath my bag. Eakin and Coloplast make large barriers I like. Since I use the barriers, I do not have a need to use any kind of paste on the pouch- I simply place the pouch over the stoma and onto the barrier. This combination works great for me- I can often get 7 days of wear time before putting a new bag on.

 

[kiwij64]

Hi Annawato, yes it's hard to get my head around it too! I think it's barbaric. She (the nurse) changed her tune though when she rang me a week or so ago and I was crying and said that I could wear 2-3 pouches per week. Told her if I knew I could have had three I would have been doing that every week! I'm getting so frustrated by their ability to keep me in the dark, and the local lady who runs the Ostomy Society was less than helpful also, telling me that I needed to go talk to the nurses and was terribly diplomatic and then when I asked her if anyone locally made pouch covers, you guessed it, she gave me instructions on how to make one!!! Geesh, talk about banging your head against a brick wall. If I was a conspiracy theorist, I would think there was some kind of skullduggery going on, but I really think it's the 'putup and shutup' mentality that these nurses have devised here and none of them have stomas. Typical. I do cook dinner every night unless I'm laid up with the flu, one of the things that i can do around the house!!!

Hobbes, thanks for your post. I think I might ring up some suppliers although for me the two piece seems to be going well, day 3 with no problems as of yet, although i did get excess air in my bag again last night and was up a couple of times expelling it. I can use the one piece and two pieces with convexity, the non-convex ones leak on me as I think my stoma is really small - only 30cm and it's not very high. I use the paste but no barriers yet as my skin seems fine, however I'm only new to this so will bear this in mind.

 

[annawato]

Thanks for your post Hobbes - I think its good to routinely share info becasue there are always newbies struggling and eager to learn all they can. I remember when I first got mine (since reversed) I couldn't get my hands on enough material to read about it all. Its amazing too who some simple idea can slip by for instance you with the convex/flat bags. The more knowledge out there the better.

 

[annawato]

Kiwi is there anyone else you can call? Ie someone not local? It just does not compute that they would limit the amount used. i Understand they don't want to encourage waste but seriously 3? Its not as if theres a black market in stoma bags in New Zealand. Is there? or is there something about kiwis i don't know. haha.

 

[annawato]

perhaps theres another use for the bags. hmm, cant think what right now.

 

[kiwij64]

Black Market???!!!! LOL. So funny, sitting here cracking up and no, there is no one not local I can call, but I did talk to my fav stoma nurse today and he's really on my side and I've told him that my problem is not going away or will ever so it will be interesting to see what he says. It is a bloody farce and unfair, and I've told him all that and I happened to mention that it shouldn't be about the money and funding blah blah blah so I had a good old winge but I doubt it will change anything. Anyway, miracles have happened so I'll just see and bide my time.

Yes, the information that you and Hobbes are providing is just so awesome. Seriously it is a major turnaround from how I was feeling just a couple of days ago. I had a meltdown for the first time since I started getting sick (this time last year) and once I started I couldn't stop and I couldn't see the light at the end of the tunnel, but with all the conversations that I've been having with people like me it has really changed my outlook and literally saved my life so thanks :smile:

 

[Hobbes650]

Kiwi, glad to hear you are in better spirits. I can only imagine how it must be to live someplace that tries to micro manage your healthcare this way (although, we are certainly moving in that direction now faster than ever!). Next time somebody tells you you're only "allowed" so many bags per week, ask them how many times a day you are allowed to empty it.

 

[annawato]

good point from Hobbes! how often can you empty it, how often can you let air out of it what do they suggest if you run out of bags.
But most seriously I am so glad you are feeling in better spirits - makes everything easier to handle, and we are always here to make you laugh, or have a cry with you or whatever you need. And sometime a meltdown is exactly what the body needs too.
Stay positive and happy and motivated and all that ..........stuff and also let your self feel sorry for ourself just once in a while cos thats allowed too.

 

[maria]

For me it was finding things like crotchless panties or body suits.. I wore tight shirts to hold bag in place..I was scared to move because the crinkling of the bag. So in my mind I feel boring. I still feel weird about it.

 

[Misty-Eyed]

I just usually make sure to leave my waistband on. It's only really the noise of the bag that puts me off.. but I've not allowed to get 'intimate' since my op anyway which was 11 months ago Think by the time I'm allowed to, I just wont care lol. I'll be too happy!

 

[kiwij64]

Hi Misty eyed and Maria, I know how the pair of you feel. If it's any consolation too Maria, I feel so boring too, bad enough being relegated to staying at home all the time without feeling that, but hopefully things will pass as it's only been since April that my world turned upside down. Are there any people your own age at any Ostomy groups? I haven't met anyone either apart from online here and on a couple of other sites on Facebook so I know what you mean.

Misty, how are you coping? When you say 'waistband' do you mean that you wear a two piece system? I am trialling one for the first time and I have to say if I have to get excited about stuff like this, then I'm excited as I really like it! I never thought in my life I would utter words like this but hey, you never know what life throws at you. Where abouts in the UK are you? I'm in NZ but was born in Newcastle. Went back last year after 21 years away and am homesick ha ha!

So lovely to meet you both xxx

 

[kiwij64]

Thanks to the pair of you, god, I'm sitting here crying as the generosity is so overwhelming. It is a roller coaster ride, never static in my case as I guess it is with the pair of you too.

I loved your comment re emptying the bag and yes Hobbes, it does feel like I'm being micro managed and I hate being told what I can and cannot do, especially when I fundamentally believe that the system is unfair to begin with.

I spoke to my lovely stoma nurse yesterday and he was very reassuring but he's only learning and he has to toe the line as well so it's hard on him too. The 'dominant' stoma nurse is the one that has taken over as she is supposed to know everything about everything, except the fact that she doesn't have a stoma!!!! Anyway, I think I might give Hollister a ring today and see if they'll let me order a few samples, will be a good test to see if they will let me circumvent my stoma nurse. Wish me luck on that one!!!!

They've said they would never let me run short, but then on the other hand they apply pressure for me to pick a bag, it's just like banging your head against a brick wall!!!!

So, how did the pair of you cope with your roller coaster ride?

Anna, how are you feeling today? Are you home? How are the party preparations going? I'm so excited for you this weekend.

I've overdone myself the past few days so today I'm crawling about like an old granny :rof: but as my hubby says 'everyday above ground has got to be a good day!' - god love him!!!