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Living with a stoma

Charley

Possible permenant stoma!

So, had my second session of chemo y'day, when the bombshell was dropped that due to the secondary tumour that had been found at the bottom of my rectum, there is a very real possibility that my bag, Margot, will need to stay with me for life. Gutted!

I appreciate that having a life at whatever cost is better than no life at all, but still feel utterly cheated that at just 33yrs old, I may forever have to have a bag. Ahhh well, guess it could be worse. Just have to remain positive that the chemo and radio will do their job, reducing and stabilising the tumours to prevent a permanent ilieostomy and can have the reversal.

Positive thoughts my way please!! Sorry if this is a bit down, just need somewhere to vent!

Thanks,
Cxx

Charley

Thanks for all your comments. Apologies for the delay in responding - had chemo on Thursday which totally wiped me from Fri lunch until about half an hour ago!!

Thanks for your suggestion Stef. It all seems so very confusing and bewildering at the moment. Every day I'm faced with a new challenge to get my head around. I'll definitely enquire about this, thugh obviously am keeping my fingers crossed that this won't happen.

Thanks Alison for your kind words of encouragement. It does seem all a bit daunting. I've only just managed to find a pair of trousers that I can wear, other than leggings!! Maybe it's just me, but as a 5ft size 8, my bag literally takes up most of me and I'm finding it really difficult to find clothes that fit. I can't wear anything hipster and normal waistline also cuts across my stoma which makes it uncomfortable. Am sure in time these things will resolve themselves. Or I shall become resolved to them!

Thanks Hazel - will bear in mind I can vent here!! Good to know there is somewhere where people are/have been going similar feelings. My new kindered spirits!!

I'm going to maintain positive that the chemo and radio will work their magic, get rid of all the cancer and then I can have the reversal and the nightmare will start to turn - about time!!!

Thanks all,
Cxx

suze

hiya Charley -- I cannot imagine what it is like to be a size 8 .... but even so, I think comfy was the order of the day for me when I had a stoma and chemotherapy at the same time, I bought some of those yoga pants that dont have much elastic at the top, just a wide band which can be pulled up quite high onto your waist and dont dig into anything .. not high fashion, but great for comfort ..
wink


have you seen the IA forum? .. that is very good for pointers about things like clothes and other matter related to stomas .. tho only a few of them in there has cancer, they all know about living with stomas

http://www.iasupport.org/forum/default.asp?C=1&title=stoma-support

alisonhelen

Just to make things clear, the irrigation method can only be used if you have a colostomy, not an ileostomy! it's a shame, I would love to be 'bag free' for a few days! Just don't want to build up any hopes people may have!

Alison

simeon

hi charley.
hope you are doing a bit better,

I can understand a little of what you are going through,
I only had a stoma for 1 month before my colon resection and I know its hard,
I thought I would be with one for ever,
I had stage 3 colon cancer, just finished my chemo last month, I'm 39.

there are people here on the forums to talk to when you need them,
I am finding it very difficult to cope with everything but I know how people on here have helped me aswell,


wishing you all the best

Charley

Thanks everyone. I've had a bit of time to get used to the idea of keeping Margot (not sure if I mentioned her name!) and figure it's all part of my recovery, so that's got to be a good thing.

Thanks for the tip off about IA forum - had a look and it was really helpful to know I'm not the only girl going through this and in fact there are others less fortunate than myself, for which I should be thankful.

I guess it was just the shock of yet another thing going wrong (won't bore you, but had a number of cancelled ops, false hopes, stage one, to two, to now three etc). It would just have been nice for something to go according to plan, but I'm quickly realising that's not quite how it works with cancer!!

Anyhow, over chemo 2, got some more samples of bags coming to see if I can go any smaller and going to concentrate on beating the bu**er and reclaiming my life back!

Thanks all,
Cx

Hazel

Hi Charley

I think a lot of us have expereinced the ups and downs of diagnosis.....last year they got me to sign a cure box only to change it to palliative a couple of weeks later, i knew it was pie in the sky but who wouldn't sign! smile mine was doen to a lack of communication but it just highlights the point that we can think we are in one place and then find out we are in another. I think it is how we manage to deal with these changes that determine how we manage in general and it sounds like you are very determined and strong, and if and when you don't feel so much like that we are here to listen and support!

Hazel

Kbar

Hi Charley

I understand how you feel. I'm a similar size to you and do sometimes feel that I'm dominated by my bag. I to hope to have it reversed at some point but I must admit after so much prodding, poking and cutting in the last six months I'm not in a rush to inflict more pain on myself.
Although I cope with the practicalities of dealing with my stoma really well it's the body image part that really freaks me out. I had my operation in September last year but before the surgery no-one thought I had bowel cancer so it was a shock to wake up with my stoma suddenly being there. With clothes on no-one knows but I'm still up front about letting people know just to get the conversation out of the way. However I absolutely cannot look at myself naked in a mirror. I used to love having deep bubble baths but I can't bring myself to have one now. And as for my husband seeing me naked, that is completely out. I know I need to address these feelings but I don't have the courage right now to deal with it. I to need to investigate some different options for things like underwear as I don't want to spend the summer just wearing my comfy yoga trousers and baggy t-shirts. If you find some good solutions could you let me know and vice versa.
Karen

Charley

Hi Karen,

I totally get the bath thing!! After I had kids, I worked really hard to get a decent figure and was sooo chuffed when I got to a size 10. I didn't expect to continue losing weight and then being diagnosed with cancer, no longer being nice and slim, but more scrawny! Although the weight is gradually going back on, my body image is all over the place now. I can't bear the thought of having a bath and seeing Margot bobbing away, which is such a shame. Maybe we should just use loads of bubbles and then we wouldn't be able to see the bags??

And as for the whole intimacy thing with the poor husband, well, no chance! I keep promising him that once my scar stops being so sore, I'll go and buy a nice camisole top to disguise Margot and see where that leads. Not holding out much hope it will happen anytime soon though!

So, clothes wise, I'm now wearing jeggings, which are a bit more flattering than usual leggings. New look have some linen trs in at the mo with elasticated waistband, which look really nice. And I'm going to wear lots of maxi dresses in the summer with Margot tucked into big pants for a smoother line.

I guess, though not ideal, this is our future for the time being. Margot is helping me stay alive and I need to accept and make the best of an unexpected situation. A lovely friend told me last night she couldn't care less if Margot stays or goes, or what I wear. I'm sill here and that's all that matters.

Take care,
Cx

suze

Hiya KarenB, and Charley ..... when you feel like dealing with it there are several threads in the IA site about self-image and in particular a few tips about how to manage intimacy when you have a stoma.

I will find a few of them for you -- they go back over several years so they will not be near the top .. then I will get them on the top again so more people might chip in

All of these links are on the IA site:

relationships - any problems?

a change in attitude

worries about intimacy

do ppl cover their bags?

suze

More intimacy threads on the IA site:

surgery and sex

ladies belly bands

newbie question about intimacy
this one includes info about the coloplast system with the small closed colostomy bags which are perfect for using during sexual intimacy -- I switched to this bag system just for this product on the advice of another IA member, and if the system suits you the bag really is quite small.

alisonhelen

Best advice I can give you for dressing with stoma bags is to when possible, wear 'Sloggi' pants, they hold everything in place and give you a good line under clothes. I know it is best to wear these pants that go higher up than you youngsters like, but are fine under dresses, skirts etc and a lot of trousers jeans etc these days are a lot higher than they used to be! Also you can get 'sloggi' pants in hipster style which may be better for you but make sure they dont cut the bag in half or it will leak! Even though the pants feel a little tight, there is plenty of rooom for expansion! I've worn them for 18 months + and feel very confident in them. Also they prevent you getting a hernia!

Best wishes, Alison

Kbar

Thanks for the advise Alison. Must admit I've never been a thong kind of girl. Much to uncomfortable for my liking. I'm planning a John Lewis trip tonight after I see my onco so I'll have a look out for them.
Thanks, Karen

susie

Just to let you know,

I have been corresponding with Marks and Spencers re an introduction of sexy affordable underwear compatable with a stoma.
I contacted them a while ago just quietly, to try and find out why all the emphasis was on post surgery bras (mastectomy) and nothing for the poor relation bowels.

They said there was no demand, and I explained that was probably because anything to do with below the waist was seen as an embarrassment ,and this was unlikey to change unless a high street retailer embraced the concept.

I asked for them to consider an online facility to begin with, just to test the water.

They are considering.... watch this space!

Suze will tell you I like my underwear...and be blowed if my ileostomy will change that!

suze
janc: Just to let you know,

I have been corresponding with Marks and Spencers re an introduction of sexy affordable underwear compatable with a stoma.
I contacted them a while ago just quietly, to try and find out why all the emphasis was on post surgery bras (mastectomy) and nothing for the poor relation bowels.

They said there was no demand, and I explained that was probably because anything to do with below the waist was seen as an embarrassment ,and this was unlikey to change unless a high street retailer embraced the concept.

I asked for them to consider an online facility to begin with, just to test the water.

They are considering.... watch this space!

Suze will tell you I like my underwear...and be blowed if my ileostomy will change that!

exciting sutff jan ... yes I can confirm I have seen evidence of your penchanct for underwear .. I think ppl should realise you are the patron saint of sexy!

alisonhelen
janc: Just to let you know,

I have been corresponding with Marks and Spencers re an introduction of sexy affordable underwear compatable with a stoma.
I contacted them a while ago just quietly, to try and find out why all the emphasis was on post surgery bras (mastectomy) and nothing for the poor relation bowels.

They said there was no demand, and I explained that was probably because anything to do with below the waist was seen as an embarrassment ,and this was unlikey to change unless a high street retailer embraced the concept.

I asked for them to consider an online facility to begin with, just to test the water.


Best wishes, Alison
They are considering.... watch this space!

Suze will tell you I like my underwear...and be blowed if my ileostomy will change that!

Well done Janc! Excellent idea! if there's anything I can do just ask!

Kbar

Hi Alson

I bought my sloggi pants yesterday. So not feeling sexy but am feeling comfy, safe and secure. They are also more comfortable than wearing the comfizz band I have as they aren't pressing too tightly on my stoma. So thanks for the tip.
Karen

alisonhelen

Glad to have been of help, agree with not feeling sexy, but 90% of the time it's just good to feel safe and secure! Lacy pants for later!

Alison x

susie

Sexy comes later!


Initially your priorities will be to feel safe and secure as Alisonhelen says, and sloggis are perfect for that.

I am well down the road, 9 years infact, and long to be able to buy matching bra and knicker sets on a high street at a reasonable price.

I think it stems from wanting some control of my situation, I couldn't control my cancer, couldn't control my surgery, but I can influence how feminine I want to be,and when.

It's the choice I feel is required, there are specialist companies that do provide, but I want it out there in normal land!

alisonhelen

Janc, totally agree! I am nearly 2years post diagnosis and permanent stoma. I too want it out there in normal land but also in 'outsize' sizes we're badly catered for in that dept anyway let alone stomas!

Again if I can help your cause, willing and able!

Alison

Charley

Alison, I'm really impressed with your pro-activeness with M&S and will email them too to let them know i would like to have some nice fancy underwear too! I'm only 33 for crying out loud and don't think I should feel embarrassed and only able to wear big pants for the rest of my life! cancers taking a fair bit of me, but I won't let it take my dignity!!

Cx