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Author Topic: Possible permenant stoma!  (Read 3283 times)
Charley
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« on: April 27, 2012, 09:27:28 PM »

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
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Hazel
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« Reply #1 on: April 27, 2012, 09:51:20 PM »

Charley i don't have a bag and never did, but i remember being marked up for a stoma just in case and thinking how awful. I can't comment too much but i am sure Alison will be along who has had an ileostomy and is very positive about her experience of having it.....it's a life saver and however awful it seems you can live a very full life with it, but of course it is a daunting thought, i hope you don't have to have one radio can do fantastic things and if you do you sound very strong and will be someone who will have the strength to manage. This by the way is NOT! a vent free zone..... feel free!
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Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
alisonhelen
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« Reply #2 on: April 27, 2012, 10:00:04 PM »

Hi Charley,

Sorry to hear your news, I'm sure that at your age it seems like the end of the world. Your view on this cannot be helped by the fact that you are on chemo at the moment. I am always depressed on the day after seeing my oncologist, as I think I get so worked up about the if's and and's of what may have gone wrong/happened since my last scan, that whatever the news the drop in adrenalin since the last few days puts you on a 'downer'. I have a permanent ileostomy, I'm not going to pretend the pathway has been easy, I had an awful time before finding a bag that suited me, then during chemo I suffered from pancaking and again my bags never seemed secure. Since chemo I have had blockages, but that was a mechanical issue, very rare, my consultant told me and was sorted recently with surgery. But I have never let my bag stop me doing anything, I swim, go on holiday, wear what I want etc etc. I look on it as just another way to go to the loo. I am always prepared with emergency bags, very, very rarely need to use them and always have a change of clothes in the car and have never used them!

My best advice is to make your stoma nurse your 'new best friend' you will need her, so use her! My stoma nurse really is a good friend of mine now and came round for dinner with her husband a few weeks ago! Can't get better than that!

My new stoma works like a dream, I can't believe how easy life is now in fact I ♥ my new stoma!

Keep us updated with your progress and I will help with any stoma issues you have!

Best wishes, Alison
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Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
mum123
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« Reply #3 on: April 28, 2012, 10:01:04 AM »

Hi Charley,  if you want an alternative to your bag  you could discuss the irrigation method with your stoma nurse. I use this method very successfully only having to irrigate every 2 days - wicih gives me 2 days just wearing a stoma cap most of the time . mail me if you want a chat
take care

stef x  Smiley
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Charley
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« Reply #4 on: April 30, 2012, 07:46:29 PM »

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
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You can read about my adventure with bowel cancer on my blog, http://lifeasasemi-colon.blogspot.co.uk/
suze
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« Reply #5 on: April 30, 2012, 08:53:11 PM »

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

« Last Edit: May 04, 2012, 10:19:16 AM by suze » Logged

Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
alisonhelen
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« Reply #6 on: May 01, 2012, 08:04:59 PM »

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
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Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
simeon
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« Reply #7 on: May 02, 2012, 07:08:00 PM »

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
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july 2011, colon collapsed, diagnosed colon cancer.  july 2011  colostomy.
august 2011, colon resection.  september 2011 started chemo (folfox4). 
march 2012 finished chemo.  april 2012, heart broken and recovery ongoing........
Charley
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Me and the babies enjoying spring sunshine


« Reply #8 on: May 02, 2012, 07:46:25 PM »

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
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Make every day count!

You can read about my adventure with bowel cancer on my blog, http://lifeasasemi-colon.blogspot.co.uk/
Hazel
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« Reply #9 on: May 03, 2012, 12:13:28 AM »

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! Smiley 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
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Call the nurses on 08450 719 301
You never know how strong you are until being strong is the only choice you have!
Blogging at http://elkamouri.blogspot.co.uk/
Below is a bit about me and bowel cancer
http://www.beatingbowelcancer.org/forum/index.php/topic,1677.0.html
KarenB
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« Reply #10 on: May 03, 2012, 08:55:28 AM »

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
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Charley
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Me and the babies enjoying spring sunshine


« Reply #11 on: May 03, 2012, 09:52:49 AM »

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
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Make every day count!

You can read about my adventure with bowel cancer on my blog, http://lifeasasemi-colon.blogspot.co.uk/
suze
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« Reply #12 on: May 03, 2012, 10:19:48 AM »

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?

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Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
suze
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« Reply #13 on: May 03, 2012, 10:44:03 AM »

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.  
« Last Edit: May 03, 2012, 10:51:01 AM by suze » Logged

Sept 2006 Dx. Chemo-rad. to down-size. Jan '07, surgery and ileostomy. March '07-Oct07, 12 cycles of chemo. Jun 08, Ileo reversed.  Oct 09, fresh mets: bowel and lungs. 2nd bowel op. Dec 09-May10, more chemo. 18 months off! Dec 2011, lung mets grew - Jan 2012, lung surgery.
Dec '13 hernia repair
alisonhelen
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« Reply #14 on: May 03, 2012, 11:58:12 AM »

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
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Come with me on a journey, no map, destination unknown and I'll travel your path with you. We'll hold each other up when the road gets steep, we'll laugh and cry along the way, because I feel your pain and you feel mine.
Feel free to read my blog:-'Why not me?' http://alisonhelen.blogspot.co.uk/
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