Total PE and possible tummy tuck at the same time

Hi Leanne

I’ve just been reading the other posts and wanted to tell you a couple of things about my situation. My two stomas are in a line-one on either side of my belly button. Neither of them protrude from my body at all. My colostomy is completely flat with my body and a circular shape. My urostomy is an “innie”, in other words it is recessed, and it is crescent shaped. So we are all different!

As for belts, I don’t wear any kind of belt and don’t feel I need to. I wear normal underwear-again I don’t see the need to get specialist stoma underwear. I wear normal knickers (Matalan’s best!) which are full briefs so they cover both bags and are very comfortable. I find there is enough support with them and I like things to be comfy.

Everyone’s opinion on which is easier to manage will likely be different, but for me my colostomy is the easiest. I have to use more products with my urostomy so it takes a little bit longer to change that bag, but not much longer. I use a flat bag for my colostomy and a convex bag for my urostomy. I went through trying many different types of nags before settling on what was best for me, 

It’s really impossible to know how things will turn out until after surgery or what will be best for you. I’ve never seen pictures of stomas which look anything like mine for example! And it’s difficult to know in advance what will work for you-don’t assume in advance you will need special underwear and two belts-personally I cannot imagine how awkward I would find that, but others like those things and that’s ok. 

And also, it’s useful to remember that the surgeons and nurses know the theory of what works and all the technical stuff, but I’ve never met any surgeon or nurse who actually knows in real life what it’s like to live with any kind of stoma. Much of life with a stoma of any kind is trial and error and learning how to do things which work for you personally and we are all so different. 

I find I actually don’t miss my bladder more-I love the fact that I don’t have to get up in the night for a wee-especially in winter! 

Sarah xx

It's more that they each have their own personalities. I had more trouble with the colostomy in the beginning but once I mastered getting the bags securely attached, I'd say the urostomy is more trouble. But only because it needs emptying so frequently when the colostomy only needs to be dealt with about 2x per day. 

But I get why you are more worried about the colostomy. I was too. 

I know what you mean sbout not missing my bladder - the night bag is fantastic - a good sleep after years of interruptions to use the lavatory (& that's before bladder cancer). And standing up to urinate is easy too. Not having the urge to go is weird at first and led to leaks because the bag got too full - it's heavy then but when sitting you can miss it and it can pull away.

The bag adhesive works on body heat so you need to hold it against you. Nurses hands all seem to be warm and they hardly hold it at all. Mine are cold so it used not to stick well. I learnt to put the new bag in my bra (especially in winter) while I got everything ready to do the change and now I hold it in place against me when finished changing for a couple of minutes - I do a mindful breathing thing on my Fitbit - and that works much better). In summer heat sweat can mean the adhesive breaks down sooner but again keep emptying it - I've gone back to setting a timer on my phone this year.

On underwear, at first  my diluaghter bout me lots of very expensive pants from specialist suppliers which helped because I needed to keep my (much diminished after chemo but still flabby) stomach firmly in place. But the new M&S stoma pants are even better and much cheaper as well as colourful: I paid £18 for 3, as post op underwear (as opposed to £30+ for 3) and they have a wide, flat waistline that helps put less pressure on the stoma. Men often stop using belts to keep up their trousers and use braces for that reason too. My pre-op pants were too big after chemo to give me any security especially at the start.

I wish I'd known all this sooner as at the start I found it a bit scary - I sound confident but it was all so new and after a big operation it seemed hard. 

Trial and error got me to a good relationship with my stoma and after 2 years I rarely give it a thought. I hope it all goes well for you this January.

All the best,

Latestart

I've taken a few days to digest what you've very kindly shared. I hadn't appreciated that the 2 stomas may be placed in line. Also not appreciated that the stomas may be different in how pronounced they are or their shape. Your comment has been so helpful because I'm helped me to stop overthinking. I'm just going to take each step at a time and deal with what I have to, when it happens. Thank you so much xx

Susan, wow I hadn't once thought of the differences in each stoma. And your insights have been invaluable. There is so much talk about outputs from colostomy stomas that I just assumed that poo = trouble. Thank you x

Hi Leanne

It just shows how individual we are! I have a friend in the USA who has both of her stomas on the same side, positioned one above the other which I’d never heard of before! 

Every single person is unique. I was shown some pictures by my stoma nurse before my surgery, and neither of my stomas looks like what I was shown. It depends on a lot of things like your body shape and where your folds and creases are, and how the surgery is done. 

If I’d done a lot of searching on Google in advance (which I chose not to do) I might have had certain expectations of how mine would have turned out. As it was, I just accepted them both and think they look very neat-I’m perfectly happy with them both, and how they turned out.

Sarah xx

Thank you for all the wonderful tips on things you found helpful. I'm wondering about underwear and clothes, what I'll be able to wear after the op. I work in an office so wear trouser suits and am worried that I won't be able to afterwards . 

Wow I didn't know that you could have both on 1 side! Like you, I've made a conscious choice not to google stomas apart from Mcmillan, Cancer Research and Coloplast sites. I'll just deal with what I have, when I have it. One thing I've learned from the process I've been through so far of hysterectomy, radiotherapy and chemotherapy, is that it never goes how you think it's going to. 

I'm currently sat in a waiting room on a ward, no beds available, for a GUA to see what type of pelvic exenteration I'm having.

All the best xx

I’ve never heard of anyone else except this one person having them both on one side and it makes it very difficult to manage so I’ve no idea why it was done like that. Very difficult to get the bags positioned correctly and to fit well. But that’s the USA and not here! 

I hope everything goes smoothly for you today-always a worry about there not being a bed. I’ve just remembered it was exactly 5 years ago today I was sitting waiting to go to theatre for my salvage hysterectomy which didn’t even proceed after they’d opened me up! I wish I’d gone straight to the TPE. 

At least your exam under ga shouldn’t take too long today-so all the best with it and let us know how you get on. 

Sarah xx

Of course you will! Wear whatever is comfortable. I have only 1 stoma of course but as I said to my stoma nurse yesterday (had my yearly check up) nobody ever knows I have a stoma and a bag on. I have only ever worn trousers since the op (and for 20 years beforehand) but I could wear a skirt if I wanted to or a nightie (pyjamas always for me).

You need to try things out after the op. And where these bags sit will be a factor re waistlines of course. But they usually take that into consideration before the op. The stoma nurse at my hospital came and marked the spot. Tell her you wear trousers and can they consider that.

You'll need new clothes anyway after a tummy tuck, won't you? Start a bit loose though as you'll be a bit bigger than your final size just after the op. So, I was a size 12-14 beforehand and got stoma pants size 16-18 for my first lot - you'll need at least a pair a day and probably more as things settle down as you may leak a bit - no big deal, just getting used to things.

After a few months I went back to 14 - just to leave room for 'output' (you may not be able to empty the urostomy at once and a bag of urine can take up space under clothes. And nobody ever notices that by the way.) Plus, peeing standing up is easier in trousers.

I still have some very expensive pants I got from specialist suppliers -  google stoma pants or your hospital stoma nurses will probably give you a list. But now I swear by Marks and Spencer. They just introduced some and they are v good and cheaper. 

Soon you'll get used to it all and it'll become second nature. I promise. You'll be back to normal, despite the bags, before youe know it.

Good luck,

Latestart x