Hi everyone
Im so looking for support….
you may remember I had a 5cm tumour removed in January with amazing result is 22 lymph nodes all negative! It seemed a miracle & I looked forward to my little ‘flo’ (much as I grew to love her) being reversed.
Just over two weeks ago I had my follow up colonoscopy & today I got my results…
They found 3 polyps further along in the bowel where previously they couldn’t get due to the blockage, these were removed & today it was broken to me that a 7cm one was malignant. Today we have had the conversation with my amazing surgeon that we could remove another large part of my bowel or think seriously about removing completely the large bowel.
Tests for Lynch syndrome to be conducted & more discussions to be had… CT scan to follow shortly.
It would mean ‘Flo 1’ a colostomy would manifest into ‘Flo 2’ & in this scenario I wouldn’t have to suffer regular colonoscopies & would minimise more risk but I’m scared…
At the moment I suffer a lot of pancaking but I have fairlyregular movements & although loose PJ’s are the only way to go at end of day, my days are fairly Ok & safe!! Days where I’m more fluid I have embarrassing moments as the force of exit under my ostomy belt causes leaks in every direction..! I need the support as my job as a waitress entails heavy trays etc. & am very aware of hernia risk.
if I convert to a iliostomy which I believe to be a more constant flow will I always suffer daily leakage under belt pressure. I know I have to make sacrifices, I know we all do but I want a life, I want to work & I want to work safely but I don’t want to always be worrying about leaks & explosions!!
How different are the two… I’m brave, I’m ready for the next fight but I don’t want to smell or be scared to live.. please help!
Hi Fidge
Im sorry I can’t read your back story but from what I’ve read you’re going through it
I can’t speak for a colostomy as I’m an ileostomy since August 4th no reversal yet but six weeks after operation I stayed in a nice hotel, I’ve been out usually at least weekly to restaurants and I’ve travelled to Spain
Im flying to Ireland Monday.
I’m not telling you this to show off or anything i had massive incision and keyhole six hours and I was out in five days. so I want you to know it’s not all doom and gloom
My Ileostomy (Whoopi or whoops or whoopsadaisy) kicked straight in and after the initial learning curve I forget she’s there.
I eat, drink and enjoy life to the full.
Though I really miss sweetcorn most don’t.
I think the main difference though I’m not an expert is I empty most times I empty my bladder. I don’t eat late so I have a good nights sleep but that’s what works for me. The output is more fluid. It’s fine to manage. I’m wearing skinny jeans now
I was extremely careful with lifting in the early days though now not so much I haven’t got a hernia yet I do the pelvic floor exercises every time I think about it
After two leaks in the early days I’ve got it.
Hopefully.
Never say never
If I travel I usually take some extra products however I do pack white clothing so it’s really not a problem.
I don’t smell and neither does the bathroom I’ve had so many tips here that it’s all sorted
The most important thing is to get that polyp gone
Take care
Ann
Oh Fidge I’m sorry you’re feeling so upset. It’s such a shock and a lot to process and adjust to
Do you have support?
I do remember you and Flo as I hoped Flo flowed well
Whoopi is about an inch and a half lower than my belly button. The bag sits about half inch above naval on the right side. Before the op I was marked with pen asked to sit and stand though I didn’t have a clue what for. Now I wouldn’t wear anything tight around my waist but then I didn’t anyway
After op the stoma was flat and I was swollen and I found it a learning curve. Now she stands proud wears an Eakin slim and fits perfectly into the bag The output goes where it should.
It’s not water it’s thicker than I think you imagine. I don’t wear a pressure belt is that for a hernia?
Oh and I lost lots of weight and my diet is lots of naughty foods.
There’s always a plus!
Try and put it out of your mind today and have a kind day to yourself Do something you enjoy
sending you a hug x
Ann
Thank you
yes I have amazing support I am very lucky 
I think that’s the problem as Flo is tiny 20mm & is completely flat to the skin.. she’s quite a pretty girl from pics of some I have seen but guess pretty is just not enough 
I think a good chat with the surgeon will help.
yes the belt was recommended by stoma nurse to support & help prevent hernia. Mostly during the day it’s not an issue… like you I can wear skinny jeans & nobody would know it was there.
Have a lovely holiday xx
Hi Fidge
Thanks for the holidays wishes I’m going to see my grandchildren, it’s their 6 &7 birthdays the last time I saw them they were 3 & 4 Covids been horrible for all but the isolation and Cancer has been challenging
Ive been thinking back to my early days. Whoops was flat too and I had issues so I went to see my stoma nurses. They swapped my flat bags to convex with a belt. That was a game changer not only did the convex protect Whoopi wearing the belt encouraged Whoopi to come out. That then made it easy for the stoma function well without falling back behind that plate and causing pancaking
I don’t wear the belt now it’s there if I want some extra security.
Hopefully your stoma nurses will be able to reassure you.
Ann
