Help

hi  Ali Bali, go for little trips - up and down the garden, up your street and then a couple of street. It will buold your confidence. Don't drink anything a couple of hours before the theatre and stock up on marshmellows- Jellies, dry biscuits. I did this and it worked for me. Good Luck.

Thanks Kath x any advice on how to avoid leaks? I can’t figure out why it’s happening sometimes and not others x

Hi Ali Bali 

Its early days it takes a while for the stoma to form. Mine was flat so it found it difficult to put the output where it should it backed up and pancaked .
The nurses swapped me to Convex bags this guided the stuff where it should go. That was two weeks and I started to venture. I always wore dark colours to start and  bought a handbag with compartments that my travel spares went with me. Like Kath says start small. My hubby took me to a small supermarket and I pushed the trolley slowly he did all the lifting. It built my confidence slowly. First trip out for breakfast I was so anxious I talked about it here. It was fine. It’s just a confidence thing. I didn’t even think about it in no time 

Diet is a big thing too it took a little adjustments to get the right consistency of my out put. Stodgy in and stodgy out a dry cracker before bed slowed my output. We are all different. My main meals stopped at six. Then a dry cracker before bed for the first while until things settle  it won’t be long and you’ll be eating Chinese and a glass of wine if that’s your preferred treat  I ate basically anything as long as I chewed it until it was ground down  nuts gave me jaw ache so I didn’t bother 

It won’t be long and you’ll be going about eating most things and not thinking about it.

So I’d get your bags  checked by the nurses they can give you extra tape if needed. I used that when I stayed away. Dark clothing a cardigan  or jacket is good for security too.
And go for it

Good luck  keep us posted 

Thanks Artsie xx I am using the convex bags as I think I may have had the same issue with my stoma as you. I will try maybe a digestive before bed and see if that helps. Did you limit the amount of fluid you had? Also what is the tape called and I will order some. I believe you have now had your stoma reversed, I am counting the minutes til I can get that done, how did you find the reversal? Thanks again for the advice xxxx

Hi. I had a dry cracker. That’s what my stoma nurse recommended. 
I drank about 6-8 pints of Vimto and one isotonic sports drink non fizzy cheaper version than the well known one.

With an Ileostomy dehydration can be a problem. I’d have a headache and feel unwell unless I kept my fluids high. I also had high sugar and salt. That’s now tough to give up. Having a lot of fluids made sure I needed a wee often and I kept my bag only about a third full. Smoothing it down and checking the output was going where it should. 
Is your output thick? 
Brava elastic tape It sticks around the edges. It’s great security but I didn’t use it every day as it can make the skin sore. When I went to Ireland to see my grandchildren I was belted and taped. Ha ha nothing should get that bag off. I was sore but I had no leaks 

Are your leaks mainly when led down?

My reversal is now four weeks and improving  my rectum was removed so I have no storage it will take time  I go out once a week for breakfast apart from that I’m home 

I was tempted to keep my stoma but I didn’t want regrets so I took the chance  they’re not a priority operation so there’s a long wait  though some have had it done quickly it depends on their lists  

I hope things improve for you and you go out more  just grab your spares and do it  I took mine everywhere I didn’t use them once! 

Hi Artsie, my output is still quite watery most of the time, tbh I’ve been trying to keep my fluids to a minimum which I don’t enjoy (but I thought this would stop my bag filling up) The last 2 leaks I’ve had have been around tea time. Is there any foods that you would recommend avoiding? Sorry for all the questions x

Hi 

I kept a food diary so I knew what caused a reaction. My go to was white bread real butter battered Fishfingers with mayo. Not heathy but I enjoyed it and it caused me no issues. 
I remember drinking a blueberry sports drink. My output was green! Good job I studied art. Blue and yellow makes green and that’s what I got. 
If your watery it may be worth having stodgy food like mash and thickeners like marshmallows, jelly babies and a dry cracker wotsits did it for me too. I don’t even like them 

You have to drink loads with an Ileostomy it’s really important and empty every time you wee. The fluid that you have will be there anyway. It’s part of your system it needs thickening I know that this sounds opposite to what I used to think but the output increases without drinking lots  I found that odd too  but drinking and eating small meals really helps  

I had a piece of toast at 8ish, lunch at 12ish afternoon biscuit or cake with a cuppa and my evening meal would be before six and be mashed beige foods  dry crackers at tenish. Lots of fluids during the day. I found routine really important. My nights settled and I slept well within about six weeks though I was still uncomfortable from the op for a while 

Hope things improve for you and you can get out and do the things you enjoy 

Take cake 

Great advice thanks so much x I’ve just had my white toast and I’m going to try and drink cranberry juice today. Unfortunately I had to have my Fallopian tube and ovary removed as well as the tumour in bowel so it was a more complicated operation than they first thought, I love jelly babies and marshmallows so all good, thanks so much for all the advice, I’m finding it invaluable xxx

Hi Ali

It's really upsetting when you get leaks. I was prescribed Imodium (Loperamide) taken 30 minutes before meals to thicken my output (the Instant Imodium is best because it works faster). I also use Clinimed Ultraframe Flange extenders (code UFWAFH33), which works in the same way as the tape. You can get free samples from Clinimed. Your stoma nurse can check that you are using the right product. I found the Coloplast 2-piece Sensura Mio convex 2-piece best. Again you can get free samples from Coloplast. I'm sure you will find things improve in time and with a little experimentation perhaps. Good luck!

Hi Ali Bali 

 I’m happy to help if I can. I remember how I struggled to start

sorry late reply I’ve been out and left phone at home. I was cross because I wanted to take photo's of various frames on my face. I find choosing frames really tricky 

Catgirl2 has given great advice I used Sensura Mio too you can attach a belt to it but be careful when pulling down your knickers you may pull the belt down with it. Ha ha. I found big knickers the best. Hold it all in tidy and I bought nude not black as easy to see if leaks.  
 I really hope things settle once you start eating it should thicken your output. Like suggested I was given Lopermide but it didn’t agree with me. I scared self silly I took a capsule whole and it blocked until it dissolved! I didn’t think of putting it in water. I can be a bit silly at times  the dry cracker worked for me  I didn’t find them unpleasant to eat 

Enjoy your jelly babies and marshmallows.  X