Hi all just recently had a stoma six weeks in. Not getting any easier. Just wanted to chat to people going through the same thing. Thanks for reading.

Hi and a warm welcome to the board from me. I’ve had my stoma reversed now but I’m sure some of the other members will be along shortly.

Is there anything in particular that you’re struggling with? Sore skin? Leaks? Runny output? Too thick output? Yes we’ve all been there but more often than not there is a remedy and sometimes it can just mean tweaking your diet or trying a different type of bag. 

Ian aka is our resident expert for all things stoma so if you can provide a little more information then I’m sure we’ll be able to help you.

Take care

Karen x

Thank you for your reply Karen. It's just that it's all new to me I can't get my head around things mentally. And physically. I wondered do others feel like this and how long? I just don't feel me anymore. I'm not eating much have been trying to up my game. I have lost seven stone since June no appetite whatsoever. Again has this happened to others?. It started with diverticulitis and diverticular abcess and perforated bowel. 

Thank you Karen. Take care x

Hi , I had a temporary stoma in January last year which was reversed successfully in late August. It took me a while to get used to it, especially when I had leaks. I also had a lack of appetite & was worried about what to eat in the beginning. However, by trying a little of new food at a time I gradually reintroduced food until by the end of 7 months I was eating pretty much everything.  I write recipes for Ostomates under the Community blog ‘Dining with an Ostomate’. Do take a look, the soups & smoothies are tasty & appetising. It took me a while to be confident about going out, but I took it slowly & extended the amount of time I was out slowly. By the end of the 7 months I can honestly say that I had hours when I forgot about it altogether. I played tennis & walked the dog with no problems, even managed a few moves on the dance floor! I was concerned about how my output would be affected by the 7 rounds of chemo but I fortunately had no ill effects. Getting used to emptying & changing the bag took me a while but I had a great stoma nurse who was very encouraging. I think that I went into it all with a positive ‘can do’ attitude because I had no choice, having the stoma helped me heal from the surgery. I had a bit of a wobble when I was told I’d have to my stoma for at least 6 months not 6 weeks due to chemo, but just had to get on with it all. I hope that you have good support from your stoma nurse? Is there perhaps an Ostomy society near you? This forum offers great support. You are not alone. X

Hi, Mary

I know where you are coming from. Had mine in Feb 2019, (emergency operation with a 50-50 chance of surviving) due to small bowel sticking to an old operation scar and had 150cm of bowel removed. I lost about 3 stone. It took some getting used to as I did not know I was having one, very hard at the beginning but got used to it. Give it a name if you like, I called mine"Gollum", very annoying, small and could not get rid of it. I have now had it reversed early December, and after a few really bad days came home after 11 days. Must say that now I have never felt better for months. Keep looking on the bright side as things do really get better in time. Appetite will come back eventually. Keep on a low fire diet and don't get too despondent. I have put on a stone since coming home.

Regards and best wishes, Peter. 

Thank you for your reply Jersey Lilly. It gives me some hope of coming out the other side. It's nice to talk to people that have been through similar. I will definatley try your recipes. I need to get on top of this. Thanks again for your replyx

Unfortunately the stoma nurses are not very nice here at all. X

Hi bag man, thanks for your reply, it sounds as though you have been through a tough time. I'm glad to hear you have come through it. I will try and adopt your attitude by giving it a name. Yes I really do hope appetite returns. Thank you for sharing your experience with me. Regards and best wishes to you too. Mary. 

Hi again. Lost the reply I was typing last night so decided to try again this morning! 

Im glad to see that you’ve had replies from some of the other forumites and hope you’ve found them encouraging. Everyone has their own way of dealing with things but here are a few of the things that I’ve picked up along the way.

People who’ve had bad Bowel problems in the past have said that their stoma has been life changing as it’s allowed them to go out again without the urgent need to find a toilet.

People who have had their stoma after surgery have viewed it as a life saver as it has allowed the surgeon to remove a tumour/section of Bowel safely.

Like Bagman I too gave my stoma a name - Lily the Ileostomy. I was very open with people about having one (again a very personal decision) and if she used to gurgle loudly I would laugh it off and say ‘excuse you Lily’.

Clothing wise the only thing that changed for me was that I wore ‘big’ knickers as I felt it supported the bag better. I also wore a little camisole strapping top under my normal tops so if I stretched and anything rode up then the bag was still covered. I wore my same jeans but I’ve heard people on the Bowel Cancer UK Board rave about jeggings from Matalans being good value and also high waisted to make sure that the bag isn’t squashed by a tight waistband.

I lost about a stone after surgery and never managed to put in back on while I had the stoma. I presumed (rightly or wrongly) that maybe food now passed through too quickly so I wasn’t absorbing enough nutrients? If you can only face small meals then try and increase the calories by adding butter and cheese to mash potato for example and eating full fat yoghurts and custard. 

Sorry to hear that your stoma nurses aren’t very nice. My local nhs holds monthly lunchtime get togethers for stoma people which would have been good for you. Your bag supplier may also have a support team and sometimes they have a buddy up system where they can put you in touch with someone local to you who also has a stoma.

Ive attached a booklet below about eating well - it talks about eating well after Bowel Cancer surgery but it covers eating with a stoma and putting on weight etc. so I hope it helps you.

https://bowelcancerorguk.s3.amazonaws.com/Publications/EatingWell_BowelCancerUK.pdf

Take care

Karen x

Hi Karen. Thank you for your reply. Yes have had some replies and found them encouraging. As is your messege here. I hope in time to get my head around this. Your information on clothes is great. Anher thi g I need to address as I have nothing that fits. I don't understand the none appetite I have. When I was first admitted I had sepsis. I read online that when you are recovering it can take setime for appetite to return and weakness etc. It said can be months even hope that isn't so. Does anybody know if this info is true. years