Anyone experinced an ileostomy and a colostomy?

hi there.. my partner has both bags following a total pelvic exenteration last november.. he has coped really well.. it took a bit of time trying to get the right bags.. but know he has it sorted. he has a leg bag during the day.. and a night bag for night times. his op was a do or die.. so he had no other option.. his main bugbear atm is a vav pump.. due to a wound that wont heal and constant leaking.. he eats and drinks what he likes .. and if he feels a bit blocked.. he drinks more orange juice xx

Hi Mandajayne, 

I think your answer may cause some confusion as it relates to total pelvic externation ( I also have the same!), which usually results in two stomas ( 1: Colostomy - for stools, 2: Urostomy - for Urine). The original post referred to having both an ileostomy and a colostomy ( I assume that is a temporary arrangement to let the bowel settle down before removing the original ileostomy and then relying on a permanent colostomy).

GM.

P.S. My TPE worked out very well and I am almost back to normality. Still probably another 6 months to go for it all to settle down but so far so good.

oh right.. thankyou for clearing that up lol... glad you are getting on well.. my partner is having a rough ride.. lots of complications.. but im sure time will tell 

Hi

sorry if my original post caused some confusion! I suspected it might as it's not the norm, but didn't quite know how else to word it!

i am talking about poop related ostomies only! So it will need to be people who have had an ileostomy first and then had it changed a colostomy, or vice versa, as obviously it's not physically possible to have them both at the same time! Not sure it's that common, but keen to hear from anyone out there who has had experience of both. 

Mandajayne im sorry to hear your partner is having a rough time of it. It's a whole new world to get used to, even when it goes smoothly. I can't even imagine what it must be like to be a double bagger. I hope things settle down soon. 

X

Hi

i had an ileostomy for four months from June-Oct 2018. I now have a colostomy. As a matter of fact I had both stomas formed in June, but the colostomy was non-operational initially (called a mucus fistula). In October I had the ileostomy reversed and the colostomy then started functioning. The details of why are on my profile. 

Wih the ileostomy i, like you, had no leaks. My diet was very restricted and I had to be careful with fruit/veg/fizzy drinks and fruit juices. I emptied the bag about every time I went to the loo as I hated the sensation of the liquid in the bag. I also had to set an alarm or two for the night to empty it, so lost out on some sleep. 

With the colostomy I had some issues with pancaking and a couple of nasty leaks. These were mainly in the early days before I found the right bags and also I had problems with the bags not sticking so well. Thanks to this site I picked up lots of tips on suitable products to help and vital information like warming the bags before application. As I’ve got to know the warning signs I’ve got better at managing the bag. For example, if there is any smell during normal wear it means a leak is starting, usually because of pancaking, so the bag needs changing. I usually change my bag in the morning after showering, and in the evening   Sometimes I have to have an additional change mid afternoon but my aim is max two bags a day!

On diet, it’s rather trial and error  I certainly haven’t been able to eat everything - veg have to be well cooked and fizzy drinks and cloudy apple juice are not great.  I am now starting to eat a small amount of salad. On the plus side I can drink red or white wine and on a recent trip to New York non-fizzy cocktails were tolerated- yay! Things continue to improve and I am hoping to give irrigation a try  I don’t know if this might be suitable for you in future but people who have succeeded say it gives them a whole new lease of life  

after my first surgery in June I was hoping to avoid a permanent stoma but was concerned about LARS.  Life with a bag is ok and at least I’m not having to dash to the loo all the time  

to sum up this rather long  post, in my opinion the colostomy is quite a bit  more maneagable than the ileostomy and sounds as if it would be an improvement on your current situation.

Do PM me if you want more info.

Good luck

Liz x

Thanks for your reply Camelializ. 

This is really helpful. Who knew you could have both stomas at the same time?! I certainly didn't, but I can understand why and how now! 

Seeing my surgeon later on today, so hoping to talk through the finer detail and get the ball rolling to progress with the op. What you have described is what I imagined it would be like. Thanks for your help. 

X