Hello All, I just bought 2 books from Amazon

They are Living Well with an Ostomy by Elizabeth Rayson and The Ostomy Book, Living Comfortably with Colostomies by B Dorr Mullen.

Has anybody else read them, What are your thoughts about them.  My surgery is about a month or so away...and I am trying to read up so I can be prepared as much as possible.

Honestly, the posts about leaks and bags popping off really do scare me.  Is this the minority or ostomates or the majority?  I could use a little encouragement here!  Sorry.

Bob

love to all 

From what I can gather the bags popping off bit is more likely to do with the two piece with the pouch not being put on properly.  As for leaks I also think that is mostly at the beginning when you are trying to find a device that suits you.  I suffered them a while back and thought that was my lot but I tried the one piece convex and (touch wood) haven't had one leak since and my skin has cleared up and I feel brilliant.  I also gather that leaks when you become more of a pro athis are mainly down to small mistakes made by the person so don't worry you will be fine and you will feel great.  Wishing you the absolute best of luck!

I have both of those books Bob. The Ostomy Book is fantastic and will give you a lot of great information on the types of ostomies and the emotional and physical aspects of living with one. I regard it as my 'Ostomy Bible'.

Living Well With An Ostomy is a good book too although I don't refer to it nearly as much as The Ostomy Book when I need info.

One book I would recommend is Alive and Kicking by Rolf Benirschke. It's about his life with UC and an ileostomy. He played for the San Diego Chargers while he had his ileostomy and it's a great read. He's active in the UOAA and often helps out with the younger ostomates there.

Like Vette Guy I've never had a pouch fall off or a faulty pouch. And like Vette Guy, my leaks are all my own fault. I've only ever had one public leak and that was 31 years ago. Please don't be put off by the 'horror' stories here and elsewhere.

Leaks will happen at first, but once you find the right appliance for your skin type, they will usually become a thing of the past. It's a learning curve, just like anything new. We've all been through it and survived and so will you :)

schrek-chewbacca hunk said...


Honestly, the posts about leaks and bags popping off really do scare me. Is this the minority or ostomates or the majority? I could use a little encouragement here! Sorry.



Bob

love to all

Minority. I'm 27 and have had mine now for 2 years. I use a hollister two-piece, go to the gym daily, do a lot of hiking/hunting, snowmobile and ride a motorbike. My job also involves a lot of physical activity and crawling around in tight spots. So far no leaks. I had a bag with a pinhole leak at one of the seams once, no big deal, 30 seconds to change the bag and it was good to go.

However! I have encountered several bags over the years where the velcro end, the velcro isn't in the proper place so the end won't be able to seal properly. Those go in the trash. I always inspect them before changing.

I think most leaks that i've read about can be avoided-operator error. Several times I've put on the flange and it's not in the quite right location-then you need to pull it off and start over...otherwise i believe i would have had leaks.

you'll love your life again once you get through this! :)

Matt

leaks are the mimority def! like they said its usually user error and its more likely to happen right at first.
once you get the hang of it, you wont have problems.

i just wanted to ditto everything already said, my ileo has just turned a year on the 29th and i thought i would b rushing to get it taken off as soon as the prescribed 6mos was up, but my quality of life has been so much better, that i'm in no major rush. i have my body image issues every once n a while, but its nothing compared to the constant pain and sorrow i was n before, everyone who knows me on this board can tell you how freaked and afraid i was b4 the surgery,but they allhelped me get thru it, and we'll b here to help you!

Hey Bob,
I just wanted to add something.
I have had leaks and it was my recent post about the bag popping off-which was probably my fault.
What may scare you about leaks is a misunderstanding about them. When I first started preparing myself for surgery, I read the stories and was very worried too. I thought when someone said "leak" that meant poo running down your legs. Like a hole in a poo bucket spraying all over the place. I imagined a little brown circle on the leg of my pants slowly getting bigger b/c of a leak!

But it's not like that at all. When we talk of leaks, we usually mean poo getting under the wafer (the part that sticks to your belly). When the poo gets under the wafer and on your skin, it's irritating and you're supposed to change it so it doesn't cause skin problems. It's just a little poo on your skin. It's not even very messy. And you can usually only FEEL it, not see it or smell it or hear it or taste it.......sorry I got carried away.

Yeah my bag popped off. yeah it was messy and gross. But apparently this is rare. i hope it doesn't happen again. But some would say I'm a little scatter brained at times.......
And if you try out a 2 piece, which I recommend you do, then learn from my mistake and make sure the bag clicks.

It's ok to be scared and unsure. I still don't know how I'm going to handle things. At least you don't have to worry about being pregnant with an ostomy (I mean that in a good way, b/c i do want to get pregnant)

I can't wait until I play sports again maybe this summer! I'm still sore though and TRYING to listen to these wonderful peoples advice and take it easy.
How are your books?