Hello All, I just bought 2 books from Amazon

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schrek-chewbacca hunk
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Date Joined Jun 2005
Total Posts : 2666
   Posted 2/6/2009 11:51 AM (GMT -7)   
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 

Bella_lostmybag
Regular Member


Date Joined Dec 2008
Total Posts : 104
   Posted 2/6/2009 12:08 PM (GMT -7)   
Hey! Just letting you know that I'm only 17 and have an ostomy and AM SO HAPPY with the results that I got. I feel soo much healthier and actually just got back from playing basketball since getting sick because before I had the surgery, I was SO sick in the mornings and could never play basketball because I didnt have the energy. And now, I just strap on my ostomy belt and go play..and I play with all guys so they play HARD and ive never had my bag leak or fall off during a game :-) So if I can play hard with my bag and not have any accidents then I think your bag willl hopefully stand up to anything too =)
Hope this calms you down a little about your worries.
 
     Life's GOOD! yeah
17, SENIOR in high school
Dx with Ulcerative Colitis on March 18,2008
Step1 Ileostomy on Nov.19,2008..waiting on Step2 =]
"The past is history, the future is a mystery. Today is a gift, that's why it's called the present"


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 2/6/2009 12:27 PM (GMT -7)   
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! :-)
36 year old single mum to a 2.5 year old son
Suspected Crohns when 10 years ago had a very painful rectal abscess
Diagnosed with Crohns desease properly 6 years ago
2008 developed fistula bowel perforated onto bladder resulting in temporary ileostomy
hopefully a reversal around March 2009.


pepperann27
Regular Member


Date Joined Dec 2008
Total Posts : 147
   Posted 2/6/2009 8:31 PM (GMT -7)   
don't be scared its not as bad as it might sound. You'll get the hang of it!
thanks, Dusti

Diagnosed with colonic inertia at 13 years old, had my colon removed.
Diagnosed with rectal inertia at 16 years old, had my rectum removed and had a jpouch made.
Diagnosed with small bowel inertia at 18 years old, and got an ileostomy wich I still have. I am 27 now.
If you want to know more, just ask me!


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 2/6/2009 10:03 PM (GMT -7)   
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.
I have had an ileostomy for 33 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 2/7/2009 12:57 AM (GMT -7)   
schrek-chewbacca hunk said...
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 
We all like to share our war stories. But, to put your mind at ease, I have NEVER  had a pouch fall off: I have NEVER had a falty pouch; and I haven't had a leak in public in over 19 years!! The only leaks I have had since were caused by me..... eating too close to bedtime, or trying to squeeze an extra day out of my appliance when I knew I would be home all day.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 2/7/2009 2:14 AM (GMT -7)   
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 :)
I have had an ileostomy for 33 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 2/7/2009 5:31 AM (GMT -7)   
Leaks, for me, are Operator Error!!! Again, ditto to the above comments. Once you find the perfect fit, and have learned how to change it correctly, You Will Be a Pro!!! Don't sweat it. You notice, there aren't usually topics on here that say, "By the way, my pouch stayed on today." Again war stories is what we are sharing! We can laugh at them down the road, but I guarantee you that it isn't funny at the time!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 629
   Posted 2/7/2009 6:06 AM (GMT -7)   
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
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 2/7/2009 8:04 AM (GMT -7)   
Personally I've never had a bag pop off but I always wore the thin belt as extra security. I have woken up in the middle of the night to a bag so full it sounded like a drum when I tapped on it. But it never popped off. And the only leak I ever had was in the hospital, I guess the ostomy nurse did'nt do a good job. I would'nt worry about it just make it a priority to check it, and empty any chance you get.
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.
http://www.myspace.com/kendawg74


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/7/2009 11:59 AM (GMT -7)   
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.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/8/2009 6:38 AM (GMT -7)   
Yes, they are the minority! For every post on here, there are 1,000 people out there who DON'T have leaks/pouch problems...I'm one of them:)

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/9/2009 6:47 PM (GMT -7)   
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!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 2/9/2009 7:15 PM (GMT -7)   

What would I do without you all.  I really appreciate your help to me...and I see my surgeon again tomorrow.  I am sure I will have more questions and comments after that.  Especially since my wife is going out of town for 2 days.  Then I really start my "what if" negative thinking.

I am working on the mind/body connection - whatever you call it being meditation, prayer, guided imagery, biofeedback etc.  Although I do have a strong faith I believe in all forms of that mind/body/spirit connection.  I am hoping that will help with the mental issues associated with this.

Is it me, or by having the surgery planned 6 weeks out seems like torture.  I would almost like to have had it the day after they diagnosed its need.  Then I wouldn't have to wait and worry.

Perhaps it is just me!

Love to all

bob

 

 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/9/2009 8:20 PM (GMT -7)   
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. smhair i hope it doesn't happen again. But some would say I'm a little scatter brained at times.......scool
And if you try out a 2 piece, which I recommend you do, then learn from my mistake and make sure the bag clicks. rolleyes

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?
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

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