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CROHN'S/BAG/AND LIFE AFTER!!

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Crohn's Disease
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Posted 1/23/2011 2:59 AM (GMT 0)
Well...what can i say..

My heart goes out to all you young people facing up to and accepting a life with Crohn's disease.

But don't despair.

I am now 52 years old (look much younger)!!. I was diagnosed, after alot of messing about, when i was 17 years old. I had no idea at that time what exactly Crohn's was (soon to find out)! I thought i would go into hospital, have a bit of bowel removed, and that would be it. How wrong can you be. To cut a long story short, i had Crohn's on my small bowel, lots of surgery (just to remove the infected bit) yes ok, and then the abcesses and such like. Running out of bowel at this point!!!

But, let me interceed at this point, and give hope to all you young ladies, inbetween all this bowel removal and nasty stuff, i managed to produce 4 lovley babies!

Ok, i was really poorly when i was pregnant the first time ( its your bowels) but the last 3 times were fine.

All i am trying to convey in this, is, that bowels or no bowels, you can lead a normal, healthy, happy life.

Unfortunatly for me, the dreaded Crohn's spread to my large bowel and i ended up having the rest of my small bowel and large bowel and rectum removed. Ok, not a very nice preceedure, but, I would say, with the addition of 'the bag' the best thing i ever did.

I can absolutley empathise with all the thoughts surrounding the dreaded 'bag'. i ran away from it for many years, but, i can say, in all honesty, it was the best thing i could have done.

Ok, its not ideal, not something we would or could embrace, but at the end of the day it gives you a quality of life, not stuck on the toilet, feeling pain and unhappy.

It has been 7 years since i had 'the bag' and I cant lie, i have had quite a few embarassing moments, but i am pain free, and that makes up for it.

My life is not limited by my colostomy. I go on at least 3 long haul flights a year, i go to the gym ( when i can be bothered)! i go swimming, i wear what ever clothes i want, only trouble is, i cant find shoes to match my bag!!!

All i want to say in this message is: be proud, be you and be normal, life is good, just live it!

p.s.............am going to Kenya on Safari in 2 weeks, should i wear the khaki or the bag coloured?!!!!!!!!!!!

 

 

 

 

Posted 1/23/2011 3:28 AM (GMT 0)
p.s please feel free to to email me for a chat
Posted 1/23/2011 3:32 AM (GMT 0)
I just have to say I love your sense of humor! Makes dealing with things much easier!!

I hope you find shoes that match your bag ; )
Posted 1/23/2011 3:39 AM (GMT 0)
Good luck to you,hope all goes well in2011 xxx
Posted 1/23/2011 4:49 AM (GMT 0)
Thanks for the post Annie...one of my greatest fears is having surgery and ending up with a bag at some point in time. Reading your post gives me some hope that if I end up there, it won't be all that bad. I wish you all the best with your remission. :)

And you should wear khaki on your safari! Everyone does in movies! wink
Posted 1/23/2011 7:52 AM (GMT 0)
In regards to bag, how I got it..I just remind pregnant Crohns patients to have a c-section..that is if you are even aware you have it.  36 have had bag since 28 thank god! It is not that bad! diapers are awful! Try being in a hospital as you have a bleed and nurses are putting diaper ointment on you! I want to keep dignity!  I have a boyfriend,sex,men do not mind!..and can leave the house! could not before..it is not that bad! to all who fear...get over it quick!
Posted 1/23/2011 8:01 AM (GMT 0)
I have a bag and I would NEVER go back to the way I had to live before I had it. I've had many complications from the surgeries, and am living on borrowed time, but life is good now. Thank you so much for your post.

And ROTFLOL, Endeavor!! "shoes to match your bag"...that is hilarious!
Posted 1/23/2011 8:44 AM (GMT 0)
agreed..would never ever go backto the way it was! borrowed time huh? care to elaborate?
Posted 1/23/2011 9:02 AM (GMT 0)
No, not really, ljb. Not yet. :o)
Posted 1/23/2011 12:30 PM (GMT 0)
Love your attitude too, I also have the bag and have said the same thing, just can't find those matching shoes either lol. Its been a hard road but def a lot better than my life was before. Anyone that may be facing an ileostomy or colostomy its not a bad life at all. Take care all and keep smiling
Doreen
Posted 1/23/2011 12:49 PM (GMT 0)
I'm going for my first surgery in Feb and I'm kind of looking forward to waking up with a bag...if that can take the pain away...:-)
Posted 1/23/2011 1:20 PM (GMT 0)
ljb.. I know what its like to have a nurse put diaper cream on my butt from irritation from my dressings because my abscess has left me with two butt holes : p

and SaladShooter I wish I had the quick thinking creativity to come up with somehting like that but I can't take credit for it, ANNIEAU said it in her original post!

:)
Posted 1/23/2011 3:08 PM (GMT 0)
LOL...I sometimes pat my little stoma on the head and say, "I love you!" .
Posted 1/23/2011 4:21 PM (GMT 0)
Hi Annie and welcome to Healingwell. I am another who has had CD for over 30 years. I am glad to hear you are doing well, but wonder how prudent it is to be off meds. I did the same things once and it just made my CD worse. I do not have a bag, but if I were to have to have another surgery, the bag would probably be required, becuz the amount of scar tissue and adhesions I have would probably require it.

Not sure if you know this, but we have a ostomy forum too. You might want to check that out too. While we do have a chat forum, Healingwell is actually a support forum. A place to give and receive support. So hopefully you will find a home here and enjoy our little family. Hugs!
Posted 1/25/2011 11:18 PM (GMT 0)
Your story is very motivating. Im glad to hear that even with crohns youve had children. I am almost 23 years old, was diagnosed with cd about 6 years ago. Ive had the ostomy for about 4 years because of my anal fistula. My problem is im in love with my bf but he cant decide if he wants to be with me forever and see me get sick. His main concern is our future and how my health with affect our reltionship and having children. Please help annie confused
Posted 1/26/2011 3:25 AM (GMT 0)
I want to say thanks too... My doc and surgeon tried to talk me into a perm. ostomy last summer. I resisted, wanting to wait for the (hopeful) 2 new drugs in the pipeline. If those don't work, I'm done. I wish I could have done the ostomy as a temp surgery first, but they would not allow me to do the surgery unless I let them take the rectum. I suppose I could have gone to find another surgeon, but I trust my GI too. He said the risk is not worth the benefit of the surgery if the rectum (bad) stays. So... I scared myself away. Forever with an ostomy seems like a long time. But, forever of what my day to day is now, seems longer! I have a draining fistula and sex hurts half the time and I resist a relationship. For now that's ok because my girl is an age that I don't feel like dating is a priority anyway, but... one day. And that one day may well be with an ostomy. It's *so* good to hear/read your words. Very encouraging. I'm always thankful when happy ostomy people come forth and share! :-)
Posted 1/26/2011 6:23 PM (GMT 0)
Annia I had a child, an icredibly healthy child, but tore bad, so c-cection k? but as far s boyfriend have had same one for 8 yrs, no problem, just ge ton with life . cant be the desease.. ljb
Posted 1/26/2011 7:33 PM (GMT 0)
I am happy that my post brought some light relief and optimism to some of  you. Reading some of the other experiences on here just goes to show that its not all doom and gloom. I thank you all for your comments.

Krispy my heart goes out to you sweet heart. You have enough to worry about with your condition without having worry about your boy friends worries as well. Get your self as strong as possible, both physically and emotionally, concentrate on one day at a time. Read all the other accounts of women having healthy, happy relationships and babies, there is no reason it couldnt happen for you either.

I have been married for 32 years (can't seem to get rid of him)! I met him when i had just been diagnosed with CD and he has put up with all my crap (literally)! all these years. So don't depair, if he is the right man for you, you will get through it together.

Keep smiling

xxx

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