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Crohn's Disease Forum » Surgery » Stoma Subforum » My biggest fear is losing my colon.


02-06-2012, 11:17 AM   #1
Stephy Chelle
 
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My biggest fear is losing my colon.

My biggest fear is losing my colon. What is the percentage of patients that lose their colons? Anybody know? I see how hard having a bag is on my grandma and it just worries me. I guess I just need people to tell me it's not that bad and if some of y'all out there think it is that bad then I need to know that too so then I can prepare if and when I have to have one. My grandma named her bag Dennis because it's such a mennis! She's a trooper! I inherited her colon issues, I hope I inherited her strength as well.
02-09-2012, 02:40 PM   #2
DustyKat
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Hi Stephy,

I don't have any experience in this area but I will move your post to the Stoma sub forum. I'm sure you will get loads of support and answers there.

Dusty. xxx
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02-09-2012, 03:02 PM   #3
Terriernut
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Stephy, most of us here would say having a bag saved our lives. And we support each other with the issues we have with it.

I wish I was 'normal' as in that I never got crohns to start with. I wish I had nice happy poos that plop! But I didnt get that normal life. Instead, I got Stan. Stan saved my life. I have to say what a relief Stan has been! I can lead an almost normal life! I have particular problems because of Ollie the hernia, but generally speaking, life has been sooooo much better after Stan.

I dont think most folks on here would disagree with me. Was it my biggest fear ahead of time...yes. Was it all much better than I thought it would be afterwards...yes.
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02-09-2012, 03:04 PM   #4
Stephy Chelle
 
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Thank you so much Dusty. Yea I am new to this forum. But that's obvious huh? Lol )) Thanks again!!
02-09-2012, 04:03 PM   #5
2thFairy
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I truly never saw it coming... my UC was limited and I didn't have hospitalizations or blood transfusions like several other people that have had colectomies; however, I failed all medical therapies and wasn't able to leave the house due to diarrhea, in pain, losin weight, and just plain miserable. My surgery was just a few weeks ago and already I can say what a relief!! I was in shock when my doctor first told me it was time for surgery, but six months later, I was ready.

It seems to me that most folks around here would agree that when the time came, it was a relief rather than a burden.
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02-09-2012, 04:13 PM   #6
cecilialynn
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Hi I have UC and I didnt see mine coming either. I lost my colon back in July 2011. It has been a godsent that i can now leave my home without the worries of where the next bathroom was. I have been doing wonderful, and just got the call yesterday for the reversal. I am so happy. But if i didnt have the call and was to have to keep the ostomy bag that would have been way better than what I have been through. Just like the rest of the peeps on here say ,it is bettert han the pain and the worries! Good luck.
02-09-2012, 07:08 PM   #7
vonfunk
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Getting a bag was a fear of mine since I was a kid, my great uncle had bladder cancer, had a urostomy, and then eventually the cancer came back and he passed away. that was about 20 years ago.
But I remembered the last few years and how sick he looked it terrified me because I equated it to having a bag attached.

Then I got sick, a couple years of hell, then they yanked it. I'm pretty much exactly the same as before I got sick, except I need to remove my pants far less than I used to. And if I'm not paying attention, the hangovers are way worse.
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02-09-2012, 08:25 PM   #8
littlefreebird
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i was always worried incase i would need a bag one day as it was always mentioned as a possibility since i was diagnosed in 2001.
...6 months ago, at the age of 21, i had my entire large intestine removed and ileostomy surgery. if i hadn't of got it when i did, i would have died...i wouldn't change a thing, i have my life back and have not had a single symptom or on any medication ever since, i have struggled with crohn's for 10 years and now i forget that i have a bag, it's no big deal, it's dead easy to look after and i have been lucky enough to never have had any complications or leaks etc.
i go out with my friends most weekends, most of them do not know about my surgery and have never suspected, i work full time- noone knows about my bag there either and i wear anything i want.

hand on heart, i wish i'd had it sooner and if i had to think of the only way this bag has had an impact on my life i would say it is having to get up in the middle of the night to empty- but saying that, i eat very late into the evening and i wear very small bags.

flick through some of the old posts in this forum, theres plenty of info and i put up a post with pictures in a few months ago.

all the best, hannah.x
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02-09-2012, 09:36 PM   #9
Bri
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Even with Crohn's I have this fear as well. Well, I have a lot of fears some more rational then others I am the type of person who worries constantly, has bad anxiety, and just can't wrap my head around things that are frightening to me. I will cry myself to sleep over it, so trust me I am in the same boat. If you ever want to rant or rave I am here!
02-10-2012, 08:39 AM   #10
Susan2
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Hi Stephy.

What is it about having a bag that your grandma finds so difficult? Is it anything practical that we can help with?

I have had an ileostomy bag for 12 years and, although I can't say that I am ecstatic about it, it has certainly improved the quality of my life. Yes, there are problems associated with it, but most of them are solvable and it has certainly enabled me to to do the majority of the things that I want to do.

Ask any questions that you want - most of us here have long ago lost our embarrassment about the bowel and its functions.
02-10-2012, 09:03 AM   #11
Stephy Chelle
 
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Susan,
My grandmas bag leaks bad. The skin around the opening is red and irritated most of the time. It's almost like it was installed wrong...not sure of the proper lingo pertaining to bags. She's tried everything. They can't go in and fix it so to speak cuz her health is so poor and she's 70 years old too. Thank y'all for responding to this thread, I really appreciate all of yalls support.
02-10-2012, 09:16 AM   #12
Terriernut
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Stephy....I vote your Gran become a member of our little club.

We have lotsa help here for her.

Like this: http://www.convatec.co.uk/engb/cvtuk...logytrade.html

The moldable might be a big help for her.
02-10-2012, 01:31 PM   #13
Stephy Chelle
 
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I'd love for her to be on here but she is stuck back in the 50's so to speak. She still has a land line, no computer, she doesn't even have a blue ray or DVD player. Lol Her and my Pop are way old school. They don't get out much either bless their hearts. Thank y'all again.
02-10-2012, 02:24 PM   #14
Misty-Eyed
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The op to get rid of my whole colon didnt save my life, but was the right choice for me at the time..

....I seriously wish I'd gotten rid of my colon sooner!!! There were years of awful years of pain and suffering thanks to my colon. I also never realised that if you only have crohn's in your colon, the chances of it coming back in your small intestin are small. Now I feel just like a normal person. I never have to worry about getting ill and having my life held back because of it.

Having a bag isn't perfect, but it's no where near as bad as I thought it would be. Let's face it, having a normal working colon isn't perfect either! Everyone suffers from constipation or dodgy guts at some point. Having a bag has lots of advantages too compared to the average human being!

So please don't be afraid for it to happen.. It can be a great blessing in disguise!
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02-10-2012, 02:35 PM   #15
Stephy Chelle
 
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Misty-eyed,
I absoluetly love that saying at the end of your thread. It is so true and eye opening for me. Just 15 little words.....such a revelation, truly. Thank you
02-10-2012, 06:22 PM   #16
Mountaingem
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I can empathize Stephy-when I was 19 I took care of my great aunt in hospice at home for almost two years with colon cancer, and I also equated her suffering with the bag. Her doctor did not do the best job with building her ostomy and most of her surgeries were done under emergency circumstances.

So I completely irrationally feared the bag for many years after I was diagnosed. But I have come to see that done correctly it can literally be a lifesaver. Once I became more educated about it here on this forum I've been able to change my outlook, so now I look at it as one more tool to utilize in the fight. It also has alot to do with how you view it-I personally think littlefreebird has an awesome outlook-so we can learn alot from others here.

No matter where your disease leads you everyone here will support you and encourage you. And by all means, get your Granny to our forum, we would love to talk to her and see if she can get help to improve her situation.
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02-12-2012, 07:51 PM   #17
littlefreebird
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thanks mountaingem
and i agree you cope with it how you want to cope with it.
'it is what it is', i could very easily depress myself if i wanted to but i could also just as easily focus on how amazing i feel inside.

my life only just began when i got izzy. i spent the majority of my crohn's years 'sleeping off' the pain, a lot of the time sleeping for 24hours straight at a time....my skin was weird from never being outside in daylight and i was frail.... my teenage years were bleak.
the actual surgery was the hardest thing i've ever been through but every single day as i grew stronger, i grew happier too.

totally agree with misty- it can be a great blessing in disguise.

i think this is a great thread to start stephy, cause most of us have had/or currently still have this fear.
02-13-2012, 03:11 PM   #18
Spooky1
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i'm terrified of having an ileostomy. mums had hers for 39 years and its still leaking like hell. think its got worse since she had her strokes. probably its weaken intestinal muscle or something, but her's is also very red, sore and bleeds. she does cry sometimes.

i just got to go for a colonoscopy cos i feel my crohns is back in the colon i got left. hasn't been there for 20 years. dreading it!!!
02-13-2012, 05:04 PM   #19
Susan2
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Spooky, that's really sad. I feel so much for your mother and must admit that I am a bit concerned about dealing with my stoma in my old age. (I'm late 60s now and doing fine at the moment.)

But there should be something that can be done for your mother. Does she still have contact with a stoma nurse? The equipment and ancillary supplies are so much better now and nobody should have to suffer in that way.

Sending to you and your mother.
02-13-2012, 05:12 PM   #20
Terriernut
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I agree with Susan, there's so many things that can help now! The local stoma nurses will come around to help. Wish I could give her a hug and some helpful advice personally!
02-14-2012, 05:21 AM   #21
Spooky1
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i don't thinnk mum has much to do with a stoma nurse at present as we both live quite a distance from hospital, so we tend not to bother unless its urgent.

i will mention it though. thanks both
02-14-2012, 06:50 PM   #22
littlefreebird
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spooky1. does your mum use any products like barrier sprays etc.?
also cohesive slims/ eakin seals are brill for protecting the area where the skin surrounding the stoma.
have a look around coloplast website, they will send free samples and you can order as many as you like!
02-15-2012, 04:02 AM   #23
Spooky1
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thanks bird will pass the info on to her
02-15-2012, 05:48 AM   #24
shazz
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I am day 13 post op from having my colon removed due to UC. Had a small infection but nothing major.
Feel very tired but due to the op its to be expected.
Other than those 2 minor things I feel fab. I can eat more every day, I don't have to rush to the toilet 20 times a day.
I had tried all meds available and was either intollerant to them or they didn't work. I then chose to have surgery. I was relatively healthy and had fully accepted I was going to have a bag when I woke up. The surgeon said if i had not had my op when i did I would have been in sserious trouble in about 3-4 days as my colon fell apart when they took it out.
My stoma saved my life and i am already confident in dealing with it.
I think a lot of it is to do with your mind set. If you don't want a bag and think you wont cope with it then you wont. But on the other hand if you come to some sort of acceptance of it then you can deal with anything.
Feel free to ask any questions. I am not shy about sharing!

Shazz Xxxxxxxxxxxxx
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02-15-2012, 08:23 AM   #25
Spooky1
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good luck for your recovery Shazz. My mum said she was generally a lot healthier after having the same issues as you. i got crohns and it starts in the mouth/nose and goes right the way through. you do sound like you're coping very well just 13 days after surgery. well done for getting through it. agonies though after surgery!
02-15-2012, 12:09 PM   #26
shazz
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Luckily they did mine key hole. No real pain to speak of but i have got a really high threshold.
Was out of bed less than 12 hours after my op.
Xxxxxxxxxxxxx
02-15-2012, 05:12 PM   #27
Spooky1
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omg, i had no idea that they can remove the whole colon through keyhole surgery. i tend to be awake whilst on pethadine (spelling) or morphine, unfortunately i scream blue murder at the slightest move. then... just to make matters worse, i cry and thus my stomach muscles all cut down hurt like mad. so i'm like that for four days and four nights. aaaaarrrrrrhhhhh. lucky you. pleased you're getting over it though.
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