Share Facebook
Crohn's Disease Forum » Surgery » Stoma Subforum » Nervous, possible colostomy


02-28-2010, 11:12 PM   #1
Jeff D.
Senior Member
 
Join Date: Apr 2006
Nervous, possible colostomy

So as many of you know I have severe scarring in my rectum. The past few days I've been having a bit of trouble going to the bathroom so today I stuck my finger up my butt to see how my scarring is. At first I couldn't even insert the tip of my middle finger in there. I had to slowly open it up with my middle finger. I think I'm going to continue daily opening it up so that it doesn't close up so much...hopefully.

So on to the colostomy topic. I'm nervous that due to the severity of my scarring that I'll need a colostomy soon. My surgeon told me last year that I "should" have a colostomy done and that was a year ago. I'm so nervous! I really don't want a colostomy. I don't have a problem with the scars on my stomach. I don't even have a problem with having the stoma sticking out of my abdomen. I do have a problem with me having to change appliances because I'm a terrible patient. I'm nervous that I'll put off changing it and things will get infected or something.

For those who have an ostomy, how much does it cost to buy the appliances? Those in America, do you have to pay for it or does your insurance pay for it?

Thanks

Jeff
03-01-2010, 12:01 AM   #2
imisspopcorn
Punctuation Impaired
 
imisspopcorn's Avatar
 
Join Date: Aug 2009

My Support Groups:
Jeff, I know this is probably such a scary thing for you to face this procedure....I wonder if the surgeon could recommend an ostomy nurse in your area that you could speak to? IMO knowledge is power. There are some good things about having a colostomy....Some people can "train" their bowels to evacuate at the same time everyday through irrigation...This is only possible with a colostomy....There may not be the constant emptying like with what happens with an ileostomy. I think the more knowledge you have, the less daunting it may be for you......Just a thought.
__________________
~*~*~*~*~*~*~*~*~*
Instead of hiding in the darkness of a grey cloud, why not look for the silver lining?
03-01-2010, 12:04 AM   #3
Jeff D.
Senior Member
 
Join Date: Apr 2006
Thanks, yeah that might be a good idea. My homehealth nurse comes tomorrow to give me my cimzia so I may ask her about it. I guess it's not the emptying but just the fact that I'm lazy. I hate that I'm lazy and I'm changing, slowly, and I'm just worried about leaving the appliance on their for too long. I also don't have much money so that's why I was wondering about other's experience about price of this stuff.
03-01-2010, 12:16 AM   #4
imisspopcorn
Punctuation Impaired
 
imisspopcorn's Avatar
 
Join Date: Aug 2009

My Support Groups:
I wouldn't say you are lazy!.....And I have heard that some people with colostomies don't always have to wear an appliance full time if it is trained....I don't have any personal experience, so I may be wrong....I doubt you would leave it on there too long...I think you are just worrying about the "what ifs"....Make a list of the what if questions......It may help you clear your mind......I'm praying for you my friend.
03-01-2010, 12:19 AM   #5
Jeff D.
Senior Member
 
Join Date: Apr 2006
Thanks, I will. I always seem to have a problem with the "what ifs".
I'm pretty lazy...or at least a bad patient. I forget to take my medicine and do simple things. I guess if I was feeling better I probably wouldn't be as lazy though.
03-01-2010, 02:41 AM   #6
Guest
New Member
 
Join Date: Oct 2007
Jeff... i'm pushed for time just now but i just wanted to say... like everything else in life, this kind of prospect is only frightening because it's an unknown area... if you get info'd up on life with a colostomy, the fear will be diluted - you'll know what to expect, how to deal with it, and other issues such as cost... have a read through of this site - there may be people there you can contact on a one-to-one basis... http://www.bhmostomy.com/

plus, i am quite happy to talk to you about my experiences off-forum... although mine is an ileostomy and different in some ways, a lot of things will be similar..
03-01-2010, 02:43 AM   #7
Jeff D.
Senior Member
 
Join Date: Apr 2006
Thanks Sue, I'll definitely check out that site.
03-01-2010, 11:06 AM   #8
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
Hi Jeff...I had a colostomy last December. Best thing that ever happened to me! Like you, alot of my disease was in the lower quadrant of my system and going to the bathroom was such a chore! With the colostomy I don't have any pain (I can't actually even feel when I'm going! That in itself is a huge change!) or discomfort.

Now that things are settling down and healing, I'm finding that I only change my bag once or twice a day. I always change it just before bed (if you don't it gets quite messy in there and is hard to clean) as I don't for the most part have any activity overnight. Depending on what I eat, I will usually change it in the afternoon or after dinner, and then at bedtime. The rule is to change it when it's about 1/3 to 1/2 full. There are days when I only change it at bedtime. It only takes a few minutes to change it (no longer than it would take to go to the bathroom the old fashioned way). I use a 2 piece bag/flange so I just take the dirty one off, clean my stoma off with warm water and mild soap, dry it off and put the new bag on. The dirty bag is emptied into the toilet and then I just run it under warm water till it's all clean (I do sometimes put soap in there just to give it a good clean a few times a week). During the day I also put a shot of mouthwash in the bag to lubricate it and to help with the smell (don't do this at night, otherwise you wind up with a milkshake in the morning and it's hard to clean....lol....live and learn!) The bags last a long time, I'm currently using ones that I bought 2 months ago. My ET nurse said you can use the bags till they literally fall apart. The flanges have to be changed between 5 and 7 days (that's the part that sticks to your skin) and I usually change mine when I have a bath, as it's easier to take them off if your skin is wet.

As for pricing, they're not cheap. In Canada the government offers a grant of $600 a year towards your appliances if your stoma is going to be permanent. Right now, my flanges cost $38 for a box of 5, $58 for a box of 10 bags, and $17 for the paste that goes on the flange (keeps the poo from getting on the stoma and causing an infection; although if your stool is very solid like mine is, you can get away without using it). They also have alternatives to the paste but they're more expensive, but aren't as messy. You'd have to talk to the rep at the store about them and their use. I've found that Coloplast is the cheapest brand, and Hollister is the most expensive. There are also different types of appliances like one piece bags (that's likely what you'll get in the hospital; I hated those!), the two piece bags with drainable pouches, or ones that you just throw out when they're full (those are expensive but are good if you're going out and don't want to deal with cleaning the bag in a public place, you just take it off and throw it in the garbage. They also have liners that go in the bag that you just flush, but I have no experience with these yet. They're on my list of things to try next! Also, get in touch with the companies that make the appliances, they send out freebies for you to try so you can decide what's going to work for you.

Sorry I'm so long winded....lol...my bag excites me! I can't tell you how my quality of life has improved! It's almost like I don't have Crohn's it's that good.

Good luck if you decide to go this route. Feel free to contact me if you need any more info or have any other questions. My boyfriend will be happy that he's not the only one who has to listen to me ramble about Oscar (that's the name I've given my stoma)....lol

Take care!
__________________
Cindy

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

03-01-2010, 11:08 AM   #9
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
Oh..I forgot...here's a link for info about irrigation. I haven't tried it yet, but might come summer when I'll want to swim.

http://www.ostomates.org/irrigation.html
03-01-2010, 11:12 AM   #10
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
Jeff D. said:
Thanks, I will. I always seem to have a problem with the "what ifs".
I'm pretty lazy...or at least a bad patient. I forget to take my medicine and do simple things. I guess if I was feeling better I probably wouldn't be as lazy though.
You won't forget to change your bag...it gets quite heavy if you don't...lol
03-01-2010, 01:07 PM   #11
Crohn's 35
Inactive Account
 
Join Date: Oct 2009
Hey Jeff!!!! I missed this somehow! Tough decisions are hard, and it isnt a vain t thing to not want scars. I have a railroad map but I am not 22 either. We all want to avoid the inevidable but I am sure when you do decide to have the surgery, like Nyx said it could change your world. You are stronger than you think, but I know it is scary and you just want relief? Hang in there, keep us updated ok? Big hugs xo
03-01-2010, 01:28 PM   #12
Jerman
Senior Member
 
Jerman's Avatar
 
Join Date: May 2009
Jeff, good luck you will be in my thoughts and prayers.
__________________
Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.
Kahlil Gibran
03-01-2010, 02:20 PM   #13
Jeff D.
Senior Member
 
Join Date: Apr 2006
Thanks guys. I guess I had some of my thoughts mixed up. I thought you had to throw away the bags daily, that's what I was afraid of not changing. I don't think I'll have a problem remembering to empty the bag but more with changing the flanges and bags themselves when they start falling apart and such.

Thanks Nyx for all the advice. It's helped a lot.

Pen, I don't really mind having scars, I could say I got them in a knife fight to gain some street rep.lol Well, I wouldn't be totally lying. It's a fight that I'm having with my surgeon that will eventually either this year or another year end up in me getting cut with a scalpal, knife.lol

Jerman, thanks for the prayers.

Thanks all of ya'll. Ya'll are awesome!
03-01-2010, 05:12 PM   #14
Jennjenn
Senior Member
 
Jennjenn's Avatar
 
Join Date: Feb 2009
Location: New York
I hope everything works out for you Jeff. I do also hope that you can feel well soon.
03-01-2010, 05:23 PM   #15
Jeff D.
Senior Member
 
Join Date: Apr 2006
Thanks
03-02-2010, 11:47 AM   #16
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
Jeff D. said:
Thanks guys. I guess I had some of my thoughts mixed up. I thought you had to throw away the bags daily, that's what I was afraid of not changing. I don't think I'll have a problem remembering to empty the bag but more with changing the flanges and bags themselves when they start falling apart and such.

Thanks Nyx for all the advice. It's helped a lot.

Pen, I don't really mind having scars, I could say I got them in a knife fight to gain some street rep.lol Well, I wouldn't be totally lying. It's a fight that I'm having with my surgeon that will eventually either this year or another year end up in me getting cut with a scalpal, knife.lol

Jerman, thanks for the prayers.

Thanks all of ya'll. Ya'll are awesome!
Trust me Jeff, you'll get poop on yourself once and you won't forget to change your bags or flanges again! lol
03-04-2010, 01:13 PM   #17
merrywidow
mum with a dogdy tum
 
merrywidow's Avatar
 
Join Date: Oct 2007
Location: eastbourne, United Kingdom
Jeff D. said:
Thanks guys. I guess I had some of my thoughts mixed up. I thought you had to throw away the bags daily, that's what I was afraid of not changing. I don't think I'll have a problem remembering to empty the bag but more with changing the flanges and bags themselves when they start falling apart and such.
!
jeff, i change my pouch everyday and pouch and flange every 2 days. post surgery you must be extra clean with hand washing, as this can give you infections. because you will have stictes. but once that is all healed the is hardly any chance of infection. though good hygiene is recommened. you wouldnt have a normal poo without washing your hands would you?
if you dont change your flange, for what ever reason, you may get a leak, and stomas tend to choose a good time to leak!!!
i change my stoma in the morning, before breakfast. then i know he is "safe" for the day.
another hint is to shower/bath first, as the pouch takes ages to dry if you change it before.
if there is anything else you need to know, you know where i am.
__________________
crohns diagonsed dec 12th 1997

fred (stoma) was born on sept 10th 2003


life is like a loo roll, the nearer to the end you get the faster it goes.

memories are what makes life, life is what makes memories, make them good

sharon x
03-04-2010, 04:40 PM   #18
Jeff D.
Senior Member
 
Join Date: Apr 2006
Thanks ya'll. I'm feeling much better about the idea.

I'm a pretty clean person, I'm kind of a germaphobe so I always wash my hands for 30 seconds...sometimes more and some times I'll do mutliple washings.
03-04-2010, 05:16 PM   #19
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
merrywidow said:
jeff, i change my pouch everyday and pouch and flange every 2 days. post surgery you must be extra clean with hand washing, as this can give you infections. because you will have stictes. but once that is all healed the is hardly any chance of infection. though good hygiene is recommened. you wouldnt have a normal poo without washing your hands would you?
if you dont change your flange, for what ever reason, you may get a leak, and stomas tend to choose a good time to leak!!!
i change my stoma in the morning, before breakfast. then i know he is "safe" for the day.
another hint is to shower/bath first, as the pouch takes ages to dry if you change it before.
if there is anything else you need to know, you know where i am.
How much do your appliances cost there? And do you have an ileostomy or a colostomy? I was just wondering why you change your flanges so frequently (my ET nurse said to try and go a week if I can before changing so that it doesn't irritate my skin).

I always have a bag drying on the towel rack....lol
03-05-2010, 02:58 AM   #20
merrywidow
mum with a dogdy tum
 
merrywidow's Avatar
 
Join Date: Oct 2007
Location: eastbourne, United Kingdom
we get the appliances free, all people with perminant stomas do.
my flange would never last a week!!!
i have a ileostomy.
a bag drying on the rack? dont you throw them out? i would never reuse then.

Last edited by merrywidow; 03-09-2010 at 09:00 AM.
03-05-2010, 08:13 AM   #21
danman
Senior Member
 
danman's Avatar
 
Join Date: Sep 2008
Hiya Jeff,
my illeostomy was the best thing that's ever happened to me healthwise.

You've got to into this with a positive attitude. I knew at the time that my life would be better, so I welcomed the proceedure. In fact, the surgeons wanted to delay my operation but I insisted that they go ahead.

I use a 2 piece and change the pouch every day (30 seconds) and the flange once a week (20 minutes). I empty the pouch about 4 times a day, much less that I had to go before.

As for price, I get mine for free here in Ireland too. The glory of social healthcare
__________________
Diagnosed - July 1989.

Currently enjoying life with my stoma.
03-05-2010, 10:23 AM   #22
Nyx
Moderator
 
Nyx's Avatar
 
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
@ Sharon and Dan...Free!!! OMG..I need to move immediately!!!!! Damn....

@Sharon...I use a two piece system and I reuse my bags (I use them till they fall apart). I wish I could afford to just throw them out, but alas, I can't! Besides, they clean up really well and only takes a few minutes to do. The mouthwash that I put in helps with the smell and lubricating the inside of the bag too. I bought some disposable bags, but don't use them that often as they're very expensive...I only use them when I go out.
Reply

Crohn's Disease Forum » Surgery » Stoma Subforum » Nervous, possible colostomy
Thread Tools


All times are GMT -5. The time now is 11:08 AM.
Copyright 2006-2017 Crohnsforum.com