Living Colostomy bag?? feedback pleaseee...

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Curt
Regular Member


Date Joined Apr 2005
Total Posts : 55
   Posted 3/24/2010 12:24 PM (GMT -6)   
Well my dr seems to think that if i go ahead with a colostomy bag at least for 6 months to a year... it will greatly help with the healing of my fistulas... is this true??? anyone have experience with this surgery....this is kind of urgent, last week an MRI found a abcess on my prostate so i think they need to go in and see whats going on....
 
few questions... how is life with the colostomy bag? is it easier or harder then living with so many bowel movements a day? This is a hard decision for me to make, im only 24 and i know people have gotten surgery like this done at this age... sad to say i know they never got switched back...10..20...30 years later, still with the bag... i just want some feedback of living with the bag... thanks everyone!!

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3071
   Posted 3/24/2010 2:10 PM (GMT -6)   
Curt~sorry to hear you are dealing with difficult fistulas:( I have had an ileostomy (from the small intestine) for the last 10+ years. My first was temporary and I had it reversed but my quality of life was horrible! I have since gone to another temporary ileo and then a permanent ileo, which was my choice, after all the meds failed with my fistulas.

If you go to the Ostomies Forum (quick jump) you will find many folks who have been in your position. Some, like me, will have their ostomy forever, but some do not.

My life is wonderful and the best part is I don't NEED to know where every bathroom is:)
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 820
   Posted 3/24/2010 2:57 PM (GMT -6)   
I never had a bag.

But my ex boyfriend had one. It was before I got CD he also had CD.
He felt so much better when he had the bag he could eat everything and was much happier in his tummy, but it bothered him having it. He was very shy about having one and was always afraid it was leaking.

It never bothered me though and I liked him as much with or with out the bag.
25 year old female from Iceland.
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they don't know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Humira, Asacol, Cipralex and Cerazette.
Past medication Remicade, Imuran, Entocort
My wonderful dogs :) ~ www.poodle.is ~


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 3/24/2010 3:28 PM (GMT -6)   
Hi Curt, I had a temp ileostomy done last year to allow healing to take place for fistula and resections even though the fistula had been operated on it still drains a little. I'm due my reversal 2 weeks today and to be honest I can't wait I hate having an ileo I have had a lot of issues with it since day one and hate the inconvienece of leaks, sore skin, deyhdration and limitation to what i can eat along with constantly worrying when out in public or at work that ill have a major leak. Sorry if i sound really negative, but this is just my personal experience it doesn't mean you will go through this with your colostomy. the best advise I can give you is do your research and get plenty of info before you get it done that way if you do have a leak, sore skin... etc you will know what to do. wishing you all the very best Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 3/24/2010 4:24 PM (GMT -6)   
Hello!
I just had surgery last week to get rid of my awful colon and now I've got a permanent ileo. They tried to talk to me about a j-pouch option but I didn't even consider it. I'm done with diarrhea. Done. I'm obviously really new to this but I already love the freedom of being able to LIVE without living in the bathroom or wondering where a bathroom is, and I can actually eat food, which is amazing (and something you should be ABLE TO DO). It's really an individual decision, but to me...if you're going more than like 5 times a day and feeling crappy and still watching what you eat, it's worth consideration for sure.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder...
 
Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on: 25mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Vesicare (for urinary retention). 


Curt
Regular Member


Date Joined Apr 2005
Total Posts : 55
   Posted 3/25/2010 1:02 PM (GMT -6)   
thanks guys for all the response... ive head about the leaks... if its random or maybe during sexual intercourse... isnt there a way, or a new invention for no leaking??? why does the seal leak? Thanks for the info... very tempting to get it done... i guess i will wait and talk with my doctor next week,.... thanks again....

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/25/2010 3:33 PM (GMT -6)   
I've gone back and forth for years. I've rejected pretty much all Crohn's meds except steroids, which keep me out of the hospital. Monday I had a break-down and thought, my daughter is going to be out of town with her dad next week. I should call my surgeon and just *have it done* and then *not* have to worry about a bathroom - and let the fistula heal... (I'd do temp) But of course, unless it's an emergency, spontaneous surgery didn't seem appropriate. Besides, then I get scared and just keep on the way I am. But this morning I was shaking from the pain and I get so very tired of that.

You are not alone in considering one. It seems that a lot of people who go ahead end up wishing they'd done it sooner. Sometimes I feel like refusing surgery (and the ostomy) is essentially keeping me a prisoner. As 80sChick says, it provides freedom. I know it has its downfalls (leaks, skin irritation, etc) but leaking through a fistula can't be better than having a bag. I just can't get the courage myself. I know it's the "right" and "smart" thing to do. I just get scared.

Good luck!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3071
   Posted 3/25/2010 3:52 PM (GMT -6)   
Remember, that just like our diseases, everyone's experience is different. Most people, who's stoma is properly formed/made, do not experience issues with leaks...and when they do it is usually user error!! There are WOC Nurses who match the appropriate appliance to your body and stoma...and should you experience issues, they will work with you to correct the problem. Sometimes, due to our diseases, you may have to have a stoma revision...I don't know many people who have had to do that, but my doc always said if I was unhappy with the performance, he could correct any issue that came along. I am going on around 10 years and haven't taken him up on it, nor do I experience leaks, and I am VERY ACTIVE!

Saying that, I feel horrible that crohnielass has suffered so much...but it really depends on so everyone individually.

My ostomy is so much easier to care for than the 5 fistulas I had yeah
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 3/26/2010 12:26 AM (GMT -6)   
OHIO that was good to read. I've just found out my disease has move to my upper colon so the possibility of a bag is now a little more real.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 3/26/2010 12:40 PM (GMT -6)   
I think if I had known about ostomies before hand I could of prepared myself, but I just came back from surgery with it and it totally freaked me out! I wouldn't have anything to do with it for the first week, but as OHIO76 states everyone is different and yours will probably be fine. I have a friend who has had an ileo for 9 yrs and was due to have it reversed back, she has decided to keep it for life now and have all the other bits taken away because she has had a better quality of life with it. good luck Bev x
Diagnosed with crohns at 13 now 43
Reversal of temp ileostomy finally have a date 7th April 2010
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 60mg (for Anxiety.)


" I may not be there yet, but I'm closer than I was yesterday."


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/26/2010 12:59 PM (GMT -6)   
Please do keep us in the know about whats going on with you n
what the doc says
lyn
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

I Refuse To Give Up....Others Are Worse Off Than I AmW

Donate to WWW.HealingWell.com
MEDS..Lyrica..Dilatin...Pentasa...Folic acid....Ativan..,Diazapam prn..Trazadone at HS..T 4s PRN

NEVER GIVEN UP NOR IN

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