Keep ostomie or not

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dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 2/25/2010 12:05 AM (GMT -6)   
I have had a colostomy for about a year now and I really want to reverse mine. I just hate it, it makes me self conscious, I can't wear half my clothes, I get covered in poop all the time. I stink (even my dog wont come near me at times from opening my pouch), its hindered my ability to make friends and my love life is none existant and I'm afraid it will remain so.

My doctor says that my abscess might come back. I'm willing to take that chance though. But if they do come back can I get an ostomy again if I have to? Also after reading posts from others it seems that reversal is Hell. Is it true, is the ostomy the better of two evils?
Diagnosed with Crohns Oct. '07.  Have had 9 abcess/ fistula surgeries.  Colostomy 20 March 2009.
 
Current Meds:
Imuran 200 mg                            Omeprazole 20mg                     Vitamin D 2000 i.u.          Remicade 10mg x8wks
Synthroid 112mg                          Lexapro 20mg                           Tylenol  50mg
Birth Control                                 Calcium  500mg                         Morphine 40mg
Sucralfate 1gm x4                         Multi Vit                                     Cyclizine   50mg
 


darksky602
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 2/25/2010 6:35 AM (GMT -6)   
Thats a GREAT!!! question and one i have been wondering about myself. My father has been thinking what he is going to do with his as well. (Both myself 29 and my father 61 have had to get ostomies from severe UC over the passed 3ish years.) He seems to have decided that he is going to stick with the pouch until he retires, because from what we both have read if he does the direct hook up of the small intestine to the little bit of large intestine he has left... he may have to go to the bathroom up to 15 times a day, and as a pharmacist he doesn't believe he would be able to do that and work. He said maybe after he retires. I as the 29 year old son am going to gamble and have my j pouch surgery as soon as I can lose the weight (currently 280 lbs, need to hit min. 230 according to doc) I figure if it fails and I pull through I will be severely disappointed but I believe I could accept it and just keep going. I want to give myself every chance, and I know I am never going to be exactly the same as I used to be, but I want to try. I am nervous about the having to go to the bathroom many times a day and wearing a diaper in certain circumstances but I think with watching when I eat and what I eat and doing my best to stay healthy I could adapt my life to control it.

When it comes down to which choice is better, I think it has to be made based on what we each feel we can handle. To all of those making this decision I give you my best wishes and hope for your success. :)

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 2/25/2010 6:52 AM (GMT -6)   
dreamer06~I am sorry you are having such a difficult time with your colostomy...have you talked to anyone (including your c/r surgeon) about the problems you are having? There are many things you can use to make your situation easier...for example there are deodorizers for the smell.

As far as being covered in poop...it sounds like the appliance you are using may not be the one for your body and stoma. A correctly fitting appliance should not leak. Maybe you could let us know what your stoma looks like, what appliance you are using and what products you use with it. Maybe there is something out of the ordinary that is causing that problem. Have you seen a WOC Nurse recently? sometimes our bodies change and we need to have our appliance re-evaluated.

As far as clothes...what makes it hard to wear half your wardrobe? You should be able to wear what you want...with maybe the exception of super low-rise jeans (but I even think there are a few posters who do!!).

Are all these concerns because of the uncertainty of your disease? It really affects all of us individually and I am really sad to hear what a hard time you are having:( Also, just because one person has a difficult time with a reversal, doesn't mean you will. I had a very uneventful reversal more than 12 years ago and didn't have any issues with recovery. I also had abscesses/fistulas that continued to get worse after the reversal so it wasn't long before I asked my doc for another!

Quality of life if very important and might be helpful for you to put your concerns on paper (or a post) so you can see them. Knowing that if you have a reversal and your problems continue what your options are before hand could help, too.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008

Post Edited (OHIO76) : 2/25/2010 10:23:43 AM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/25/2010 11:26 AM (GMT -6)   
i agree with them, you shouldnt have leaking, and you should be able to wear your clothes. i wear all mine, including lowrise jeans. Not the super lowones, you know the ones that show your butt, but the regular kind, with no problem. The only thing i have seen a problem with is a certain material that bridesmaid dresses and really fancy dresses are made of, it just clings to your body, course my fat self wouldnt wear that anyway!
but yes, you can go back to an ostomy, but really if the dr says you are just going to have problems with a reversal, i would try to figure out what the problem is with your appliance first.
Why dont you post what you do, and we can see if we can help
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 2/26/2010 10:36 AM (GMT -6)   
I ran across this in my Diabetes Forecast magazine.

For a patient wioth a chronic illness hope can actually be an obstacle. Researchers found that people who accepted their illness as permanent had a higher quality of life than those who kept wishing for a cure. The study which didn't focus on diabetes followed participants who had received a colostomy bageither permanently or temporarily and lkater surveyed their mood.People in the groupwho didn't anticipate a future without a colostomy bagreported being in better spirits six months after whille those waiting for better times felt worse. Researchers think accepting the situation as permanent helped the first group adapt to it more quickly. Ralph
When there are no more choices, tha decision is easy!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/26/2010 10:44 AM (GMT -6)   
Yeah i had heard that too, and it does make sense. If you are constantly hoping it will change, you will never accept it.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/26/2010 12:11 PM (GMT -6)   
Ralph~I think that is VERY TRUE!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/26/2010 1:06 PM (GMT -6)   
i will admit there are times, in the back of my mind, i think, maybe one day they will be able to make a fake colon and i wont have to do this anymore. But to me, thats not really that important, just something that would be nice if it happened.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 2/26/2010 1:38 PM (GMT -6)   
darksky "I am nervous about the having to go to the bathroom many times a day and wearing a diaper in certain circumstances but I think with watching when I eat and what I eat and doing my best to stay healthy I could adapt my life to control it."
 
Are you FORSERIOUS??????????? The reason I GOT Oscar was because at 32 I HAD to wear a diaper for alot of things. Thats bananas!!! Do you really want to go through that??....going to see a sporting event, going to see a movie, not being able to hang out at the beach/pool, standing in line....ANYWHERE, road trips, plane rides, walking in the mall, sitting in traffic for goodness sakes, all of that wearing a diaper or if your not, worrying about a washroom being near? Oh, and here's some advice...it dosen't matter WHAT or WHEN you put something in your mouth or how much you "watch what you eat" If it's going to come out, it will.
Wow, I just can't imagine WANTING to go back to that. I had to worry about those things for 13 years and now, would NEVER EVER EVER EVER EVER EVER (you get the idea) give up my freedom and quality of life that Oscar has given me. Oscar has made me healthy and as such I am doing everything I can to stay that way! Do you think I LIKE getting up at the crack of the Rooster's crow to get my ass to yoga or the gym when it's -30...NO. But I do, because now that I see what life can be like...Im grabbing it.
I hope you make the right decision for you. I know Oscar was the right decision for me.
 
-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/26/2010 8:36 PM (GMT -6)   
i know thats why i dont worry too much about it, lol. And its not like having a bag is awful, its perfectly fine and makes life good. Actually, in hindsight, having a regular colon might be annoying, lol.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 2/26/2010 8:54 PM (GMT -6)   
When I consider the pain before the colostoy, there is no question that I have acxcepted my bag and am committed to keeping it
 
Ralph
When there are no more choices, tha decision is easy!


Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 2/26/2010 9:08 PM (GMT -6)   
THAT IS COLOSTOMY
When there are no more choices, tha decision is easy!


damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 2/27/2010 6:58 PM (GMT -6)   
Wow if they come up with a fake colon i will be first to stand in line for it!!!!!! Then maybe i would feel half human again....
Very good thought i say. Also Dreamer06 i fully understand what your trying to say and ur not alone as i too feel the very same way when it comes to the smell,leakage,what clothing to wear ect!!!! I truly feel for you darling.....
 
sincerley,
 
Beverley.. damagedgoods.....
Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
Strive to be a success but rather to be of value!!!!!!!
 
Dont count the day's,make the day's count!!!!!!
 
No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    Cwoody
    New Member


    Date Joined Jul 2010
    Total Posts : 4
       Posted 3/11/2011 5:29 PM (GMT -6)   
     
    Hi, I had a Colostomy after I flew out of the shower while Praying, I had just lost my only daughter and was having my show down with God.  I slipped and it cost me three inches of my colon and an Ostomy I didnt want.  I got real sick from the first surgery and had Sepsis in the next Hospital and came home on IV's.  I was told I would have to wait until my colon was healed before I could have a Reversal.  I waited and October six of 2010 I had the Reversal Surgery.  I would do it again and to me the worst part of the surgery was the salty soup for the first three days and then I got put on a regular diet.  No diapers or any problems that people said I would have, they just didnt happen.  I have to take stool softners every day for the rest of my life, but that is a small price to pay.  I am not n any pain nor do I want that Ostomy back.  I dont even have to see my Surgeon anymore as he released me in December 2010.  I was Blessed to have a surgeon who gave me such a skinny scar after seeing what the first hospital had done to me.  I work out everyday and I dont lift weights, but I use my ab coaster and my stomach muscles are getting stronger.  I think if your going to have a Reversal then know one thing, each one of us are different and what some may say happened to them doesent mean it will happen to you. 
    I love getting dressed and going out and can't wait for the water slide park to open as I can live in a swimsuit.  I had so much Hope and I used that Hope to help me win this battle.  I wish everyone the best who has a reversal and also the one's that dont, it's our choice, but a lot of good can come out of a Reversal if you have the Right Surgeon and the right Hospital, God Bless You all, Cwoody yeah

    stripey
    Veteran Member


    Date Joined Feb 2011
    Total Posts : 1059
       Posted 3/11/2011 7:04 PM (GMT -6)   
    dreamer06, looking at your signature you have had a lot of abcess/fistula operations and so can understand why your doctor say they may cime back if you have your ileo reversed, but then again they may not. Only you can make the decision as like everyone else has said no two people's experiences are the same.

    What I would recommend you do is talk to your stoma nurse, is you are having leaking then the bag isn't sticking properly which can be easily cured with the right bag. Happened to me few months after my first surgery, suddenly my skin decided it dodn't like bag I was using and refused to stick to it. Problem solved changed to a different make bag, that was 18 years ago and still using same type bag, no issues. Same with the odour, only time you should get smell is when you empty it. Even then there are plenty of sprays/liquids/tablets you put inside the bag after each time you empty and it gets rid of the smell.

    Clothes issue, I wear whatever I want. I do avoid the very low rise jeans as they cut right across the stoma and whilst showing off your belly whilst pregnant seems to be the latest on trend thing at the moment, don't think showing off stoma bags has caught on just yet, maybe next year. All joking aside, I wear skin tight jeans and crop tops and no one knows I have a stoma unless I tell them. I can see it and that is probably what is making you self concious, but ask your family of close friend to come over and try on loads different clothes and ask them to tell you if it notices. You may be surprised.

    Lovelife, I was only 20yo when had first ileostomy done. I was single and it did cross my mind, who the hell was going to want me with a vacuum bag strapped to my stomach. However, 3 months after I met a guy and we went out for a few months and I told him on our second date as didn't want to get into too deep if he was going to run scared. He wasn't bothered one bit. Nor were the other 3 boyfriends I had nor my husband who I met at 22yo.

    Once you get the leaking and odour issues sorted then the only bar you have to a fulfilling life is your own confidence. Hopefully by sorting out the bag issues this will give you a boost and you can get back out their with your friends and find someone special.

    Good luck and hope you can get back to enjoying life again.
    Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

    Another UC wife
    Veteran Member


    Date Joined Jun 2007
    Total Posts : 2111
       Posted 3/11/2011 8:49 PM (GMT -6)   
    dreamer --- on another forum "irrigation" is often mentioned. I am not familiar with it except for those who do that say it takes about an hour of their time each day and then there is little to no output when it becomes time to irrigate once again the following day and so on.

    That might be a viable option to inquire about.
    64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.
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