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How Long Until Your Ostomy Becomes Part of You?

Posted by w30bob, on Sun Jan 12, 2020 6:27 am

Hi Gang,

  I've had my ostomy 5 years this past September and I still don't consider it "part of me" to the point where I don't give it much thought (like my hands and feet, etc). Does it ever just become "part of you" such that it's not on your mind 24/7......or is this "the new normal"? If it does become part of you then how long does it take? I realize that's a complicated question, as it depends on the situation (underlying cause for the ostomy, type of ostomy, possibility of reversal, disease reccurence or current disease activity, etc), and have no preconceived notions, but would just like to hear your thoughts.

Thanks,

Bob

Reply by xnine, on Sun Jan 12, 2020 8:11 am

Still on my mind since 2014. Wander what it is up to all the time. If you could feel it maybe you would not wander but you can not.

Reply by LetsGoGolfing, on Sun Jan 12, 2020 10:37 am

Hi Bob - I guess it really comes down to how you define "becomes a part of you".  I'm coming up on having my ileostomy for 30 years from losing my battle with ulcerative colitis back in the late 80s.  For me, having surgery resulting in the ileostomy saved my life - at the time I was a senior in college.   So acceptance that the stoma/pouch is a good thing, not a negative thing is my view.  It does take time to get completely used to all the little things that taking care of an ostomy requires... changing the pouch appliance every 5 days, that whole 45 minute process, don't let the dog jump up on my lap, etc.  It does become second nature eventually.   Good luck to you!  

Reply by ron in mich, on Sun Jan 12, 2020 11:03 am

Hi Bob it depends on what i,m doing, if i,m being a couch potato and its pootin then i,m aware of it but if i,m out snowblowing or trail riding in my SxS its not on my mind. I,ve had my ileo. for 35 yrs. so i,ve had a lot of time to get used to it. 

Reply by panther, on Sun Jan 12, 2020 11:14 am

There's no right or wrong answer everyone's different some people can never accept them. I've had mine coming up for 31 years since I was 19 for myself within the first 2 years. I've been around ostomys all my life my dad and uncle had them long before I was born so I see ostomys differently to most people to me there just the same as having a bowel inside, I never give it a second thought. I'm one of the lucky ones my ostomy was preventive surgery so never had any problems or felt ill before surgery some say it's harder to accept not being ill before I think it's just all down to how you are as a person we all accept things in our own way & time 

Reply by Tickpol , on Sun Jan 12, 2020 12:03 pm

I accept it as well as anyone I guess but that becoming a part of you requires some clarification.

I am not brushing my hair every hour.

I am not checking my shoelaces to make sure they are tied.

I don't take my own paper towels or soap to the public restroom for fear that there won't be any there.

I'm tall but there are times I forget to be mindful of "low bridges".

 

I don't ever think that my pouch will become a part of me; at least to the point being tall is.

 

The Leach will always demaind special attention.

It is what it is....

 

Dave

Reply by wiljpeters, on Sun Jan 12, 2020 1:24 pm

I had an ileostomy and it was never part of me... it was a thing that I hated more than anything. Now I've found my cancer has returned and I have to have a permanent colostomy. I'm not sure how I'll handle it since the temporary ileostomy almost destroyed me.....

Reply by PETey.13, on Sun Jan 12, 2020 2:47 pm

Hi 30bob, You need to go through the 5 stages of the Kubler -Ross Grief cycle. (Denial, Anger, Depression, Bargaining, Acceptance.) When you reach acceptance, you will quit thinking 24/7 about your bag. It took me 2 years, I've had mine 35 years. What LetsGoGolfing said. Cheers.

Reply by bowsprit, on Sun Jan 12, 2020 5:34 pm

I had the same question in mind. According to my Doctor people get used to it with time, which I suppose is the same as acceptance. He did not say how much time it takes. I even saw a psychiatrist but that was mumbo-jumbo and a lot of irrelevant questions. I suppose just as important is how long it takes for those close to you to accept it. I guess that old cliche about time being a great healer has some relevance here.

Reply by lovely, on Sun Jan 12, 2020 6:25 pm

Bob you sure post some thought provoking question LOL but that is why you post them right. I guess I accepted when I was told it was something I would have to live with the rest of my life. Do I like it no, do I wish I didn't have it yes. But it was life saving for me I had cancer of the female organs which I had to have radiaction after that surgery. Then I went for a normal colonoscopy which the DR could not do because the radiation had caused me to have a colon he said looked like a pretzel . So when they did some test for that they said my kidney was about to shut down and if they had not caught it I could have died. The radation had scarred the tube between my kidney and bladder and I had to have a stint put in to keep the tube opened. They did that before they did my colon surgery. I have to have the stint changed every six months. I have had my ostomey for 5 years.Sorry for the long post.

Reply by Puppyluv56, on Sun Jan 12, 2020 7:32 pm

I think everyone is different. I do not allow my Ostomy to dictate my life as much as I used to. I do have to take extra time to ensure I have all I need when I walk out the door but that is no different from being sure I have my purse or car keys. Traveling, just a bit more preparations. I do not think about my Ostomy 24/7. I have managed to forget about it from time to time untill it yells at me! I think that is successful! As far as becoming part of me, well it is part of me! It is the appliance that is not and if I had my way, they would make a valve to turn it on and off to just empty when YOU feel like it! Until then, guess I am stuck with the way it is! 
Puppyluv

Reply by Bagface, on Sun Jan 12, 2020 10:42 pm

I had a temporary ileostomy and hated it, but dealt with it pretty well, as there was a reversal in my future. Now, being "colon-less" I have to be mindful of what and how much I eat. I eat almost nothing before I go to a customer's home because my worst nightmare is having to ask to use their bathroom only to have their toilet not flush! And I know where the public restrooms are!  Any chance of a reversal for you Bob?

Reply by lovely, on Sun Jan 12, 2020 10:44 pm
wiljpeters wrote:

I had an ileostomy and it was never part of me... it was a thing that I hated more than anything. Now I've found my cancer has returned and I have to have a permanent colostomy. I'm not sure how I'll handle it since the temporary ileostomy almost destroyed me.....

 

Sorry you have cancer again. when is your surgery due? Hope this surgery will take care of the problems. Hang in there and let us know how it goes. best wishes

 



Reply by w30bob, on Sun Jan 12, 2020 11:07 pm

Wilj.....sorry to hear that and of course wish you the best! Hang in there and the good folks on here will help any way we can.

Bagface.......no, no chance of reversal for me.......unless they can find a way to grow me some new intestines. Technically, I guess I could be reconnected, but being short gutted with no ileocecal valve and only a third of my colon left.......if they did reconnect I'd be going from bathroom to bathroom all day and my ass would be on fire from all the usage.  So I have to deal with this ostomy crap for as long as I'm here. I am adapting slowly.......but I'll never get completely used to it......and that's ok.

Puppy.......I've had an occasion or two where I was busy and actually did forget I had my ostomy, but that's a dangerous situation for me. My bag can fill up so fast that if I'm not paying attention it can really ruin my day!

Regards,

Bob

Reply by Bagface, on Sun Jan 12, 2020 11:31 pm
wiljpeters wrote:

I had an ileostomy and it was never part of me... it was a thing that I hated more than anything. Now I've found my cancer has returned and I have to have a permanent colostomy. I'm not sure how I'll handle it since the temporary ileostomy almost destroyed me.....


Wiljpeters-So very sorry to hear this! 

Reply by countyclare, on Sun Jan 12, 2020 11:55 pm

I have an an ileostomy for many years. Because I was in a professional career, it was cecessary for me to return to work quite quickly.

Fortunately, I adapted to my ostomy very quickly and having it became "second nature" to me. I am very careful and take my time when I change my appliance.

I am careful not to eat past 8PM; I've had very few "leaks or mishaps" with my ileostomy over many years. 

 

 

 

Reply by britathrt60, on Mon Jan 13, 2020 2:45 am

 

I have had my Ileostomy for 20 years...and in all honesty I think about it all the time...it wasnt so bad when I was 20 years younger....always had supplies on hand at work just in case and carried on, but now it is always on my mind my bag fills up fast whether i eat or not...when Im going out at night which isnt  very often anymore I dont eat anything all day because it will be a nuisance running back and forth to the bathroom plus  at home I always get down on my hands and knees to empty so it doesnt splash everywhere. My friends dont understand when I dont want to go out places with them because of this so once in awhile I have to remind them about my ostomy....they think Im just being a hermit....which a lot of the time i probably am.....I would do a lot more if i didnt have it tho... it is what it is...Ange

Wilj Im so sorry to hear your Cancer is back...good luck with surgery...we will all be thinking of you....take care

Reply by Bill, on Mon Jan 13, 2020 4:49 am

Hello Bob. 

Thank you for another thought-provoking post. Like many things in my life right now, I cannot remember how many years I've had my stoma, but it's quite a few. 

I was one of those people who elected to have a stoma because of the pain and discomfort arising from many years of faecal incontinence and other conditions. So, there is a sense in which I adjusted to it even before the operation. 

However, this does not mean that, in an ideal world, I would not want rid of the whole set of circumstances.  What I find is that if I have other things to distract me, then the stoma becomes insignificant in my life and I simply get on with whatever is occupying my mind at the time.  If and when I am forced to attend to its needs, I tend to try to convert any adverse thinking into writing a verse or two.  This has the effect of making what might have been wholy negative, into a neutral or even positive outcome. By the time I've concentrated on the writing, there is very little extra time for feeling sorry for myself or having the negative thoughts affect my day. 

Reflecting on the hundreds of verses I have written (and am still writing) on the subject, it could be argued that I am still in the process of 'adjusting'. 

My own adjustment seems to be not so much to the physical aspects of managing the stoma, but the psychological waves of emotions like resentment at what might have been if I did not have to cater for the needs of the stoma and could live what others might call a 'normal' life.  Now I am that much older, I realise that 'normality' is a social and psychological construct, which has little relevance to the reality of life. Thus,  with or without a stoma, my life has changed considerably over the years, which is something I simply have to get used to. 

In one of my latest books entitled 'Laugh or Lament', I argued  for trying to stay lighthearted about all the asdverse things in life, so that we don't get so bogged down in the negatives that we cannot enjoy what is potentially positive. However, I do realise that the very fact of writing this sort of stuff  is perhaps a reflection of my own struggles to stay positive in a seemingly hostile environment and circumstances. 

Best wishes

Bill

 

Reply by Marilyn Flowers, on Mon Jan 13, 2020 1:26 pm

Hi Bob, I've had my ostomy for 56 years -- I was 15 at the time. I've accepted it as part of my life, if not part of me. I don't think of it all the time -- the more active I am, the less I think about it.  I have a routine so it's almost automatic pilot to maintain.

Reply by Newbie Dana, on Mon Jan 13, 2020 2:36 pm

I had a colon resection in 2011. Because of the shortened colon, and side effects from chemo and radiation, I had to deal with fecal incontenence and the resulting soreness and raw skin on my rear from constant wiping, and embarrassment which could happen at any time. I fought that with meds with little effect for over 4 years, until other side effects from the radiation treatment caused a perforated colon, peritonitis, and subsequent ostomy.

It did take several months before I really got used to the routine of caring for it, but I think the time it took to get used to it was shortened extremely by the fact that I no longer had the incontinence issues, or the pain in the rear (literally) from going and wiping all the time (and I do mean ALL the time!). My life was so much freer when compared to the hell I was going through BEFORE my ostomy, that I have come to look at it as my saving grace, not a foreign thing that would never be a part of me.

In fact, I had to go look up when I had it done to remember exactly how long ago it was - almost 4-1/2 years ago now.

I think a large portion of acceptance has to do with what your life was like before it. For someone who had a rich, exciting life prior to the sudden discovery of cancer or some other debilitating condition that led swiftly to the sudden acquisition of this foreign object that is now "part of your body", there's barely time to come to terms with the disease, much less the cure! A life post-ostomy is extremely hard to accept, because it it being compared with life pre-disease, not to life that would otherwise have been cut short. For those people who had a horrible time battling something like Crohn's or something similar for some years, acceptance can come a bit easier because life actually gets better.

Of course, there's exceptions to everything, and I could easily be wrong - I'm working off an awfully small sample size!

At any rate, life can be, and has been in the past, a lot rougher than I have it right now, so I am satisfied.

And puppyluv, I definitely second your opinion that they ought to be able to install a valve we can just open and close to take care of things!

Reply by looking forward, on Mon Jan 13, 2020 3:11 pm

mine has been a year (illeostomy) and it will never be a part of me--i still cannot accept the way i am now

Reply by sooziq, on Mon Jan 13, 2020 4:38 pm

Have had my ileostomy since April14,1977 I forget about it till it burns and needs changed.Saved my life Had UC real bad nothing helped no medication back then like they use now.

Reply by Marilyn Flowers, on Mon Jan 13, 2020 4:43 pm
sooziq wrote:

Have had my ileostomy since April14,1977 I forget about it till it burns and needs changed.Saved my life Had UC real bad nothing helped no medication back then like they use now.


I'm glad you're doing well.  I, too, had UC and had my first operation in May 1964. At the time, no one thought I'd live this long.  However, I'm pretty healthy for a 71-yr old. Best to you!

Reply by Newtothebag, on Mon Jan 13, 2020 5:42 pm

I have had mine a little bit over 10 years and think about it constantly. It is often on my mind. Not necessarily negatively but aware that I am different and have to do some things very differently than others. 

Reply by Bellily, on Mon Jan 13, 2020 5:58 pm

i'd say you might be on the verge of having it become part of you.  when it gets hardest, easy is right around the corner.

it took me over 5 years but after that i couldn't imagine a life with buttpooping any more.  it does have certain conveniences when you think about it, like never having a burning anus. 

Reply by estrogen, on Mon Jan 13, 2020 5:59 pm

I had colitis that was ruining my life. I had no control over when I would defecate ,it would just happen. I have been so embarrassed by having terrible accidents at the grocery store, at Walmart and once even in a casino. Embarrassing to say the least. It got to the point I didn't want to go anywhere. When they found a blockage in my colon which turned out to be cancer,they performed surgery and when I woke up I had the dreaded bag. I will not have the reversal because I still have colitis and I would have the same problem as before. I am thankful for the appliance as now I can control it and not worry about accidents when I'm out. So from my viewpoint I'm used to it because it has given me control.

Reply by CuriousSoulAstray, on Mon Jan 13, 2020 6:00 pm

No love lost between this thing and myself. I hate this thing; I lead my life ignoring it completely and leading a completely normal life. I have a system by which it is easy to ignore it. I take minimal care of it and it has worked well so far. One in a while if I'm not very agreeable I enjoy insulting it for a minute or two, very cathartice let me tell you. I recommended it, a Zen approach, totally. 

Reply by Silveradokid, on Mon Jan 13, 2020 8:34 pm

I look up toward the heavens and say "Thank You" pretty much every day. I wouldn't still be walking this Earth if my ileostomy hadn't been implemented. The challenges of living with a bag on the "outside' pale in comparison to the never-ending pain and discomfort and embarrassment of ulcerative colitis. When did my ostomey become a part of me? When I could accept it for what it is and began appreciating all the things I could do/enjoy. What others think of me is immaterial. I love going out to eat, even as my bag fills: I love going to the theatre (mostly off-Broadway now as B-way has gotten so darn expensive), even as my bag fills; I love cruising, even as my bag fills; heck, I even love my bag as it fills. Life is too short for regrets, especially when you did nothing "wrong" to begin with. Planning this year's vacations (a couple of road trips out West) and hoping everyone here finds their own reasons to embrace this, our new lives. New and better because we all know how horrible it has been... 

Reply by Mar1, on Tue Jan 14, 2020 12:10 am

I have had my colostomy for 10 years it is pretty much second nature now. I do have my colon trained and irrigate. Irrigation does make my life more normal than the bag. Hoping the new procedure now being performed in Europe will be in my future very soon!! 

Reply by Bosco, on Tue Jan 14, 2020 12:30 am

Bob:  your story similar to mine. They said acute UC and respected much of my small bowel in 1972. Great fir several years then finally diagnosed with Crohn's. 2009 removed part of descending colon, my sigmoid and rectum.

the hardest part of healing was the emotional/psychological. Do I yet believe it is "part of me?"  Probably never, but I know I have been healthier with the colostomy and I have been move active than the previous 40 years!  My colostomy is something I have no choice but to live with, but because of it I can feel good and be healthier. Yes, we have our frustrations and sore skin and leaks, but it is the price to pay. There are many more important things in life to have to deal with than my colostomy. 

at first I thought I needed to explain it away to everyone because they might hear, see or smell me. But now only if I have a good reason. Many people have known me for months or years without being aware of my friend. 

hang in there and "go with the flow". Ha haha 

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