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What can you no longer do (or enjoy) now that you have an ostomy?

Posted by w30bob, on Sun Aug 04, 2019 4:18 pm

Hi Folks,

  Just wondering what it's like for everyone else with an ostomy, in terms of activities/hobbies/etc that you can no longer enjoy because of your ostomy.  I realize the type of ostomy and underlying condition(s) dicatate your answer, but I'd still like to know.  For me it's not so much the ostomy itself that curtails many activities I used to do pre-ostomy, it's the fact that I'm now short gutted and have so much damn output.  I'd say what I miss most is spending long lengths of time in the pool/ocean.  I still go in both, but don't stay wet for too long, and am always concerned about my barrier's adhesive having issues, especially if I'm sweating. My other biggest issue is contact sports, as being bumped into frequently would not bode well for my poop filled water ballon stuck to my abs. 

  So what are you no longer enjoying?.......you never know.....if you list it here someone might have found a way to get around your problem and let you in on the secret.  So post away!

regards,

bob 

Reply by xnine, on Sun Aug 04, 2019 9:31 pm

Sleep when I do not want. I need naps. Awake went I do not want. Awake through the night.

Past Member
Reply by Past Member, on Sun Aug 04, 2019 11:40 pm

Hi Bob

Thank you for your post.  I just want to share my experience because I face the same challenges you do such as trips to the bathroom many times daily, leakage in public, sex, etc.  (many of us do).

For me, after 39 years with an ileostomy, when I wake each morning I thank God for everything I have and can do and still enjoy. I never focus on what I cannot do or do not enjoy. My ileostomy does not stop me from doing anything I enjoy.  The only thing that I do not enjoy is watching the news!

I focus on the things that I have been blessed with and grateful for that outweigh any adversity I face in life.  For One:  I wake with a joy in knowing I am loved by God through His son Jesus Christ. Two: I have a relationship with the Lord who brought grace and truth into the world and is my strenghth, my joy, my peace.  Three: Even when faced with adversity, challenge, opposition and even persicution, I am still calm, loving and forgiving and that only comes from the Wisdom of God, faith and trust in the Lord.  

This did not come overnight, this comes from enduring many years of pain, suffering and loss and a strong faith in God.  

Prayer is powerful and life is good.  All together lovely.

Take care and good night.

1 Thessalonians 5:8-10

Romans 8:28

John 3:16

Reply by NancyAnn, on Sun Aug 04, 2019 11:45 pm

Hi, I have had a urostomy for 57 years. The ostomy isn't what gets in my way. Because of all the surgeries I have had in the abdominal area since I was born I now have short bowel syndrome to a point and I have to be careful with what I eat and all that. I had actually asked my gastro doctor if we could do a colostomy or ileostomy because I can't  handle the accidents or having to back out of things all the time. 

My ostomy is the least of my worries.

Reply by Immarsh, on Mon Aug 05, 2019 5:11 am

Hi Bob, 

 Welcome to the site.   My name is Marsha,  and i've had my ileostomy for more than 50 years,  since I was a child of 15.   I learned a lot along the way.    After 4 years, and multiple surgeries, for UC,    I was glad to accept my ileostomy .   It  allowed me to go back to school, and have a " life".   I dated, and parties,   joined youth groups,   hiked, spent days at the beach and pools, aand even went camping.    That's when I was young and had little to no anxiety.    I always knew I'd have to modify, and adapt....and sometimes things w eren't easy.   But I had a zest for life and wasn't going to let anything keep me down.   I  dated, married ( a man with an ostomy),  had & raised two children,   went back to school , graduated as a teacher,  got divorced, and then really began  living, doing things I've always wanted to do.   I travelled all over the US,   with a friend in a single engine plane ( no bathroom).   Ok....once we did have to land in a cornfield unexpectedly because of me...   No big deal.   We also  flew cross country, to Canada, mexico, the Carib and even to Haiti.   I found I love to cruise, and got to snorkle.... Like you , I love anything on, in or near the water, and am always cognizant of where the closest bathroom is.   I always have supplies with me ( especially tape),   and there are times I had to change my  appliance in the most unexpected places.   But over the 50+  plus years, not as much as you might think.    THe urge to travel was persistant.....and I've been all over the world....England Spain, Eastern Europe, Malta, Italy, and then on to more exotic destinations..... Israel, China, South Africa, Japan, and Australia ( 7x)   to visit my son and his family who lived there.    I've snorkled  on the Great barrier reef,  flown by helicopter, to a glacier in Alaska,   walked on the great wall of china, swam in the dead sea......and enjoyed seeing so much of our beautiful world.   With my teacher schedule, I decided to take bits and pieces of my retirement,   while I was young and healthy enough to do it, and I don't regret it...   I'd still be galavanting around the world, but I've had some medical and financial issues that have " clipped" my wings...   but I truly believe that anything is possible with t he right attitude.    Best of luck to you..    You're healthier now.....so explore what you want and can do, and enjjoy..   feel free to write...Marsha   

Reply by w30bob, on Mon Aug 05, 2019 10:13 am

Hi Guys,

  Thanks for posting! 

Xnine.........wow, almost forgot about the sleeping (or lack thereof) thing......thanks for reminding me.  Yeah, it sure would be nice to be able to sleep whenever or just sleep late on a Sunday.  I do miss that freedom.

Songbird........I'm always impressed by those who follow a conviction.  I've never found any religion believeable, but I always admire those who do.  I look at it this way......when you die there either is an afterlife or there isn't.  If not, then none of this matters.  If there is, then I blame my skepticism on the one who created me this way.  At this point in my life I'm leaning toward the former rather than the latter, but I always keep an open mind and try not to form pre-conceived notions.  We'll know soon enough.........once we make contact with the beings routinely visiting our planet all this will become crystal clear.  Hold tight, it's gonna be a wild ride.

NancyAnn......I'll message you.  Glad to find another short-gutter, that makes 4 of us on here so far that I've found.  I think you can add some real perspective to my quest for knowledge on here.

Marsha......what can I say.........girl you rock!  Finding people like you who give the middle finger to adversity is always uplifting.  I'm going to always remember you whenever I question whether I should do something or not because of concerns about my fecal man-bag on my abs.  I will say that many of the things I tend not to do aren't because of my own embarassment, but rather to shield those I'd be in contact with from getting weirded out.  I'm not shy by any means, so I'll do or say anything.........but I don't like making those around me uncomfortable.......and whipping out a plastic bag full of shit to empty it does sometimes make people uncomfortable, if not a bit confused.   

Keep the replies coming! I think the more folks post and reply the more everyone learns on here!!

Have a fantastic day everyone!

regards,

bob

 

Reply by warrior, on Mon Aug 05, 2019 10:19 am

I miss having,a,good nights sleep! Like clockwork. 3 a.m. 4 a.m. Gotta,drain. I missed dressing sharp. I do enjoy eating anything and being med free. I just wish placement of the bag could be some other place. Learning what to eat before bed time really helps you better sleep but I have not sleep through the night since 2016 post op.I hate the constant awareness of feeling this appliance attached to me and often an odor attached to it. Usually b/c of leakage or trying to leak, that Oder,exists. I miss being physical. leaks aren't much of a problem now. I'm hoping my attitude changes hearing stories of these brave ostomate " letting it all hang out". I'm just not there yet.

Reply by w30bob, on Mon Aug 05, 2019 11:03 am

Warrior,

  I'm right there with ya brother...........I've got a ways to go before I'm there as well.  I used to make fun of my younger brother a lot when I was a kid.  It probably influenced his future to some extent, so I tell myself God is punishing me for being mean to my bro.......and I can accept my punishment.  I don't really believe in God, but it does keep me from going insane with this bag of shit stuck to my abs.  We all have our demons, I guess.  Thanks for posting!

regards,

bob

Reply by NancyAnn, on Mon Aug 05, 2019 11:22 am

w30bob, I was born all screwed up. My insides had to be re-arranged and was born withoug a rectum. But they created a rectum (which they should have left the colostomy) and then at 2 years old my bladder gave out. So they gave me a urostomy. Now if I wanted a colostomy or whatever, there is nothing to work with. So I have to "live with it" the way it is and make sure I am near a bathroom. But, you know what I deal. Like I said the urostomy is the least of my worries. I am the president of my support group and I am also an ostomy visitor who if a doctor has a patient going for the same surgery as I had they have you go and talk to them. I have met some amazing people because of this ostomy. 

Message me anytime. Hope to hear from you. Take care.

Reply by warrior, on Mon Aug 05, 2019 1:44 pm
w30bob wrote:

Warrior,

  I'm right there with ya brother...........I've got a ways to go before I'm there as well.  I used to make fun of my younger brother a lot when I was a kid.  It probably influenced his future to some extent, so I tell myself God is punishing me for being mean to my bro.......and I can accept my punishment.  I don't really believe in God, but it does keep me from going insane with this bag of shit stuck to my abs.  We all have our demons, I guess.  Thanks for posting!

regards,

bob


right on Bob. I feel same,way. I was a real man ho growing up. Broke many hearts. Punishment, indeed. He's made me disfigured, smelly, angry..and that's the price I pay.

Reply by Tickpol , on Mon Aug 05, 2019 5:02 pm

I've had Crohn's since I was a teenager and this is my second ostomy.  I'll admit that having an ostomy is a lot more traumatic at 21 than it was at 59.  At the time having the body beautiful was a higher priority than it is now!  LOL

 

I'm happy to play the hand I'm dealt and like you I'm still working out the issues that come with having a short bowel.  Having Crohn's is like being tall, tall folks are much more aware of low bridges. LOL

 

Even though I'm comfortable in my latest configuration I would appreciate the convenience that comes with being "standard".  Picking clothes because of look rather than "fit".  Eating new foods without considering the timing and possible consequences.  Sleeping through the night or at least without suddenly waking up from a dream of having an equipment failure.  As a kid I would be in the water all day long in the summer.  I miss that when I think about it.

But missing and regretting are two different things.  I don't regret not be "normal".  I wouldn't know how to act anyway! LOL

I feel bad for the people who feel bad for me.  I don't feel bad for me.  I'll have my 21st surgery in a few weeks and that's not a detour in life but a somewhat expected maintenance.  It just is what it is.

Actually I think it's funnier how many people I know who struggle worse with aging than I do with my Crohn's.  They proudly hurt themselves trying to prove that  their body can still do  something for which its warrantee has expired.  I have no illusions or expectations of how my senior life will be.  I have earned my rest.  I have earned my right to smell the flowers.

My collection of scars laughs at their collection of running medals and worn out workout gloves.  I keep my shirt on not out of fear of embarrasing myself but rather to keep from offending the medical snowflakes.

I've lived a good life.  I've raised great kids and managed to maintain a career.  I'm content.  I don't have a bucket list.  I would like to do more but if I got called home tomorrow it wouldn't be the end of my adventures but really just the start.

Past Member
Reply by Past Member, on Mon Aug 05, 2019 6:07 pm
Tickpol wrote:

I've had Crohn's since I was a teenager and this is my second ostomy.  I'll admit that having an ostomy is a lot more traumatic at 21 than it was at 59.  At the time having the body beautiful was a higher priority than it is now!  LOL

 

I'm happy to play the hand I'm dealt and like you I'm still working out the issues that come with having a short bowel.  Having Crohn's is like being tall, tall folks are much more aware of low bridges. LOL

 

Even though I'm comfortable in my latest configuration I would appreciate the convenience that comes with being "standard".  Picking clothes because of look rather than "fit".  Eating new foods without considering the timing and possible consequences.  Sleeping through the night or at least without suddenly waking up from a dream of having an equipment failure.  As a kid I would be in the water all day long in the summer.  I miss that when I think about it.

But missing and regretting are two different things.  I don't regret not be "normal".  I wouldn't know how to act anyway! LOL

I feel bad for the people who feel bad for me.  I don't feel bad for me.  I'll have my 21st surgery in a few weeks and that's not a detour in life but a somewhat expected maintenance.  It just is what it is.

Actually I think it's funnier how many people I know who struggle worse with aging than I do with my Crohn's.  They proudly hurt themselves trying to prove that  their body can still do  something for which its warrantee has expired.  I have no illusions or expectations of how my senior life will be.  I have earned my rest.  I have earned my right to smell the flowers.

My collection of scars laughs at their collection of running medals and worn out workout gloves.  I keep my shirt on not out of fear of embarrasing myself but rather to keep from offending the medical snowflakes.

I've lived a good life.  I've raised great kids and managed to maintain a career.  I'm content.  I don't have a bucket list.  I would like to do more but if I got called home tomorrow it wouldn't be the end of my adventures but really just the start.

Hi Tickpol!

I don't know you but your post made me drop to the floor rolling in laughter!  I will be 59 this year diagnois with crohn's at the age of 8 and I lost count of how many surgeries endured months in the hospital blood transfusions etc.!  I love your sense of humor and totally understand you!  My life today is my normal and I love it!   Thanks for the lift! 

Reply by annofsd, on Mon Aug 12, 2019 4:01 pm

What do I miss? My Mediterranean diet! I've learned to manage my output by taking an Imodium (loperamide) pill with every meal and not using butter or oil with my foods. I used to love foods prepared with olive oil, but now I eat them au naturel. :(

Reply by NancyAnn, on Mon Aug 12, 2019 4:42 pm

@annofsd, what about coconut oil? That is supposed to be healtier and I don't think it has any flavor but at least it woudn't be with out anything. Just a thought.

Reply by annofsd, on Mon Aug 12, 2019 4:55 pm

It's the oil that is the problem for me.

Reply by medic361, on Mon Aug 12, 2019 5:05 pm

There is nothing can’t do now that I could do before, I refuse to let my stoma control my life. 

Reply by Newbie Dana, on Mon Aug 12, 2019 7:21 pm

Let's see, I had to stop scuba diving when I developed vertigo, but that was 15 years before I got my stoma. I took up hiking and camping instead. I have some trouble hiking now because of neuropathy in my feet from the chemo, but that doesn't have anything to do with my stoma either. I cured my swimming problems by using an Aqua Seal over my appliance every time I change the wafer. I had to modify my excercise routine (no crunches or push-ups) because of my peristomal hernia, so I went back to bicycling instead. In point of fact, I think I have lost more activities to age than to my stoma - yay, 63, and still going!!! I just do what I can, modify what's difficult, and find something else to take the place of anything I can't. But isn't that what life is like as you get older, whether you have an ostomy or not?

As for diet, it took time, but I basically eat anything I want with little or no trouble. I think my colostomy is actually more forgiving than an illeostomy, but about the only thing I can't handle is popcorn (the little buggers swell up and cause a blockage), and I am careful about seeds where I used to eat more of them.

Reply by HenryM, on Mon Aug 12, 2019 7:51 pm

Bob:   Cutting out swimming is the primary activity I regret having to do.  In a social situation, particularly, I prefer avoiding the risk of a mishap or having to explain why I'm having to disappear suddenly into the bathroom for a half hour.  And, as you mentioned, contact sports is a no-no.  But I've been a runner all my life and the ostomy hasn't stopped me.  I avoid the heat of the day because I don't wish to sweat that much as it impacts the ostomy, plus it's just debilitating as I've gotten older.  I just go out first thing in the morning.  As far as food goes, the only thing I avoid now is melon, since it is too pulpy and my system doesn't digest it well.  No big deal and my wife gets to eat all the watermelon every summer.  

Reply by w30bob, on Wed Aug 14, 2019 11:52 pm

Hi Henry,

  Yeah, I forgot about melon.  I love fruit.  But being short gutted the whole glucose/sodium osmolarity thing constantly kicks my ass, so melon and most fruit are a no-no.  That's not to say I don't eat it.  I avoid things I'm not supposed to eat or drink until I get fed up with all this bullshit and say screw it...........and then I just eat or drink way more of it than any normal human would do and then just pay the consequences.  For me that's emptying my bag every 5 minutes or so until my intestines are empty and all the bad stuff is out and in the septic tank.  

  I'll let you in on a little secret, but don't tell anyone.  This would be where the Cone of Silence would come down from the ceiling and cover us, if this were a Maxwell Smart episode.  If you're going to be bad and eat melon here's a treat for you.  Freeze it.  Yeah, I know you're not supposed to freeze melon, but hear me out.  Cut up the melon like you normally do and put it in a plastic bowl or container.  Leave the lid off.  Put it in the freezer and forget about it.  Go enjoy your day.  The next day go outside and work up a good sweat.  When you come in take the frozen melon out of the freezer.  You'll need a butter knife or something similar to break the melon pieces off the frozen clump in the bowl, but chow down.  You'll find the texture very alien at first.  It's not solid like ice, nor mushy like a 7-11 Slushy.  I'm not sure how to describe it, but it's definitely different.  The closest thing I can compare it to is an overfrozen fudgesickle ice cream bar.  If it's been in the freezer for eons and you bit into it it has the same strange texture.  Anyway, after you eat a few pieces you may be tempted to stick it back in the freezer because your brain will be confused by the texture, but you'll come back in a minute or two for more.  It sort of grows on you.  And it's incredibly refreshing if it's warm outside. 

  The other way to do this is after it's frozen solid in the freezer take the container out and stick it in the refrigerator.  Here timing is everything.  You want to catch it before it thaws out, but after it's no longer frozen solid.  If it fully thaws out it will be a soggy mess.  But in between soggy and frozen it's a combination of ice crystals interwoven with cold melon.  And this stuff is addictive.  You'll look down and ask where all the melon went.....its that good.  This is the way I really prefer it.  If you let it thaw out too much, no problem, just stick it back in the freezer and try again.  After a few melons like this you'll wonder why no one ever does this in the first place.  And it works equally well for Honeydew or Cantelope.  Ok, all this talk about melon means I need to go cut one up and stick it in the freezer.  So............gotta go.  Remember, this is our little secret........don't tell anyone.

;O)

 

regards,

bob

Reply by Tickpol , on Thu Aug 15, 2019 9:41 am
Songbird16 wrote:
Tickpol wrote:

I've had Crohn's since I was a teenager and this is my second ostomy.  I'll admit that having an ostomy is a lot more traumatic at 21 than it was at 59.  At the time having the body beautiful was a higher priority than it is now!  LOL

 

I'm happy to play the hand I'm dealt and like you I'm still working out the issues that come with having a short bowel.  Having Crohn's is like being tall, tall folks are much more aware of low bridges. LOL

 

Even though I'm comfortable in my latest configuration I would appreciate the convenience that comes with being "standard".  Picking clothes because of look rather than "fit".  Eating new foods without considering the timing and possible consequences.  Sleeping through the night or at least without suddenly waking up from a dream of having an equipment failure.  As a kid I would be in the water all day long in the summer.  I miss that when I think about it.

But missing and regretting are two different things.  I don't regret not be "normal".  I wouldn't know how to act anyway! LOL

I feel bad for the people who feel bad for me.  I don't feel bad for me.  I'll have my 21st surgery in a few weeks and that's not a detour in life but a somewhat expected maintenance.  It just is what it is.

Actually I think it's funnier how many people I know who struggle worse with aging than I do with my Crohn's.  They proudly hurt themselves trying to prove that  their body can still do  something for which its warrantee has expired.  I have no illusions or expectations of how my senior life will be.  I have earned my rest.  I have earned my right to smell the flowers.

My collection of scars laughs at their collection of running medals and worn out workout gloves.  I keep my shirt on not out of fear of embarrasing myself but rather to keep from offending the medical snowflakes.

I've lived a good life.  I've raised great kids and managed to maintain a career.  I'm content.  I don't have a bucket list.  I would like to do more but if I got called home tomorrow it wouldn't be the end of my adventures but really just the start.

Hi Tickpol!

I don't know you but your post made me drop to the floor rolling in laughter!  I will be 59 this year diagnois with crohn's at the age of 8 and I lost count of how many surgeries endured months in the hospital blood transfusions etc.!  I love your sense of humor and totally understand you!  My life today is my normal and I love it!   Thanks for the lift! 


Thanks Songbird16!

Diagnosed at 8?  Wow you've got me beat by almost decade!  It was pretty medieval back then wasn't it? LOL

I probably should have been dead a long time ago but there always seemed to be a new procedure or drug just in the nick of time.  It's gotten so my cliff hangers look no more dangerous than Batman and Robin climbing up a wall! I have had a couple moments were you think to yourself "this is going to end badly" or "this is gonna hurt" but somehow the day comes when the storm clears, chores need to be done and bills need to be paid

 

I admire your travels.  I hope to travel more once my boys are out of college.  But there are chores to be done and bills to pay! LOL

 

Dave.

Reply by Immarsh, on Fri Aug 16, 2019 3:06 am

You dont' say   how long you have your surgery, and what your current situation is.   My name is marsha, and I have my ileostomy for more than 50 years, since I was a child of 15..   After 4 years of being sick with ulcerative colitis,  i wanted to enjoy all the things that I wasn't able to do during the years I was sick.   We were a Brooklyn Beach family, and spent most of each summer on the beach with cousins and friends.    I  was 16 when I returned to that world, and  although there were some changes,   I adapted.  We'd arrive at the beach early in the day,  by 10 am,   swim and  wait for my mother to come with lunch.   There was always an array of food choiced,, fruit and snacks,  and although I was more aware of what I ate,   I didn't worry about it.    I was wearing a ( old fashioned by todays standards)  rubber pouch,   metal locking ring, and a plastic wafer, which needed " cement" to glue it on.   VEry messy, and not always reliable.   But I learned to travel with supplies.     I also learned if I wanted to eat,  I had to make at least one or more trips to the bathroom, which at that time were stalls with no doors on it.   But I learned to empty, sitting and facing the wall..   Since those early days, I've spent long days, at the beach, have gone hiking and campiNg   ( emptied in the woods),    flew in a single engine plane ( no bathroom) many times, and have swam and snorkled my way around the world....  It's not always perfect, but I don't feel deprived...   If you have any questions, feel free to write.  best of luck.   Marsha

 

Reply by Silveradokid, on Sun Aug 18, 2019 9:03 am

All I have to do is recall writhing in pain on the floor or in the bathtub, not able to eat or drink anything and contemplating ending "it" permanently, and a heartfelt appreciation for modern medicine and my permanent ileostomy swells in my being. I can enjoy a meal at a restaurant, take a road trip or cruise, go to the movies, stroll or bike at the beach, all for the low, low price of emptying a bag. In the wake everything passed, I'll gladly take this new reality...   

Reply by w30bob, on Sun Aug 18, 2019 12:14 pm

Hi Guys,

  I realize from the responses that my question was a little misleading.........my bad.  The ostomy itself doesn't really doesn't affect one's ability to do too many things, except maybe tuck your shirt in or take punches to the abdomen.......it's the underlying reason for the ostomy that does the limiting.  The responses from Medic361 and Silverado make this blatently obvious.  And those reasons are all over the map, from something simple to being just one part of a treatment puzzle.  So really this question should have been "What caused you to get an ostomy, and what activities can you no longer do that you once could?".   But no sense splitting hairs, I suspect everyone already knows what I just said. 

later,

bob

Reply by vanessa1970, on Mon Aug 19, 2019 2:36 pm

I can.....sing, dance, have sex, enjoy my family, take long walks, swim, live without pain, not worry about where the bathroom is, make friends, kiss, hug, enjoy this great planet that we all live on.

Past Member
Reply by Past Member, on Mon Aug 19, 2019 4:47 pm
vanessa1970 wrote:

I can.....sing, dance, have sex, enjoy my family, take long walks, swim, live without pain, not worry about where the bathroom is, make friends, kiss, hug, enjoy this great planet that we all live on.



Vanessa, Thank you for your post and positive attitude! I do all of it and life has been wonderful to me too!

Reply by w30bob, on Mon Aug 19, 2019 8:18 pm

Hey hey.........Ladies.........no stealing the thread.  You weren't asked what you COULD do....you were asked what you COULD NOT do.  Keep it up and I'll have to seperate you two.  We'll have no more of this "singing" and "dancing" on here.  Ok........I'm laughing as I'm typing this........so go ahead and sing and dance!  Just no slam-dancing.......could get messy.  You gals have a great night!!

regards,

bob

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