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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.

Reply by Songbird16, 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.

Reply by Songbird16, 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. Sad

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.

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