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Things you can do with an ostomy

I had a busy day yesterday:

I ran a 5k race with my daughter in the morning
Went to the town pool with my 3 kids, swimming, diving, etc
Installed 2 light fixtures for my mother, up and down a ladder.
Went to a minor league baseball game at night with my daughter

Just wanted to post this for anyone researching about life with an ostomy. I never could have done so much in one day when I was sick with Crohn's. Instead of limiting me, my ostomy has opened life up for me.
 

Nyx

Moderator
Bravo Joe!! Mine has too...I started school today and would never have gotten through the day pre-ostomy (not without alot of worry anyway).

Way to go!!!
 
Great thread Joe!!!
Ostomy gave me my life back. Now when I have it I realize how bad it was. I smile again.. as much as possible. I drink wine... as often as reasonable. I go out with my wife and see my friends and family. I attend to my business. I dont feel tired.
Very happy.
@ Cindy - glad your first day went well. Did Oscar behave? lol
 

Nyx

Moderator
lol@Sharon...when I first read the title of the thread I thought it was going to be about 'stupid stoma tricks'....lol Like mine can roll over and play dead....lol
 
At the baseball game, my daughter wanted a big bag of popcorn. On the way back to our seats I was thinking, I'm not gonna eat that. But I could not resist. And, I live to tell the tale.
 
Things I was able to do with my ileostomy:

go on a cruise to the Bahamas

date and get married (will be happily married 13 ys. Oct. 10!!)

volunteer for the local CCFA chapter & counsel others considering ostomy surgery (I still do!!)

Was president for 15+ yrs. of the local ostomy support chapter and am now a visitor liason

Babysit my niece & nephew when they were small before they moved to Syracuse

I couldn't have done all of these things before as I was very ill due to my Crohn's taking over my entire large colon and part of my small intestines. I was in so much pain, I lost weight from not eating.

I define myself. My ostomy DOES NOT DEFINE ME.

IF PEOPLE CAN NOT ACCEPT ME FOR WHO I AM, THEN THEY WERE NEVER MY FRIENDS TO BEGIN WITH.

Love me, love my ostomy. :biggrin:
 
Two weeks ago I went to Carlsbad Caverns in Carlsbad NM (I live in Albuquerque). I have been there before, but I have never had an experience like that and not spent most of my time wondering where the bathroom was and worrying about my stomach. Also, I had the energy to stay in the caverns for three hours of walking. I kept thinking, “so this is what vacations are like for people who don’t have Crohns.” It was magical, and it was all thanks to my stoma.

I have been able to eat whatever I want with no pain. I drink milk! I eat almonds! Coffee doesn’t hit my gut like acid! I feel like I have super powers.
I am getting mine reversed soon, but I am so thankful for what it has allowed me in the last five months and I am so grateful to know that if I ever need to have a bag again, it is not the end of my life but a new beginning.
 

merrywidow

mum with a dogdy tum
lol@Sharon...when I first read the title of the thread I thought it was going to be about 'stupid stoma tricks'....lol Like mine can roll over and play dead....lol
how do you know oscar is playing dead and not really dead? do you flick him with your finger or something?


back on topic.... i suppose in a real emergency you could use a pouch as a life saving device. blow it up with air...... shall i just shut up?
 
Sure, last week I was scuba diving and ran out of air. Luckily I had my pouch and was able to breath using the pouch for air.



Of cource this is a totally farcical post. Lest anyone think that this was a real post.:)
 
hey CDdad, you can use the bag as a floatation device. Be sure to paint it with a florescent color like bright yellow or orange.

Float on your back with your bag filled up with air. That way if you ever are in distress, they can locate you by your bag. lol (just kidding) :lol2:
 
I knew having an ostomy would come in handy one day. I'll have to see if Hollister offers my pouch in bright yellow. :)
 
i swam yesterday in the ocean and had great time. thanks to Semi;s suggestion, I used the medical glue from hollister and my flange did not move. it was wonderful.

I tried MerryWidows's suggestion to use the bag as a floating device ....
 
What did you wear on top Dan? Tee-shirt, Rash guard? Or are you one of the brave souls who go without a shirt?

I'm glad to hear the beach worked out so well!
 
did not have to wear a shirt. my stoma is low enough so as long as I dont wear 'low riders' only very little of my flange shows up (the upper part of the flage tape, maybe 1/2 inch).
the filter on the convatec is worthless, no matter what I try. the first time I went into the water without the Hollister medical adhesive, the flange started to peel off. .. than I put the glue and its no moving no matter what. I will change it today and see how it comes off. I can get easy 4-5 days from both flange and bag.
 
I used to swim, walk eat what I wanted, care for my toddler, decorate the house......you name it I could do it with my ostomy........alas those days are gone...........oh well, suppose I could always have it put back on again lol


Ruth
 
I went swimming with mine a few weeks ago and everything went great! I think the key for me was using water proof medical tape all around the flange to keep its edges dry and help secure it. I use tape every day (ironically I ran out today and had to go without) and it helps so much.

I have also gone hiking and to the lake to dip my feet without the fear of needing a restroom ASAP.

Not having to deal with the urgency that comes with Crohns (such a terrible feeling) and not having the “I’m going to poo myself in public” feeling are the two things I’m going to miss most about my stoma.
 
Hi Ruth and welcome. Maybe you'll be back in the club one day.

Dan - that is great, I'm glad the glue is working for you. I await your story about getting it off.

Jers Girl, I love not having the urgency too. Sometimes, especially in a nervous situation, I think for a minute that I should be having that urgency, but it quickly passes.

All in all, it's not so bad. Here are some slightly negative things that happened last weekend. I was in the park with my 2 year old and 8 year old. Pouch was getting full and creating quite a bulge in my shirt. The bathroom was 1/4 mile away and I did not feel like going there with the kids. So I went home.

Also, I was in the mall with my 8yr old and her friend. Same thing started happening. again, did not want to round them up and head for the bathroom, so headed home.

Usually I am more regular than that, but it was a pain in the bag (ha). First time it made me change my plans. But we are talking minor stuff here.
 
Hi Ruth and welcome to our friendly forum. We will always be happy to re admit you in our ostomy club, just say the word (lol)

Joe - it was not too terrible to take the flange off with the Hollister glue. It took two more adhesive removers to get it off and the skin underneath was somewhat irritated but no big deal. This thing was totally secured while I was in the water for over an hour. Sorry to hear about the mishaps - was there any way you could empty the pouch before you went out with the girls? (Maybe you did?)

One needs to wear gloves (as Semi thought us) otherwise this glue is a pain to get off.
I love my setup with Convatec and can keep the flange for 5 days and maybe more but I get nervous.

Jer's - I am counting the days to your reversal - very exciting. I am sure it is unnerving as it gets closer so I am Sending you a big hug.

Yes, we are all having some mishaps once in a while. My bulge is in my pants since my stoma is low so I guess it does not look too obvious, especially if I wear black slacks.
Before the surgery I found a million reasons why not to do things now I dont say no. Still dealing with lingering UTI from the Foley.
 

ameslouise

Moderator
I am bumping this thread up to the top, and adding my "things I can't wait to do with my ileostomy":

I can't wait to go on a three hour bike ride with my family!
 
Things I can do with my ileostomy: Join a local ostomy support group and help others who are facing ostomy surgery due to IBD, birth defects, or colon cancer.

Our president (my BFF that I met at an ostomy meeting 20 yrs. ago ) and I are going to ask the local Red Cross if they are able to accept medical supplies, mainly ostomy products for the people of Japan seeing as there is a desperate need for so many things. It was brought up at our meeting on Monday that the members really wanted to help out by giving supplies that they no longer needed as well as surgical tape, gauze, saline solution, alcohol wipes, surgical gloves,etc. because having an ileostomy, colostomy, or urostomy isn't just in the states....it's world wide. I really hope that the Red Cross says yes.
 

vickyoddsocks

wears odd socks
Really silly question from a 'gonna be new ostomate'.....
Can you go on rollercoasters and rides and stuff? Or is there the risk of leakage?
I'm also a very keen horse rider (well i was years ago when i had the strength to do it!) and its something i would love to reward myself with when im better, do you think that is going to be ok with an ileostomy, or would all the bouncing around be too much?
Hmmmmmm, so many questions :(
 
Vicki - You are going to be fine. It takes few months to get totally comfortable with the pouch until you get it down to really not thinking about it.
I went on roller costers 3 months after my syrgery and had no issues. Same goes for flying and I am sure horseback will also be fine. You will learn how to manage your bag so it does not fly around. There are many ways to control that.
You can ask ANY question and you can PM me and I will be happy to respond.
 

Terriernut

Moderator
Vicky, as a new ostomite (better than marmite) I am pretty darn sure I can do anything I damn well please with this bag...except have sex with Johnny Depp! (he's taken after all)

I AM going horseback riding this summer. I AM going to do whatever I damn well please for a frikkin change! The only thing this bag is going to limit me with...is going to the toilet every 5 minutes!

Go for it!
Misty
(the cool bag lady)
 
Vicky, I was 17 when I got my bag. I received it on 4/7/86. I graduated from high school on 6/18/86. For my graduation gift my folks took me to Cedar Point in July and YES I rode all of the rollercoasters and had an awesome time!!! No pain, no running to the bathroom at all. Eating whatever I wanted and just enjoying life.

Of course, I made sure it was ok with the surgeon before I left on my vacation if I could go on the rides and he gave me his blessing to "get out there and have a great time. You deserve it after everything you've been through".
 
Roll on 1.15pm tomorrow- I get my life back, with the added bonus of a bag! It's comforting to hear the 'good' stories and sides to having an ostomy.

As Misty would say- now I need to go and buy some matching shoes for my new bag!!!
 
I'll just thow in this tidbit, about 2.5 months after my surgery, I was at a water park with my 8yr old daughter. I was not feeling really confident, but I could not miss it! I went on all the water rides, slides, wave pool, etc.

So as Dan (acq) says above - no limitations!
 
I just had a nice 10k race yesterday, I thought I would add here.
It was a great early spring day here in NJ, and I had been training hard for this race and for a half marathon next month.

So yesterday I ran hard and did well. I ended up 142 out of about 500. In my previous 10k from last November, I was 520 out of about 700.

So, I'm improving and this ostomy has given me my health back to let me train like this.
One thing I love about running is I have never had an ostomy equipment failure while running. It just seems to be one time when I don't have to think about it at all.

Experience has taught me to be prepared so I did bring a spare pouch and disposal bag with me. I did not feel like waiting in line for the porta potty, so I headed into the woods to do a quick pouch change right before the race. Quick and easy!
 
HA, great (and disgusting) picture Dan. Now that is determination - let's hope he won the race.

I have not gone camping since i was a kid, but I know someone here has gone recently.
 

Nyx

Moderator
I was camping last summer and had no problems whatsoever :) Have plans for 2 camping trips this summer so far...can't wait for this damn snow to go away!!
 

ameslouise

Moderator
I think camping with an ostomy would be great! So much easier than having to squat and wipe yourself with a leaf!

That is, if you're the camping type. Camping to me is anything less than a Hampton Inn. NOT the outdoors type!!!!

PS Joe -are you in North or South Jersey?
 
I would camp if.... I had access to hair straightners, air con, a double bed with egyptian cotton sheets, and a nice spa. Do they do such sites?
 

Nyx

Moderator
They don't do sites like that, but you can get a pretty fancy RV to camp in...that's what we do :) I don't sleep on the ground either...I'd never be able to get back up...lol
 
Does anyone here wear an ostomy binder? I was recently playing volleyball and my ostomy prolapsed. I was wearing a phoenix binder, but I suppose it wasn't enough support?
Can you suggest another product that might help me be more active without worrying about prolapse again?

Thanks!! - Amy
 

Terriernut

Moderator
I would camp if.... I had access to hair straightners, air con, a double bed with egyptian cotton sheets, and a nice spa. Do they do such sites?
The ONLY WAY to do Glastonbury my darlin...in an RV!!!! Or any other camping for that matter.
Misty
(who is too bony for sleeping on the ground!!)
 

ameslouise

Moderator
Things you can do with an ostomy.... SLEEP 8 HOURS....IN A ROW!!!!!!

My parents had to come wake me up this morning to take my meds... it was a long, glorious sleep!
 

Terriernut

Moderator
Amen to that! Sleep, eat, live life like normal!!!! Had a stomach bug going around 2 weeks ago, work friend up all night...me...sleep like a baby. Emptied my bag once. Hhahhahhaaaahhhaaa!!!!!

She was a wreck...Me...not!!!

Misty
 
My wife had a good point. Being an ostimate makes it much easier to leave a flaming bag of poo on someone's doorstep.
 
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