different concern about telling people

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/5/2008 4:50 PM (GMT -6)   
Alright, i haven't told anyone that i have a bag, because i just dont know exactly how you would start that convo for one thing, but also because its not really something you share.  I look at it as i didn't tell people about my pooping before i had it, why tell them now?
Anyway though, a friend is going on vacation with us (woo hoo vacation, waterpark here i come!) and while i don't really for see any reason i would need to tell her, i am afraid she is going to be upset.  I also worry this about my other friends, i see them two or three times a week, and every friday night we have a grownup night, lol.  I am not worried they are going to be upset about the bag, just that they are gonna feel like i didnt' trust them to tell them.  That i thought they would be stupid acting if i told them.  Which partially i do worry a little that they would act weird around me, alot of times when people find out you have some kind of health issue, regardless of what it is, they sort of act a little differently around you.  But it's mainly because i just dont' think its that important, and i am kind of shy about stuff like that anyway.
So if i do have to tell them, how do i make them understand that the reason i didnt tell them had nothing to do with trusting them?  I know saying that is the easiest way, but i am afraid they won't believe that.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 8/5/2008 5:19 PM (GMT -6)   
I think it is more important that "we", the patient, are comfortable/accepting with our new bodies. I know I didn't tell friends for MANY YEARS what I went through...I would just say that I had my disease under control. It wasn't until I had my proctocolectomy that I realized that it isn't anything to worry about...friends are just happy that we are healthy and happy, not weather or not we told them about our surgeries. You'll let them know at some point (conversations sometimes go in certain directions), but don't feel obligated to tell them.

Enjoy the water park...I know I did the first time I went after my surgery(and didn't tell my friends), it was SO MUCH FUN!!!

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 8/5/2008 5:19 PM (GMT -6)   
if they're your friends it really isn't gonna be a big deal. all my closer friends know, but that's it. i don' think everyone needs to know, but anyways.

i wouldn't go on a mission to tell them though either, i think that makes it awkward. if it comes up, tell them, and if they're upset just say "oh sorry i thought everyone knew," that seems to work for me just fine. i've never been pressed beyond that, or on the subject. it'll come up at some point, you say you're bagging it and then they're onto the next topic. i'm sure most ppl i've told have since forgotten-even my cousins give me a whack in the stomach like they always do, but now i'm sure to swat their hands away lol. when it's friends you're telling it's no biggie!

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/5/2008 9:51 PM (GMT -6)   
i think i will wait till they are all drunk they won't remember anyway, lol.
What i have told people so far is that i had stomach surgery and had some of my intestines taken out and some repaired, which is all true, just not the complete story.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 550
   Posted 8/5/2008 11:18 PM (GMT -6)   
When you tell them (if you tell them) then you can always say that for the sake of sanity, you needed to go through this alone. YOU needed to come to terms with this before you were able to let others know about it. We all know that this is a huge change in your lives and a very big adjustment. You can always let them know that YOU needed to realize that you are the same person (just rearranged a bit). 
 
If all else fails, I like the getting drunk part! tongue
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 8/6/2008 7:17 AM (GMT -6)   
My rule of thumb has always been not to tell anyone of my altered plumbing unless the conversation rolls around GI diseases or chronic illnesses and sharing my story would help. Frankly I just don't think it's anyone's business. You can have best friends but it doesn't mean they have to know everything about you. Likewise remember that best friends are withholding information from you regarding their lives. Don't feel guilty!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/6/2008 10:39 AM (GMT -6)   
like i said the only reason i think i may need to tell them is with one friend we will be going on a trip next year and staying together in a room. I just don't see how i could hide it then. And i would hate to wait till we get there and just spring it on her, you know? And with the others, one of their parents has a house in the mountains and i was invited to go, not sure i am going to be able to go this time, but they go alot and i want to go with them when i can. And i think it might be hard to hide staying in the same house with people, esp since i would have to share a bed with someone. (not in THAT way though, lol)
I think the drunk way is the best, for sure, they are drunk a lot, lol.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 8/6/2008 12:04 PM (GMT -6)   
I still don't understand why sharing a room with someone would necessitate telling them? I have shared rooms with many women since surgery and the only thing I tell them is that I prefer the bed closest to the bathroom because I use it frequently. No one has ever challenged me or pushed the issue. You might be sharing a bedroom with friends but it doesn't mean they will see you naked or that they will use the bathroom while you are in it. If you want to tell your friends because you want them to know, that's one thing. But to feel you have to tell them because you are sharing a room or a cabin, it's not necessary. Just my 2 cents.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Firthy
Regular Member


Date Joined Mar 2007
Total Posts : 33
   Posted 8/6/2008 12:40 PM (GMT -6)   
Ahh i know exactly how you feel.. But there your friends and should be there for you =) You only have to tell people you want to tell, most people dont know what it is and will be too embarrassed to ask questions...

Im 18 and i have an ileostomy due to UC =(.. and this year i went to Magaluf in Spain with 8 other lads and it was a blast.. Some of them knew what it was and why i had it because of some of there relatives had the same.. but some of the lads didnt and just asked why i had it.. I also shared a room with 3 of the lads.. there were 4 of us in each room.. and they were really cool about me needing to use the bathroom to change the bag etc..

They like to make jokes when a really nasty smell comes because someones passed wind.. they blame it on me lol.. But i find it funny and have a joke with them..

I still went clubbing and swimming and everything else.. I wont let a silly little bag ruin my holiday!

Go and enjoy yourself =D !!

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 8/6/2008 2:36 PM (GMT -6)   

Well I think I can understand where your concerns are coming from.  I think though, that you are worrying that it will turn out bad, which is probably not the case.  I can completely understand that you feel giving advanced warning to someone you are going to be in close proximity to for an extended period of time will prevent an awkward moment from happening if/when something causes your ostomy to be "discovered", like a leak, noises, seeing your supplies or whatever.  I can also see you feeling like if you single out just the friend or friends that you are going on the trip with that they will in turn tell the others who will be confused why you trusted one but not all.  The part I don't think will happen is by telling them now that they will feel like you didn't trust them.  To me it is like sharing info about a case of diarrhea, need to know basis only, but this might be one of those times.

You said that you all go out a few times a week so I would guess that during these times the conversation does open up to some more personal conversations, i.e. relationship details and such.  As far as the conversation starter, it seems you have already opened that door by telling them about your stomach surgery so all you would have to do is elaborate on that.  Like others have mentioned, if you are worried about their confusion of why you didn't tell them earlier or why you are telling them now, explain that you needed time to adjust before you could bring it to them and with all of the group functions you are planning on doing together you thought it best that they know to prevent an awkward situation, i.e. someone walking in at the wrong time or whatnot.  You will know when the timing is right when you are all together so I wouldn't push it none.  Just wait until you feel they are in a state where they can understand the information.  Just my take on it, hope it helps.

John


Total Colectomy with End Ileostomy May 27th, 2008


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 8/6/2008 4:27 PM (GMT -6)   
well i see that u got a lot of responses and i havent read them all but here's my opinion

most people (including us before we got them) think they ileostomies are waaaaaay worst than they turn out to be. So I honestly don't think a good friend would take it that badly, because if they were to put urself in ur shoes with just the "general misconception" of what a bag is. They probably wouldnt broadcast it either. R u telling just b/c u want to? the other friends i mean....who arent going on the trip?

*note that even tho i said that, i havent told any of my friends except my best guy friend. But i still wont go away with him b/c i dont want him to see how i sleep with it...u know...it filling up and stuff while im asleep. But yea, i dont tell b/c i know myself, and i know if i tell i will constantly feel self concious, like someone is looking at it ( i almost do now) if they say nice dress i'll be thinking...I KNOW I SHOULDNT HAVE TOLD! THEY CAN SEE IT! LOL
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 8/6/2008 6:49 PM (GMT -6)   
My question is, if they are your friends, wouldn't they know anyway??? I mean, most of my firiends know how sick i was, and know i ended up having surgery. So for the most part they know what happened. It's not like it's a topic of conversation everytime i hang out with friends, but they DO know one way or another. I guess what i'm saying is if they are your friends and they know your were sick and had surgery, wouldn't they be able to put two and two together and come up with BAG??

Most of my firiends know, and probably most of my co-workers. I DO actually joke about it once in a while, so maybe some of them get the hint. Someone broke wind once, and everyone could smell it and of course asked who it was. My response was " Ummm, impossible". A few in the room knew what i meant.
Bagged in Aug '06
@ssless since Nov '07
" Love that dirty water...Boston you're my home"


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/6/2008 8:20 PM (GMT -6)   

I was the Receptionist at a 2,000 member church during the years that I was sick and when I had my surgery, so EVERYONE knew about my ostomy, since I was on the prayer chain. People were very supportive and happy that I was doing so well after surgery, since they had seen me so sick before.

Now, I'm at a new job (at a church again), and nobody knows about my ostomy. I have told them that I used to be very sick with Crohn's, that I had surgery, and now I'm not sick anymore. Nobody has asked any questions, so I left it at that. I'm sure the time will come when I will tell someone, but it just hasn't happened yet. I'm not embarrassed by it, I just don't see the point in talking poo with people so soon after meeting them! :)

If you're not ready to tell people, then don't. I've spent many weekends at my sister's house, and her children don't know about my ostomy. It's possible to keep it to yourself, since you go to the bathroom alone. You'll know when the time is right and who you feel comfortable telling, especially after a pitcher of beer!

Have fun at the water park! I'm going to one on Saturday! yeah woo hoo!!


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/6/2008 10:38 PM (GMT -6)   
the reason i think they would know when we share a room or in some cases a bed (again not in a dirty way,lol) is because you know when you wake up that thing is pretty full! and there is noway you dont' notice that!
We have been friends for a long time, but fell out of touch for years, and i didnt' catch back up with them, except for one who i have never met in person, the one who is going to the beach with me, oh for pity sakes i am using names!
manda is going to the beach with me, and to atlanta next year we will be sharing a room then. I have never met her IRL.
My other friends, i hadn't seen in years, and then saw them at my class reunion, and Andy and i kept in touch, and then that turned into a whole group that i went to school with and worked with being together. So they werent' around me when i was sick, actually noone was around me when i was sick, lol.

John, are convos are very personal, actually other than this, i will tell anybody anything, you name it, stuff i really shouldn't if you get my drift! and they do discuss their bathroom habits, the other day one of the girls sent me a text saying she was on her way, runnign late cause she had to poo! i said, i could have gone my whole life without knowing that. She was like, why it's true.

I am just a worrier, if i have nothign to worry about i am upset.

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 8/8/2008 1:25 PM (GMT -6)   
my question is how do you swim with the bag? as a girl i guess a one piece would cover everything, but if it fills up with gas that's awkward. but what about guys? do you just wear your swim trunks higher?

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 8/9/2008 8:15 AM (GMT -6)   
Summer, I would just wear a big t-shirt and pajama pants and use the bathroom before everyone gets up. That's what I do when I stay over at my sister's house.
 
SpongeBabe (great name!), since I live in Florida, I wear bathing suits almost year-round. One of the suits I have is a one piece with a skirt that has two layers. It looks like a little black dress with a halter top. The under layer is the bathing suit part and the top layer is the dress. The combination of the two layers completely hides the bag, even if it puffs up a little. I also have a suit that's a tankini top with a skirt. It also hides the bag and allows me to show a little bit of my stomach. If you shop around, you'll find some cute suits that show a lot of skin and hide the bag, too. :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 16, 2017 5:38 PM (GMT -6)
There are a total of 2,856,241 posts in 313,382 threads.
View Active Threads


Who's Online
This forum has 155040 registered members. Please welcome our newest member, Sandyw8.
477 Guest(s), 15 Registered Member(s) are currently online.  Details
eyeshurt, Jakester, cue005, PeterDisAbelard., Hanana, Flow2118, AmyAzz, ChristopherMR, Girlie, Denver1, Sheeks175, InTheShop, Blu's Mama, Tall Allen, straydog


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer