This really bothers me

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Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 1/31/2010 12:03 AM (GMT -6)   
So I am all dressed up nice and at a party visiting with people this evening. Suddenly Bubbles (my ileostomy) starts to wiggle and spout. There isn't noise (thanks goodness) but it is the yuckiess feeling. The pouch is filling, sometimes you can feel the warmth stuff, sometimes the pouch feels heavier. The whole thing is distracting and annoying. I feel so insecure about what I wear and the bulge that is ever growing until I have to escape to the bathroom.

So then I think, would I rather be running to the bathroom all the time like before and not making it quite often?

No, I just have to get used to this whole new life..
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/31/2010 12:26 AM (GMT -6)   
sometimest it is annoying but hey it is better than running to poop!
when you wear a dres wear abelly band over your pouch, it will help alot also take gasx and immodium first thats what i always do if i am gonna go dancing or something
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


damagedgoods41
Regular Member


Date Joined Sep 2009
Total Posts : 377
   Posted 1/31/2010 1:45 AM (GMT -6)   
Hello Summerstorm,
 
Hello i would like to start by saying that ur not alone with the way that you feel or are feeling in regard's to ur ileostomy.
I have had my ileo for nearly 10yrs now and still cant get used to or even accept this thing hanging off my stomach and the way i feel will never change because if i were going to accept it i would have by now surely???? I also hate the same thing's that you have described to others in ur post. So id just like to reinforce to you that it takes some people a short time to accept or maybe a long time like me and dont think i ever will. It probarly seems crazy to you and others but that is how i feel.
sincerley,
 
beverley.....scool scool scool scool
Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
Strive to be a success but rather to be of value!!!!!!!
 
Dont count the day's,make the day's count!!!!!!
 
No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    Equestrian Mom
    Veteran Member


    Date Joined Mar 2008
    Total Posts : 3115
       Posted 1/31/2010 7:43 AM (GMT -6)   
    Trigirl~hang in there...you haven't made it through the first year yet! Everyone is different in their grieving process and it sounds like you are still working through it.

    I am sure it helps to get it down in writing...so keep it up! We will help anyway we can:)

    summerstorm
    Veteran Member


    Date Joined Aug 2006
    Total Posts : 6571
       Posted 1/31/2010 11:15 AM (GMT -6)   
    damgaedgoods-i think you might have mean that reply for trigirl, i dont really have alot of issues with mine. Is it my fav thing in the world, not so much, have i accepted it, yes! Andthere isnt much about it that bothers me
    UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
    -I have gone to find myself, if i get back before i return, keep me here-


    Allison77
    Regular Member


    Date Joined Feb 2005
    Total Posts : 421
       Posted 1/31/2010 1:36 PM (GMT -6)   
    Trigirl, I have a colostomy and though my output is formed, Oscar still gives me the occasional bubble and wiggle. As you said, I would rather deal with this then deal with not making it to the washroom!! Very well said.
    Damagedgoods, Im concerned for you and your feelings on your ostomy. Perhaps getting some counselling would help? After everything we as ostomates have been through, you shouldn't be down on something that has quite possibly saved your life. I have had body issues my entire life, some would even go as far as to say I had a distorted body image, always thinking I needed to lose weight even though I was perfectly acceptable. Now that I have Oscar, I have had to re-evaluate my image and realized I am NOW PERFECT. I didn't need to lose weight or get a chin tuck or Botox or a boob lift, I just needed Oscar to make me feel normal again. And that is what he has done. I sincerely hope you learn to accept your ileo.
     
    -Allie
    -Allison
    RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
     
    "The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


    RobinByrd
    Veteran Member


    Date Joined Dec 2008
    Total Posts : 511
       Posted 1/31/2010 2:22 PM (GMT -6)   
    You know, Bubbles and Penelope (my stoma) would be great friends  wink  she likes to be a part of the party almost always...so I take control and use Immodium (or the Equate version actually) and it works great!
     
    I was stupid a couple weeks ago and didn't take any before my night classes and b/c I had a busy day I didn't eat like I should have and so when I did finally have dinner (between classes) Penelope make all kinds noise!  I hate it when my tummy toots b/c most of the people in my classes do not know of her.  So, I'm having to make more conscious decisions regarding my meals, snacks, etc. on school nights. 
     
    Anyway, sorry that was windy...but I agree with Summerstorm...Immodium is definitely the way to go! 
     
    smurf 
    : )  Robin
     
    29 year old Mommy of an amazing 1 year old and Wife for 2 years!
    Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
     
    Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
     
    "Your mind is like a parachute, it only works when it is open."  -Unknown


    Trigirl
    Veteran Member


    Date Joined Jan 2006
    Total Posts : 768
       Posted 1/31/2010 6:03 PM (GMT -6)   
    So what exactly does the immodium do, when I have an ileostomy?

    Summer-Bubbles runs all day. Would it make it empty for a while? Would it mess up what is left of small intestine? I think I like runny rather than globby (is that an understandable word?) thick.

    Beverly-wow ten years is a long time. I hope I get used to things. I remember reading churchlady? say she hardly notices it there. I want to get there.

    Robin- I would just say have a noisy stomach and leave it at that. Nobody ever blink an eye about that noise.

    Allison77- your comments were something I needed to hear. I can't believe at my age (54) I'm still having issues with body image. The pouch really doesn't help it at all. Hope I can honestly feel that way some day.
    This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
    H.W. Longfellow
    Thyroid cancer removed 1988
    Stomach problems finally figured out 2001 Crohn's/Colitus
    Tried every drug without much success
    Colon/rectal cancer removed Aug 2009
    Trying

    Post Edited (Trigirl) : 1/31/2010 5:12:52 PM (GMT-7)


    summerstorm
    Veteran Member


    Date Joined Aug 2006
    Total Posts : 6571
       Posted 1/31/2010 6:03 PM (GMT -6)   
    oh and dont let yourself get hungry! that makes its noiser too
    UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
    -I have gone to find myself, if i get back before i return, keep me here-


    RobinByrd
    Veteran Member


    Date Joined Dec 2008
    Total Posts : 511
       Posted 1/31/2010 6:15 PM (GMT -6)   

    I agree...getting hungry makes things worse!  However, the Immodium just slows things down a bit and it won't hurt you at all.  If I've gone awhile without eating and then eat just before I'm around others then my tummy makes TONS of noises and most of it goes straight out in the form of tummy toots...so Immodium is my best friend.  I would recommend trying a small dose while at home to see how your body reacts to it.  I take two of the equate brand anti-D and it helps me out for about 4 or more hours.  LOVE IT!

     

    smurf
    : )  Robin
     
    29 year old Mommy of an amazing 2 year old and Wife for 3 years!
    Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
     
    Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
     
    "Your mind is like a parachute, it only works when it is open."  -Unknown


    lasbutterfly
    Regular Member


    Date Joined Nov 2007
    Total Posts : 281
       Posted 1/31/2010 6:36 PM (GMT -6)   
    Trigirl, I am going thru the same feelings as you, but in a little bit different way. I had ileostomy surgery in May 2009, and it didn't begin working so I had emergency surgery in June 2009. I have a tube coming out of my abdomen leading downward to a bag velcroed to my leg. My small intestines were severely messed up and are now almost healed.

    I have really had a tough time with body image. I feel like my abdomen is mangled from surgery, and cannot wear most of my clothing. I work in an office, but have worn sweatpants with blouses all fall and winter. Or a long skirt. I cannot have any slacks, because they pull on my tube. My skirts have to be longer, because my bag goes to my knee.

    I can possibly have surgery in June. I am trying to read everything that I can about BCIR surgery. It is an internal pouch, and I'm waiting to hear if I can be a candidate for it or not. I have gone thru everything that you're feeling. My bag blows up and makes noises, too. My bag REALLY blows up. It is bigger than an ileostomy bag, too, and is noticed whatever I wear. This is why I have been looking into alternatives to the conventional brooke ileostomy. I pray that I will be able to have BCIR. Maybe, you are a good candidate, too?

    butterfly

    Trigirl
    Veteran Member


    Date Joined Jan 2006
    Total Posts : 768
       Posted 1/31/2010 7:18 PM (GMT -6)   
    Really?! I sure haven't figured out this calorie thing. How do you keep stomach full not eating too much fibre and no high calorie or too may carbohydrates? Lots of water?
    This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
    H.W. Longfellow
    Thyroid cancer removed 1988
    Stomach problems finally figured out 2001 Crohn's/Colitus
    Tried every drug without much success
    Colon/rectal cancer removed Aug 2009
    Trying


    Equestrian Mom
    Veteran Member


    Date Joined Mar 2008
    Total Posts : 3115
       Posted 1/31/2010 7:35 PM (GMT -6)   
    Trigirl~you are several months post op right? Do you eat fiber or take a supplement?

    I have been eating low glycemic (and taken it a step further to low GI load) and eat basically what I want (except those darn starches) and I am full all day long...I eased into it slowly to see how my body responded (a few months) and I really wish I had gotten into this 10+ years ago when I had my first temp ileo:)

    It's not for everyone and I have learned to discipline myself, but I feel so much BETTER and I don't have to take fiber supplements or imodium anymore...and the best part is I rarely have noise (even when I drink beer!)...and believe me I've had many times when I wasn't eating/or eating at specific times and have been embarrased by LOUD noises:(

    Post Edited (OHIO76) : 1/31/2010 6:38:25 PM (GMT-7)


    damagedgoods41
    Regular Member


    Date Joined Sep 2009
    Total Posts : 377
       Posted 1/31/2010 7:51 PM (GMT -6)   
    Hello Trigirl,
    Sorry my post was for you as i got the names mixed up sorry about that. I would like to explaine to you and others on this forum the reasons why i dont except my ileo!!! To me i think the main reason why i dont or cant except it is because i have had 2 relationships in 10 years and both of them were very cruel to me,as in the first bloke was a nurse and told me it was not an issue for him,then when thing's started to become intimate after a long while he told me it was disgusting and i was also disgusting and walked away from me with no other explanation,so after that i started to doubt everything. I also have terrible body image as ive also had a radical hysterectomy when i was 27 for chronic edometriosis then i lost my bowel and in turn recieved an aotonic bladder and ended up with a supra-pubic cathetar for 12mths and had to many infections so they changed it to an indwelling cathetar which was 10 times worse for me so i really had two bag's and it was a nightmare. Then after i lost my bowel 3 years later i lost both breasts after having a bi-lateral mastectomy and had a heart attack on the op table and ended up in coronary care for several weeks and while i was in there i contracted golden staph,MRSA which completely ate meaway and i had giant holes where my breasts once were and now have big holes and crator's all over my chest!! I had the mrsa for nearly 11 months and had picc lines for venus access and that to was a nightmare for me. Then last year in March i had another op for a very large parastomal hernia and id been home for about 4 day's and ended up with another huge abcess and golden staph again. So another op which also went wrong and ended up with another infection and peritonisis which nearly killed me so again back in for more surgery and home with a drain tube coming out the side of my stoma!! I also forgot to mention the other guy that i went out with but was so uncomfortable about becoming intimate i ran and never went back then i found out that he had taken a picture of me out of my purse when i was seeing him and he took it down to the local pokie venue and put it on the wall for all to see and pinned a platic bag to it and wrote HIS ***** HAS A BAG SO DONT GO NEAR HER!!!! Well that just broke my heart and have never been the same since and this is why i cant except my ileo as yes it's saved my life but it has also caused me terrible grief also. I truly hope and pray that one day i can start to ecxept this as it is a part of me. Thankyou for listening. Sorry it was a long post but i needed to get some thing's of my plate.
     
    Sincerley,
     
    damagedgoods.......shakehead sad shakehead sad
    Permanent ileostomy,radical hysterectomy & bi-lateral ophrectomy,bi-lateral mastectomy,atonic bladder.
    DX chronic depression,bi-polarr11,panic disorder & o.c.d.!!!
    Currently taking Avanza 30mg,Abilify 20mg,Seroquel 200mgs,Asprin,Valium 5mgs & Sandrena HRT gel 1.0mgs
    Strive to be a success but rather to be of value!!!!!!!
     
    Dont count the day's,make the day's count!!!!!!
     
    No more revenge now;I will think upon revenge!!!!
  • I dont knowthe key to success,but the key to failure

    is trying to please everybody!!!!!!!!!!!

    Life becomes harder for us, when we live life for others!!!

    Without music, life would be a mistake!!!!!!!!!

    Im not young enough to know everything!!!!!!!!

     

     
     
     
     
     
     
     


    Trigirl
    Veteran Member


    Date Joined Jan 2006
    Total Posts : 768
       Posted 1/31/2010 8:17 PM (GMT -6)   
    DG, Glad you would take the time and energy to share. Those are quite the experiences. It's kind of scary all the mean people there are in the world. Luckily, there are nice ones too. I hope you find one of them next. Not sure I'll ever look at my challenge the same again.

    Sounds like a pretty bad hospital to get all those infections there.

    I know my attitude about all this is important. I'm trying to be proud of who I am what I have overcome and make this journey worth the struggles.

    Good luck in the BCRI stuff. I couldn't have any of that because they made my ileostomy irreversible.
    This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
    H.W. Longfellow
    Thyroid cancer removed 1988
    Stomach problems finally figured out 2001 Crohn's/Colitus
    Tried every drug without much success
    Colon/rectal cancer removed Aug 2009
    Trying


    summerstorm
    Veteran Member


    Date Joined Aug 2006
    Total Posts : 6571
       Posted 1/31/2010 10:00 PM (GMT -6)   
    a BCIR, i think can be done even with a perm ileo.
    But as for staying full, just eat less but more often.
    Like eat 4 or 5 times a day.
    UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
    -I have gone to find myself, if i get back before i return, keep me here-


    summerstorm
    Veteran Member


    Date Joined Aug 2006
    Total Posts : 6571
       Posted 1/31/2010 10:00 PM (GMT -6)   
    a BCIR, i think can be done even with a perm ileo.
    But as for staying full, just eat less but more often.
    Like eat 4 or 5 times a day.
    UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
    -I have gone to find myself, if i get back before i return, keep me here-


    Trigirl
    Veteran Member


    Date Joined Jan 2006
    Total Posts : 768
       Posted 2/1/2010 12:18 AM (GMT -6)   
    Guess you're not talking about 5 cookie meals!!
    This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
    H.W. Longfellow
    Thyroid cancer removed 1988
    Stomach problems finally figured out 2001 Crohn's/Colitus
    Tried every drug without much success
    Colon/rectal cancer removed Aug 2009
    Trying


    summerstorm
    Veteran Member


    Date Joined Aug 2006
    Total Posts : 6571
       Posted 2/1/2010 11:51 AM (GMT -6)   
    well sure, but you will then be 500 lbs!
    And dont do a strawberry short cake diet, lol. I actually didnt gain weight on that, but god the gas and heartburn!
    UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
    -I have gone to find myself, if i get back before i return, keep me here-


    privey
    Regular Member


    Date Joined Oct 2009
    Total Posts : 453
       Posted 2/1/2010 1:29 PM (GMT -6)   
    Hi trigirl,
    I too struggle with the acceptance of my ileo "privey". It isn't so much of a body image thing as it is a learning curve which I crest and think I'm going over to find I have just slid back a little again. Priv won't be a year old until the end of June and hopefully by then she and I will have figured each other out.
    She burps and gurrgles all the time but other noises when I'm out seem to muffle her. I think we hear it louder than it actually is because we know what it is doing. Sometimes I just want to say "not bad manners, just good beer". Take care cause I care and I know we'll get better with time.
    Damagedgoods you are a wonderful person and it is their loss so hang in there honey and get strong and healthy and they can kiss where the sun don't shine.
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