A FEW QUESTIONS....PLEASE HELP!!

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RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 12/18/2007 2:22 PM (GMT -6)   
Hi everyone....
 
I'm not a newcomer to this forum.  I had a total colectomy in April '06 and a reversal July '06.  I got pregnant with triplets and lost them at 21 weeks due to a placenta infection from the cerclage, bowel obstruction and twisted necrotic intestine.  They did emergency surgery on and I ended up with an ileostomy July 07that I think is permant but I determined to get a reversal if possible in the future.  I'm so amazed by all the great attitude and support on this forum.  Why am I so depressed if you all seem to be living normal lives and are not limited to anything? I'm miserable with this bag...after a lot of trial and error I finally got it down although my husband plays a big part in changing the bag.  Here are my questions.....
 
1.  I know it's gross but I can only shower once every 5 days and that's when I change the bag.  The rest of the time I was my hair and my body on the sink in the bathroom just so I don't get the bag wet.  There has to be another way... I've read that people take them off but I could never do that while my poop is running down my leggs, I just can't.  Then the wafer will get wet...are they water proof?  Please share your experiences with me. 
 
2.  How do you go about wearing bathing suits? Stoma caps? but what if my stoma is constantly pouring and fills up the bag quick?
 
3. CLOTHES!!!!!!!! I haven't found a solution to this and I a member of the leaving clothes in a big hump on the floor club.  Pants and jeans don't fit me anymore.  Do u put the bag under the pants?? Doesn't it puff out and is noticeable?? doesn't it bubble on top on the part that sticks out of the pants?  Thank goodness that leggings are in right now because that's all I've been wearing....leggings and really long empire waist tops.  But what do I do when they go out of style????? I've asked about this before on this forum but I didn't really get any answers that worked for me.  I live in cooollldddd New Jersey and I have to wear pants so please someone help me.
 
4.  I heard about the night drainage bags but not sure how they work. Any info on this is appreciated so I don't have to wake up every two hours to empty.
 
I still have soooooo much more to ask and I'm trying to get used to the idea that I may end up with this for the rest of my life but I need help and nobody to talk to....unfortunately the hospital that did the surgery for me don't have stoma nurses to come and help so you're all i have.
I'm looking forward to making new friends and I'm happy to know I'm not alone with this bag situation.
 
Thanx

RITAS
Regular Member


Date Joined Feb 2006
Total Posts : 140
   Posted 12/18/2007 4:28 PM (GMT -6)   
Ash83,

Thank you and I'm sorry for your loss as well. It has been a rough roller coaster with dealing with triplets, much more so than the bag but I'm trying get myself to accept the present and tuck the past away in a storage box in a safe place in my closet....(literally...lol).

I take showers exactly as you do but in front of the sink. I didn't think of the wrap ..great idea I'll try that. The bags I use are the Hollister 2 piece new image but they are cloth. I love them and haven't had any problems they also have the lock and roll velcro system on the bottom. I tried the convatec but wasn't to pleased with them.

I know what your saying about the tank top and bikini...lol your billiant!!!! How do you hide the bag under there??? Jeans and pants don't button on me the low rise don't either. They hit the bottom of the wafer and it's very uncomfortable. I'm jealous that you were able to work it out and I can't seem to understand.

I'm 31 years old and hate the way I dress. It's still on the trendy side but come on you want your jeans when you want to go out and look "hot" right??? How long are the bags u use? mine are 12inches maybe if I try the shorter ones dressing will get a little easier?

As far as the drainage bags go I saw them in the edgepark catalog that's where I get al my supplies and it's a bucket that's put by the bed and is attached to a long tube that connects to the end of your bag and drains all night so you don't have to get up.

How old are you and where in NJ do you live if you don't mind me asking. I would love to chat with you some more and thanx for all the valuable info
Rita
Crohn's Free Since April '06
Total colectomy/ileostomy April '06
Reversal July '06
Bowl resection/ileostomy July '07
Currently trying to learn about the "new me"


blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 12/18/2007 5:03 PM (GMT -6)   
Ritas,
 
First of all I am so sorry for your loss, I can't imagine.  To answer your questions.
I shower every day, complete shower.  I wear a two piece system so I just snap off the bag (after emptying of course) and jump in the shower.  The appliance wafer is just fine in the shower.  When I get out I put the bag back on.   I do turn the blow dryer (on cool) on it for a few minutes while I am putting on makeup.  If you use a one piece it can get wet( I use to wear a one piece) I would just dry both pieces. 
I wear a one piece bathing suit and I just wear my appliance just like I do under clothes.  It holds up fine in water.
I do wear the same clothes I use to. But I have found that if they are a little looser they are more comfortable.  I don't have a problem with bulging or anything. 
I try to live just like I did before and it did take time to adjust, but its very easy now.
April


Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero), 6MP 125 mg po qd, Pentasa 500 mg 3 po tid, Calcium 400 mg with D tid, Iron po tid, Vit C po tid, Tylenol #3 prn, Multivitamin, Remicade - Quit working, Asacol, Colozal, Abatacept Studyl
 
 
 

Post Edited (blue85) : 12/19/2007 8:41:30 AM (GMT-7)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 12/18/2007 11:41 PM (GMT -6)   
Hi Rita
 
When I shower on non-change days I just shower as normal and get out and towel dry my bag along with the rest of me. The wafer remains a tiny bit wet around the edges but body heat soon takes care of that :)  On change days, I take everything off (I wear a one piece bag) and let the water run over my stoma to get it nice and clean. If Harriet (my stoma) outputs while I'm in the shower, it all goes down the drain anyway. You can clean the shower out with bleach afterwards if you want to.
 
When swimming, I just wear a one piece bathing suit with either a pattern or splash of colour over my stoma site. That disguises any slight bulge which may be there and never, in 32 years, has anyone commented they can see my bag under my bathers.
 
In time, you'll get back to most of the clothes you used to wear. In my teens, I used to wear the tightest jeans imaginable and no one could tell I had a bag. Yes, it would fill up, but I'd just go to the loo to empty it, no big deal really!  I wear my bag at an angle towards my groin area so it doesn't hang down my leg. That way it's less noticeable as it fills up because it's not all on one side. I find it makes it easier to empty my bag while sitting down on the loo with my bag angled this way - just aim between my legs :)
 
The night drainage bags are for those with urostomies. They are not designed for and won't work for those of us with colostomies and ileostomies. Perhaps you could try switching to a bigger bag at night (if you wear a two piece bag) to save you getting up and emptying all the time?
 
Just a bit more advice too. Please, please try and change your bag yourself without hubby's assistance (unless, of course, you have a physical disability which prevents this). You CAN do it :)  I was doing it all by myself at 10 years of age so it's not that hard once you get used to it. It's a BIG step towards accepting your ostomy and dealing with it. Have your husband there for support for the first couple of times, but do please try and do it for yourself. You will be nervous but you CAN do it :)
 
Take care and good luck.
I have had an ileostomy for 31 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/19/2007 6:28 PM (GMT -6)   
1. I take half showers sometimes too, but i do it a little diff, i have the removeable shower head also, and i stick my head in and wash my hair and my upper body, then i put my lower body and stinky parts in and wash them. All that doesn't get wet is my bag. The only time I do this is when i have to take a shower when I am home alone wtih my little boy, that way if the bag does happen to get loose in the shower i won't have to change it. The rest of hte time i take a regular shower, But i won't take the bag off either, i know it runs down the drain, but it's gotta go down your leg to get to the drain, ick.
2. I have atwo piece bathing suit, i think they are called tankinis, my husband thought it was a tennis dress, lol. I wear the same bag you do, and i actually wore a pair of underwear under my bathing suit, and tucked the bag up under that, taping it up at the top, and it didnt' show at all, or at least i dont' think it did.
3. I wear the same clothes, at first i was wearing a 10 instead of an 8 just for the looseness around the stomach, it was still tender. But now i wear my old clothes, low rise pants, it is easier to hide the bag in shorts though, i don't know why, it just seems to be. But i take my bag and angle it out from my groin, then flip it up to the right, so it sort of sits sideways on my stomach. I put those gel tabs in there and that helps the stuff to solidify and i take some gas-x before i go out, keeps it from filling up so much.
4. After you have had your bag longer you won't have to empty so often. It just takes a while for your body to get used to it.

We have a bunch of pics on our photobucket page, including some of people in bathing suits and i put up a pic with two shots of my middle section to see if people could guess which pic i have the bag on in. Those pics may help you to see how other people with ostomies dress.

Good luck!

21106
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/19/2007 7:49 PM (GMT -6)   
       I go by 21106 because that is when my surgery was done Feb 11 2006. I had a perforated colon and leaked into my body. I was within 1 hour of my life being lost. Sorry about that it's nice to have people who understand. I to am an every day shower person and when I showered I had left the bag on. I found that if I had an early dinner and got up about 1 hour before showertime I would fix my breakfast and lay out my clothes for the day. By that time I had my main early b.m. took my shower dried off then got partially dressed. ate my breakfast(not nearly as good microwaved). By this time the rest af my morning b.m. was done. Finnished getting dressed and went to work. As far as clothing I am a mid 40's male. I had to by slightly bigger pants and wore suspenders.
        I had the reversal surgery in May of 2006. Scar tissue still keeps me from the clothes I  used to wear. I still have a problem trying to loose the weight I gained after surgery because I can't work out. Any ideas? sorry about misspelled words, could not find spell check.

tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/19/2007 8:19 PM (GMT -6)   
Rita,
I am still getting used to my ostomy and showering as well. I used to take the "Glad press and seal" and cover the bag and seal around the bottom and sides and tape the top closed to my stomach and the bag stayed dry. I also use the Convatec two piece system and they have tiny round bags for swimming and I would pop off the larger bag and put on the smaller when I showered. Now I save those for baths and just take off the bag and let the poop rinse down the drain and replace the bag after. I worry about when I get the loop ileostomy, I will not have the luxury of thicker stool so I will probably go back to the mini bags. I still can't believe that I can all talk so freely about my doo-doo!HAHAHA! nono
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 12/22/2007 11:47 PM (GMT -6)   

Hi Rita,

I'm new to the ostomy world too. I had a total colectomy in October due to UC and hope to have a successful reversal sometime early next year. Showers and changing the bag have been two of my biggest hurdles. Clothes are another biggie, but I haven't tried to address that one yet. I'm still wearing warm-ups all the time. Cute warm-ups, but warm-ups nonetheless.  :-)    I spend most of my waking hours trying to forget that I have this contraption attached to me. Showers have always been an enjoyable time for me - away from the kids, the telephone, life's little stresses - a haven of sorts. Now they serve as a constant reminder to my situation. I wear a Hollister 2-pc. system, but I don't like taking the bags off for showering. Instead I just shower with the bag on and towel and blow dry it when I get out. The bag usually gets dry pretty quick, but the wafer takes a little longer. Of course, that ends up irritating my skin. As for changing the bag, I confess that up until 3 days ago, my husband has changed it for me every time. It was my little way of staying detached from it. I HATED having him do it even tho he was cool about it. It was humiliating to me, but I still refused to do it myself. If I learned to do it myself that would make it real and permanent and it's only temporary, right? Well, 3 days ago I was out shopping and had my first major leak. He was at work and couldn't get away. It was going to be 5 hours or more before I would see him. He convinced me to change it myself. It was either that, or sit around 1/2 naked and catch the output in a towel all day (yuck!), so I DID IT! I've watched him enough and read so many helpful hints on this forum that I just put my mind to it and did it and I have to say, it's kind of liberating to change it myself. I've done it once more since and so far, so good.

I'm so sorry for all the troubles you're having and especially for the great loss you've suffered. You did the right thing coming to this forum for help. The people here are wonderful and the suggestions and experiences are priceless. We're so fortunate to have this available to us. Imagine how alone people must have felt before the internet. It's comforting to know that there are other people out there going thru the same kinds of things. Good luck and let us know what works for you.  -Laura


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/23/2007 4:02 PM (GMT -6)   
Rita

I have had my bad for 5 months and I am still learning all the time. Last night I woke up in a pile of yuck because I applied my new wafer right out of the shower and my skin was still a little damp. I usually blow dry my skin, but I was just tired so I dried off with a towel and then applied the new wafer and bag. Of course, the wafer did not stick to my wet skin and my sheets, comforter, mattress and husband all suffered for my laziness. So, don't feel bad about asking questions. This is how we learn.

1. Showering - you have to shower more than once every 5 days. I shower with my bag on (normally). The materials dry very quickly and I always blow dry my bag. It takes about a minute to dry. I like to shower after my morning workout and before I eat to ensure my bag stays empty.

2 Clothes- I had to buy larger pants. I can wear my old jeans but they are not comforable. I found cut pants at The Limited which hide my bag very well. I can still wear a size 2 in these pants.

3. Swimming. I like to swim and I swim a lot in our community pool. I wear a Hollister Mini open-ended bag. I keep a towel at the edge of the pool. If my bag fills, I just slip the towel over my body as I exit the pool and then I walk to the bathroom. I can wear a two-pc bathingsuit but I prefer a one-pc.

4. I do not know what a night drainage bag is?

I am sorry to hear about your babies. You sound like a very stong person to have overcome such a terrible experience.

What kind of bags do you wear? Hollister gives you lots of choices that I like a lot. I can wear long bags, short bags or caps all with my wafer attached.

I hope this helps.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


Gillcom
Regular Member


Date Joined Nov 2007
Total Posts : 272
   Posted 12/23/2007 4:10 PM (GMT -6)   
Do you know thats a brill way to dry your bag, i never thought about blo drying it, hey, 2 yrs later and i'm still learning, lol,

Gillian
Ileostomy - Feb 05, Hernia on site.
Fluoxetine - 20mg March 05 - july 06
Citalipram - 20mg July 06 - upped to 40mg now.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/23/2007 11:12 PM (GMT -6)   
candyland-i had my bag for about two months before i changed it by myself. My husband did it for me, he's a nurse and i just coudl not for the life of me figure out how one person could do that by themself, seemed like you needed too many hands. But one day i just decided to try it, i had to go get him to help me that time, but after that i have gotten where i can do it in less than five minutes. It takes me longer to get my stuff together to change it than it does to actually change it.! I know your's is temporary, but i think if you go ahead and accept that you have it, you will be alot happier. I know it's not an easy thing to accept, and at first that was all i thought about, that thing hanging off of me. And now, i forget its there most of the time.
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