Ileostomy bags won't stick and leak after a few hours... Help!

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Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/22/2012 9:39 AM (GMT -7)   
Since thursday my bags have been leaking and only after a couple hours... I've used adhesive remover, washed the skin, i use barrier wipes and stoma powder. I have a few different types of bags too and the ones that have worked well aren't even sticking.

Any advice would greatly be appreciated. I can't stand this and am afraid to go anywhere or sleep for very long bc of this.

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 4/22/2012 10:20 AM (GMT -7)   
Ditch the stoma powder unless you are crusting it for some reason, I have found that it prevents the bag from sticking well as opposed to helping it stick. Has anything around your stoma site changed - i.e. discharge, swelling/shrinking? Is your stoma ducking down or retracting during peristalsis. Mine was doing that and I switched to a convex pouch and haven't had an issue since - I wore a belt for a couple weeks when I changed and it sort of trained my stoma for lack of a better term. It stands up a little more now - here is my process - adhesive remover wipe down all around the area, Clean with wound care cleanser then wipe down to dry. Apply cavilon no sting barrier film all around - apply stomahesive paste to pouch barrier. Stick it on and hit it with the hair dryer on the lowest strength/heat setting for 30sec to 1min depending on how antsy I get. I try not to bend over or do anything crazy for about 10 min after I put it on.

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 382
   Posted 4/22/2012 11:28 AM (GMT -7)   
 
allbluezoo has a good system and is pretty much what I do, with the exception of using paste.  I use Eakin seals and really like them.  Switching to convexity also stopped my leaks.  I get 7-10 days with my set-up.  In my testing days, I have gone as much as 12-14, but would not recommend going that long.
 
Make sure if you are using soap that it is not one with moisturizers in it.  I use Dial.  I have read others use Ivory or Neutrogena, but I have not tried any other than Dial.
 
I am also a firm believer in the use of heat and pressure when applying the wafer.  My hairdryer is my friend in this journey, being very careful to shield my stoma.  I use heat to dry my tummy, then to dry the Cavillon, then to heat the Eakin and apply it, and then heat the wafer and finally apply it.  I apply firm pressure for a solid minute once I put the wafer on, pushing all around and also using my fingers to push around the stoma to make that seal tight.   Then I alternate heat and pressure for a couple more minutes.   Sounds like alot, but it really isn't.   And, it really has helped extend my wear time which was only 2-hrs to 2 days in the beginning.
 
I have read that some put the Eakin and the wafer in their bra while preparing their change.  Another mentioned using the heating pad for 15 minutes after her change, if she had time.  I have thought of using the heating pad to warm my Eakin and wafer while I am preparing my supplies for my change.  I may just do that next time and see if that works as well as the hair dryer.  I would still use my dryer for drying my skin and Cavillon, though.
 
Good luck :-)
 

57 year old Grandma in the Buckeye State.
DX'd in 2006 with UC and in 2007 DX changed to Crohn's Colitis.
June 2010 had 10 inches of my colon removed due to a stricture.
Refused Remicade and Humira and opted for what I was certain the end result would be.
July 2011 had a proctocolectomy and permanent ileostomy without reservation.
Got my life back and stoma Lillie and I are doing great !!!

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/22/2012 11:30 AM (GMT -7)   
I think its shrinking... My husband says its so much smaller than it was in the hospital. The stupid thing 'dances' as i call it sometimes, other times its squished like dont touch me. My home care nurse went to town with the stoma powder which i didn't like. The skin around my stoma is all kinds of irritated bc i have to cut a space out because my surgeon put a mucous fistula from my colon beside my stoma.

I only have one piece bags (2 pieces failed miserably in the hospital bc of the mucous fistula), adhesive remover wipes, barrier film spray and wipes, stoma powder... No paste. My bags have stuck fine til this past week. I don't know why other than it looks like the bags are not sticking well enough around the stoma and stool works its way under the beeswax crap that holds it to your skin. (i'm not a fan of any of this stuff if you can't tell) i can't wait for and dread the reversal surgery around july. Ive read what people
Posted on here about their reversals and it scares me but i want to not have a bag since before my ileostomy. I also have an open wound a few inches away from my ostomy that the bags like to leak right towardsand into... I've had an infection and won a 2nd abdominal washout from. Not fun at all...

I just want all this to be over... =,(
Diagnosed with Chron's December 2011.
Remicade - had 2 loading doses, waiting on 3rd.
Prednisone (just started tapering 12/27). Protonix.
Bentyl (sp?), Percocet, & Zofran as needed.

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/22/2012 12:37 PM (GMT -7)   
The wound is packed and covered and doesn't leak as far as ive noticed. I had abcessess and then an infection and a softball sized hematoma around my bladder/uterus removed. I had a diff kind of bags and those didn't stick either. Idk if they were just a bad batch or what. I have the worst luck the past 6 months..

The home care nurses are not wound/ostomy nurses and don't offer much help... Make me angry bc i thought i would have a wound/ostomy nurse. I think i'm going to call the awesome wound/ostomy nurse from the hospital. I can't mentally handle much more of this crap (literally and figuratively). Crohns has effectively ruined everything in just a few months of my first flare. My marriage is just about the only thing thats good thats left. I haven't and still can't work, drive, go to school. I'm too weak and still healing bc of all the complications i've had. :(
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

MeMe214
New Member


Date Joined Apr 2012
Total Posts : 1
   Posted 4/22/2012 12:44 PM (GMT -7)   
I had the same problem the first year I had my ostomy. It leaked so much I couldn’t leave the bed let alone go out. After going to the doctor so much luckily my doctor decided to do a revision. He basically refashioned it to stick out just a little bit and that worked for a while. When it started to leak several months later, I was panicked. So I also tried several different bags and wafers and finally found out that the Sur-Fit Natura ConvaTec 2 part system worked just great for me. I use 3 Eakins seals which I break apart and mold them around the wafer opening. I also put paste around the edges and once I have attached the wafer and bag, I use 3M Medipore tape on the outside edges which touch my skin. I know it sounds like a lot but it works and it holds them in place for about 3- 4 days, sometimes longer. I love the 2 part system because if the bag needs to be changed I don’t have to remove the whole thing. I truly understand how having your bags not work can be completely debilitating, so I hope what I have shared helps.
Good Luck

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 4/22/2012 1:17 PM (GMT -7)   
Andi,

Just two things: you are going through the sstoma shrinkage time, and everyone goes through this and the bags will leak until the stoma stops changing size. I went through this for several weeks, sometimes having even 4 leaks per day.
And: yes - do get to your stoma nurse. She is going to help you find the right system that works for you and remains stable. As soon as the stoma stays one size and you have a reliable system, you can get on with life and this all won't be so traumatic.
UC Dx and then 7 years of no symtoms. But when they started, they didn't let up, ASA stopped working, pred stopped working, and azathioprin did nothing. The threat of much more radical drugs, plus the fact that a stricture was about to shut down my colon, led to my decision for a total colectomy in April 2011, 2nd step December 2011 and ... TAKE-DOWN WAS ON MARCH 19, 2012.

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/22/2012 2:18 PM (GMT -7)   
The rehab hospital stay after the hospital was traumatizing enough. This is the icing on the trauma cake. If anyone told me about this i was too out of it on pain medsto remember much from the good ostom nurse. I remember the bad one at the rehab hospital for sure.

I cant deal with leakage for weeks. Im going to go nuts. This crap is all just torture healthy people devise to me at this point. Ive had so many bad nurses/docs and other medical professionals that i trust none of them and am rethinking even becoming a nurse.

I cannot wait til July... I want to talk my surgeon into doing my reversal sooner if i can help it... I feel disgusting.
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/22/2012 2:21 PM (GMT -7)   
Thanks for the advice! It is great to hear from other people who have had or do have ostomies. Im so tired of being confused, frustrated. Its so lonely even though i have support from people around me.
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 4/22/2012 2:55 PM (GMT -7)   
Andi you are sounding like me one year ago. I also went to rehab for 3 weeks, about 3 weeks after my colostomy, with a brand new stoma. Yeah, the place was full of idiots. (The stoma nurse there - her fake fingernail broke off while she was cutting my wafer way too big, and the nail fell in the bag.)
Don't despair. When you get this perspective you will see what I mean. I had these leaks for about 2-3 weaks but I think they would not have lasted so long if I had just stayed home and not gone to rehab. It got so that they were no longer an emotional issue. I just got up and changed it, got up and changed it, got up and changed it. It's a practical issue, not an emotional one. The thing will change size and there is nothing much we can do about it. Then it will stop and and the bags will be good for as long as they need to - I had one-piecers so they only had to be good for 24 hours but I often left them on for longer if I was really lazy.
Do whatever you can to keep the skin intact. Stoma poweder worked for me and healed the irritation.
My tip - don't even use soap to wash, just water. Try putting the stoma powder only directly on the irritated spots, use a qtip.
Just hang in there and try to even laugh about it. I know that the colostomy for me was the absolute horror, and then I couldn't look at the stoma without bursting into tears, and then the leaks were the ultimate flip-out for me, it was just absolute chaos and everything seemed out of control. I really thought I would never be able to re-enter the world or my life again. All of these feelings came into perspective and as soon as the shrinking stopped and I got a reliable system (and got home from rehab), I could cope. I had to live with my stoma 12 months before take-down, and I learned to love it and be very tender with it. If there was an occasional leak, because of too tight clothes or output that got too thick, I dealt with it in a very practical way.
I promise it will get better and I promise that you are not, nor is any of this, disgusting at all.
UC Dx and then 7 years of no symtoms. But when they started, they didn't let up, ASA stopped working, pred stopped working, and azathioprin did nothing. The threat of much more radical drugs, plus the fact that a stricture was about to shut down my colon, led to my decision for a total colectomy in April 2011, 2nd step December 2011 and ... TAKE-DOWN WAS ON MARCH 19, 2012.

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 4/22/2012 2:56 PM (GMT -7)   
PS: I have the feeling you might do well using coloplast convex light plus eaken ring. It will accomodate your stoma's changes and "dancing".
UC Dx and then 7 years of no symtoms. But when they started, they didn't let up, ASA stopped working, pred stopped working, and azathioprin did nothing. The threat of much more radical drugs, plus the fact that a stricture was about to shut down my colon, led to my decision for a total colectomy in April 2011, 2nd step December 2011 and ... TAKE-DOWN WAS ON MARCH 19, 2012.

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 4/22/2012 8:47 PM (GMT -7)   
I agree with everything B'Dereh said in those last 2 posts, great advice! Try to pick your chin up a bit hon, that temporary stoma may have saved your life, yes?

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/23/2012 8:37 AM (GMT -7)   
Ive gotten a bag to stick for over 24 hrs... I'm hoping it can continue... Different barrier wipe thats actually sticky... Hoping thats the trick i need.

Saved my life? Probably. Will I be happy I got it? No. I know people are grateful they got one, i'm sure my husband is glad I got one. I'm not. I'm still weak, haven't gained any weight, still cannot work and am considering temporary disability at 24.... I NEVER would have before all of this but i'm tired of relying on my husband to support us and pay all the bills. It's not fair to him to work to support us and take care of me on top of it. I'm incredibly stubborn and won't be happy until i'm back to 'normal' and can work and take care of myself..

We're going to florida in may for a wedding and I'm dreading it. I won't be able to swim with the open wound on my stomach. And i love to swim. Sucks we're staying on the beach too. I hope i can at least walk upright and straight by then. I have a drain and dressings on my wound that makes it very uncomfy to do so...blah.
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 4/23/2012 6:00 PM (GMT -7)   
At least you are here to complain :)

tiaeight
Regular Member


Date Joined Sep 2006
Total Posts : 236
   Posted 4/23/2012 8:50 PM (GMT -7)   
I also, gave up the powder. It was a lot of trial and error for me. I found that a thin line of paste is the best for me. I don't have to change for 5-7 days!

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/23/2012 9:13 PM (GMT -7)   
I'm sorry i'm pretty much only complaining. I'm to a point where i'm just frustrated and no one around me understands. I do appreciate your advice!

I got a bag to stick for 2 days now. Doubt it'll last past tomorrow but thank god its stuck for two days at least... I used a different barrier wipe thats stickier and that has seemed to help my problem at the moment. My nurse ordered more for me so i hope thats all I need.... I wish they would've let me do pediatric bags so i can try them because i'm tiny.

Any tips on swim wear?... I was going to buy a long tankini for our trip to FL in may. I don't want to spend a lot on a suit I won't wear much either... I'm thinking of avoiding the pool/beach altogether. Less questions to deal with from people i don't know. I don't think i can handle to tuckingy bag into my pants that i've read people do... My luck the sucker would get pulled off. I'm dreading summer and the wardrobe...
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3123
   Posted 4/24/2012 6:24 AM (GMT -7)   
Sorry you've been having such a hard time -- in terms of the bag sticking, feeling weak, and missing out on so many of your plans. It is very frustrating. Things will get better! It sounds like they are already starting to get better w/the bag sticking longer etc.

One thing that I don't think anyone mentioned -- be careful with the adhesive remover. You have to make sure you wash it all off, or else it will remove your new pouch too. I don't use it usually -- I just take the old bag off slowly, peeling the SKIN away from the bag, not the bag away from the skin. Sometimes I use the safe and simple peri stoma wipes -- they have a mild adhesive remover in them that doesn't affect the new pouch sticking (these are to clean up when I'm not taking a shower at a pouch change).

As for bathing suits, a lot of people have had success w/tankinis, and patterns can help hide the bag better. I made my own with a pair of short running shorts w/underwear built in and a top w/a bra built in. The skirt style works well too, if that's more your thing.... I wear the ostomy secrets swim wrap over the bag, but a bandeau tank top would probably work just as well.

One thing I do that may be helpful, maybe not: at the end of each day, I write down 5 things I appreciated in the day. If it's a really bad day, they may just be things like, "I can walk" or a particular food I ate, on a better day they are more personal.... the goal is to just make sure that I keep a fuller picture in mind, and not solely focus on what's going wrong in my life. You have a lot of reasons to be angry, disappointed, sad, etc. and I think it's fine to go there and feel them fully.... but I cope better when I see that there's more out there than my distress. Again, take or leave as is helpful.

Oh, you can call the company and ask for samples of pediatric bags. Are you going to be getting all your supplies through the nurse or will you be ordering your own? I got things through the visiting nurses, but when I stopped having them, ordered my own.... then you can get whatever kind you want. If you order from a big supply house like edgepark, they can send samples too.

Hang in.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 4/24/2012 6:26 AM (GMT -7)   
Hey Andi - I totally understand your frustration, I've been there. And I bet if everyone on this board chimed in they would all agree that they were there at one point too! Heck, there was a week that I was changing 3-4 times a day and I was just a total basket case - I pretty much had a nervous breakdown in my bathroom. Standing there naked, Stella (my stoma) wouldn't settle down for anything so everytime I got ready to put a new pouch on she would mess everything up, then once I DID get one on my husband started trimming it (b/c I have an 11" incision down my middle which at the time was still open) and he CUT THE POUCH!! I just layed on the floor and sobbed. Then I started slamming cabinet doors - then I started punching my husband in the arm. He wrapped me up in his arms and just rocked me back and forth reassuring me that it was all going to be fine - I made the right decision - I am stronger than I know and that he and lots of other people would have totally given up by now. I made a phone call to my WOCN and she put together an "emergency kit" for me of new things I hadn't tried yet and POOF - a wafer with convexity and the belt solved my problems! I used the belt for 2 weeks and it almost "trained" my stoma to stand up a little more. I don't wear it on a regular basis anymore but probably will as soon as I get back to running - as soon as my hernia belt gets here!

Have your nurse order you the pediatric bags - that is what I started out using b/c I am really small as well (5' and at the time 92lbs). As far as swimwear goes - I wear a tankini so that it is easier to go to the bathroom if I need to. I have been to the pool but I wasn't able to get all the way in b/c I had a PICC line at the time. I still haven't been cleared for "submersion" b/c I still have a scab to come off my abdominal incision and I am battling some type of skin issue around my stoma - but at some point I will be cleared!

I write a fashion blog for ostomates (and non-ostomates LOL!) you should check it out http://detouredfashion.blogspot.com/ and see how I am making my ostomy work with the clothes I had BEFORE my ostomy! And - just for you, I'm gonna go right now and post a picture of me in my board shorts and bikini top WITH MY OSTOMY!

I know it is a difficult time - you weren't prepared for this like most of "us" are, but do try to find the positive and be pro-active in maintaining the lifestyle that you want. No one is going to want to help you if you aren't willing to help yourself. Lastly, when you think everything TOTALLY SUCKS and how can you possibly deal with this "thing" for one more second - PLEASE REMEMBER that someone somewhere has it WAY worse than you. I'm here if you need to vent privately or want to chat about anything.

Go check out my blog - I'm posting that picture NOW!

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/24/2012 9:11 AM (GMT -7)   
Allbluezoo- thank you :) my bags are clear tho... You see the poo and stoma. :/ what are the band things in your blog? I can't do regular pants yet because of a drain i have, but i want something to hide my bag when i do. I doubt it would have a problem fitting in waist bands of my pants i do have. I lost more weight since my surgeries. I'm 5'2 at a whopping 93lbs despite eating the highest calorie food i can get my hands on or order when we're out. My nurses I've had at home aren't wound/ostomy nurses and I've found they don't know much at all about ostomies and problems with them... Its incredibly frustrating that the person taking care of you can't answer your questions and doesn't help you out much. And I'm not saying that they are bad nurses either..

Bluegrass- thanks for the tip. I washed the remove off before this bag and its done pretty well. I have to use it because my bags have a tape ring around the sticky wafer. (idk if thats the right term or not) tape loves my skin and sticks to it like no other, but my skin hates it. My skin is incredibly irritated from the bags and tape. :/

I've lost 40 lbs since this all began and most of it was muscle i had so theres definitely a new body on top of scars, wounds, and a stoma. I haven't had a shower since february due to drains constantly being replaced in my stomach. The 'bird baths' in the sink are far from a shower and a shower definitely can make a person feel better. I've constantly tried to go back to work since I was diagnosed amd everytime I get close to doing so i end up back in the hospital and weaker than before. A bag not sticking has been an emotional problem because it makes me afraid to do the few things i CAN do at this point... I don't want to leave the house because of a possible leak. I'm glad everything is always dandy for some people. Yes, as I've said before i know people are thankful for their stomas. I'm sorry how I feel at this point makes some people sick. I don't want a pity party. I wanted to talk to people who can relate... And yes I needed to vent. No, I didn't have time from the time i was diagnosed until my colon perforated from severe crohns disease (my first flare ever) to deal with the diagnosis let alone changing my whole body and loss of functioning like i did before. Thank you to those who have listened and given me advice and shared their stories. I loved the fashion blog, because I will be doing the same thing soon after the drain comes out. I want nothing more than to be back to my old self. If I can finish nursing school and deal with working in a hospital after the past six months I was thinking about going to school to be a wound/ostomy nurse. Who better to be one than someone whos had one?
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/24/2012 10:10 AM (GMT -7)   
I'm gonna give you a bit of tough love for a minute. Remember when you were a kid and your parents told you to do something, like clean your room, or do your homework? But instead of just doing it, which would have taken 20 minutes, you pitched a fit and refused for an hour because it was wasting your time, but in the end you still had to clean your room, or do your homework.
You have a bag, no matter how much you worry, or get upset or feel bad for yourself, you are still going to have a bag. If you can pull yourself out of that and just do things, you wiill feel better. Stop worrying if the bag leaks, if it does, oh well. If it leaks in public chances are noone will even know what it is, noone would expect poop to be on someones front. They will just think you spilled some food.
As for your beach trip, you can't get all the way in the water, but nothing stops you from getting your legs in. I don't know exactly how what the wound thing on your stomach looks like, or how big it is, but I do know if someone looks at your stomach and sees an odd bulge they aren't gonna think, omg she has a bag! If they even notice and care enough to think, they will think its kleenex.
As for your bathing suit, I just wear tankinis with a skirt, in fact one is the same one I had before surgery. My clothes are the same I had before surgery. I understand how tucking your bag in your pants might seem weird but it will help with clothing. I just tuck it in my undies and fold it up. The only time I wear a belly band, you can get one at a maternity store, is if I'm wearing skirts. I don't really need it, I just do. Or if I'm wearing something tight and I want to hold it flat.
Can you go to a salon and have your hair washed really good? That will make you feel tons better! If you have a removeable shower head, wash your legs with it, wash each arm seperatelty. Does that make sense?
I never use any adhesive remover, I only use water. You've gotten two days now, don't automatically think its fixing to fail, just have a postive attitude about it! Which I know is easier said than done!
Like blueglass said think of five things you are grateful for each day, or even one thing! And yes you will get annoyed, I got annoyed just a few minutes ago, but then remembered if I didn't have the bag I wouldn't be worrying about drying it quickly to get to school to help out. Id be in the bathroom on the toilet! Yes I had time to process it and realize it was for the best, but if you had more time before the surgery, you still would have been sick. It may not seem this way but you actually.missed a lot of what most of us went through, wasted years with sickness and an agonizing decision of surgery or not. I actually hoped for an emergency situatuion so I wouldn't have to make the decision on my own.
Anyway, I rambled, moral of the story, be happy you are alive, accept the bag, and get on with life!
Good luck!
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-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 4/25/2012 6:26 AM (GMT -7)   
Andi - GET DIFFERENT POUCHES! They often keep you on the clear ones while in the hospital so they can more easily monitor your output and check the status of your stoma. Now that you are home do what you want!

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 4/25/2012 12:07 PM (GMT -7)   
Sorry you're having such a rough time.

I'd try opaque pouches where you can't see the contents so much.. it will make you feel much better. Also really suggest you try convex wafers. I didn't think I needed them, but after suffering daily leaks and blow outs I tried them and haven't had a leak since! Am sure you'll feel happier and more confident with the whole situation once you're in control of the leaks. You could even get a cover for the pouch.. some manufacturers make pretty lace covers etc which should help. You really do need to get some help from a stoma nurse too. Can you ring coloplast and get some samples? try a light convexity wafer as I'm pretty sure it'll fix your problem. Also get the smallest bags you can find.

Hang in there.. it's tough for sure, but you will turn a corner, and you will start to feel better soon. It's a case of building up your confidence and trying to stay positive.. small steps.

I had a blow out on the beach about 3 weeks post surgery and had to change my whole bag system standing next to the car with poop dripping down my stomach, with my kids watching.. but we all just laughed. No it's not easy, but what other option do you have?

You went through an emergency situation and ended up with a stoma. That is hard. And if I may make an observation. You sound very angry and resentful (quite understandably) and I just wonder if seeing a therapist might help? you really sound like you need to vent and get it all out and some professional help may be the thing you need.

You will get through this. Hugs {}
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June 2010 - Emergency partial colectomy for peritonitis/perforated diverticulitis. Temporary ileo, reversed Oct 2010.
Reversal failed - then diagnosed with colonic inertia
July 2011 - Permanent end Ileostomy - elective
Follow my blog - http://bagthatruns.blogspot.com/

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/25/2012 3:23 PM (GMT -7)   
I'm afraid to try different bags because everytime I have they leak because the wafer/thing that sticks to me is different and does not stick at all. My visitng nurse ordered more of the barrier wipes i got as a sample in the hospital and so far they've fixed my problem... I'm waiting for another to crop up because thats how things tend to work for me. I get one problem fixed and theres another right behind it... What should have been a week long stay got drug out into a 7 week ordeal at the hospital from all the complications i had. Abcessess, clot, pain management or lack there of to name a few.

Thanks for sharing the beach story you've got more guts than i do. I'm pretty much just mentally exhausted and haven't had a break since oct/nov. I've thought about talking to someone but its one more appt m husband has to drive me to because i'm still on pain meds, and hell can't do most stairs alone because i'm so weak and i dont want to get somewhere and get stuck... This has all been emergency everything pretty much and i'm just tired of all of it. To not have appointment after appointment w/docs, nurses, physical therapy would be fantastic. This feels like its been drawn out past what it needed to be... If one of my trips to the ER for dehydration from diarrhea would've been taken seriously by the ER docs (even they knew my colon wall had thickened no further tests were done until I made a GI appt....). If I could go back to october i would make myself an appt w/GI docs sooner and not wait to be crawling thru what i needed to do for school and work while going to the bathroom a lot. Can I change it? No. If i would have recovered by now and not had to have had two surgeries after i would be better off. I know me bein stuck in the house all day alone while my husband is at work is a big part of my problem. I'm used to go go go and now i'm stuck in park body-wise and still go go go with my brain. I hate not being able to drive and go to work the most and i'm not used to and hate relying on everyone else for pretty basic things. I will be estatic when I can get up in the morning, get ready and go to work... Who knows when that will be but I hope to god its soon. I'm going to drive just to drive because i can when i get off pain meds and am strong enough to get in and out of my house by myself. I'm not lazy and being weak makes me angry because i took for granted how strong i was and what i could do before i was sick... I highly doubt most psychologists/psychiatrist will be able to relate let alone understand that... And i am so tired of docs/nurses telling me how things will feel that they've never had done or how i should feel for that matter. I've had many kidney stones before and while in the hospital i thought i had another one and the doc i had told me he passed one yesterday and didn't order an xray, nothing. I yelled at him i wanted a different doctor because the pain only got worse (and i passed a 6 mm stone w/ ibuprofen and a heating pad for a week i've got a high pain tolerance...) the next doc got an xrayand found i was backed up with poo because that @$$hole knew my stool was thick from the ostomy and i was on a lot of pain meds which caused it never ordered a stool softener which is pretty normal anyways in the hospital. I won a horrible night on a powerful laxative to clean me out... Thats one of many screw-ups i encountered during my stays that has instilled a huge lack of trust in the medical field also.

On buying covers and other things like that... I hate to spend money that i haven't worked for on that stuff. Especially because i'm hoping the reversal surgery will be in early July. So it's not going to be used for long and i have no one i know i could pass the stuff off to... I'm cheap if I can be. Although a belt may be a nice thing bc the poo gets heavy sometimes and the bag pulls on my skin. Not a comfy feeling.

I'm not making excuses, i'm just tired and worn out. I wish i could take a vacation from my body. To recharge, be able to sleep how i want, to be able to walk through a whole store again and shop, and just be able to relax. But that is not possible, and just forcing myself through until the day I can do those things again is the ony choice i have whether i like it or not. And i know people are going through worse. Theres always someone worse off than you, but everyone can admit that even though you know that YOUR problems are more important in your mind at one time or another than someone elses... I don't think theres one person who can say they've been happy and optimistic the whole time they've been injured, sick, whatever. We're selfish. I put on a good face most of the time in the hospital because i hate worrying people and i'm just to the point if someone else can push me thru that'd be fantastic but i know i have to do it myself (before anyone gets undies in a bundle over that statement).
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

Andi87
Regular Member


Date Joined Dec 2011
Total Posts : 195
   Posted 4/25/2012 3:24 PM (GMT -7)   
Holy smokes i wrote a lot. Sorry.
24 yr old female, crohns robbed me of graduation from nursing school in december..
Diagnosed with Chron's December 2011.
Perfoations in colon- 1/2 of colon removed and temporary ileostomy placed Feb '12
2 abdominal washouts- 2/12 & 4/12

Dreading the reversal but cant wait to NOT have an ostomy again!... I don't remember what its like to be 'normal' even though all of this started only in Oct 2011

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3075
   Posted 4/25/2012 6:52 PM (GMT -7)   
Don't worry about writing a book...sometimes you need to get that off your chest!

You will definitely want to try different pouches. Clear ones are preferred in the hospital and you should be able to get the exact same one you are using in opaque.

Have you contacted your local ostomy association? I bet they can hook you up with a visitor who could do a lot of help!!

Here's a link to find a WOC Nurse in your area:

http://www.wocn.org/?page=Nurse_Referral

Don't settle until you find someone to help!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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