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Gribby88
New Member


Date Joined Jun 2011
Total Posts : 17
   Posted 7/12/2011 2:12 PM (GMT -6)   
its only been a month and a half since i got my surgery.. and i have been going thru hell not only with my emotions but with the bag itself. I put the bag on the way i was taught and after i came home from the hospital it was fine i didnt leak... then out of no where i started to LEAK. . since the first of july i have gone thru 20 bags and i had to pay out of pocket for them 200$ if you were wondering... because my insurance only covers 10 for the month and i am just flying thru them. My Skin is ON FIRE it literally makes me cry... at this point i have no bags so i have gauze and tape over my stoma. i cant do it anymore i know its only been a month an a half but ive literally only had about only 1 week of no leaking... all my clothes are becoming stained i cant go outside with out leaking ... its just been a mess .. i dont know what to do... ive even called my doctor up crying to her that i want the reverse ASAP.. she just keeps telling me to be strong and things will get better but its easier said then done... =[

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 7/12/2011 2:26 PM (GMT -6)   
First of all, I know how crazy the leaking can make you, I felt the same way. Like it's completely chaotic and ot of control and you can't connect to life anymore.
You will get it under control I just don't understand why doctors and nurses aren't being more accomodating.
People have leaks for differen reasons and sometimes a combination of them. You just need to calm down and figure out what's going on.
It sounds like you started having leaks when your stoma began to shrink. It starts shrinking at some point after leaving the hospital and will keep changing shape and size for maybe 8 weeks. Someone correct me if it's less. So maybe you are utting too big a hole? It needs to fit almost exactly around the stoma withut only about 2 mm of space in between. That space should be filled with an Eakin ring. I hope you can get them or that you can afford them. Do you have stoma nurse who comes? She needs to bring you some protective wipes and stoma powder, because you have to get your skin healed before the bag will stick properly. It really may not stay irritated
I was having leakages because my stool got so thick that it would stay on top of the stoma, not fall into the bag, and when more stool came out, the stuff had no where to go except sideways and between the seal and my skin. Between the 4th and 7th week after surgery, it could happen about 2-3 times a day. I was cmpletely freaked out.
Call the hospital and have a stoma nurse sent over. Call or write emails to hollister and coloplast and ask them to send you samples of bags (the ones that were working). They are free, and each company sent me about 10 bags. The nurse will help you figure out if you need a differen system.
It will get pbetter, I promise.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/12/2011 3:20 PM (GMT -6)   
I'm so sorry. That sounds horrible. Is there any way you can get an ostomy nurse to see you asap? You are in a crisis, both with your skin and with your lack of supplies. I don't understand why your doctor is just telling you to be strong, rather than finding some immediate and practical help for you.

Do you have anyone helping you? A parent or friend etc? You need help, asap, and having an advocate who is not in the same crisis that you are might help you get it faster.

Definitely call the companies for samples and see if you can get a hospital to give you some supplies. You could try just showing up at the ER if the hospital you had your surgery at is far away. This isn't 1940, you shouldn't have to be improvising a pouch substitute (I've read about how people used to use things like hot water bottles and tuna fish cans).

I agree that the problems could be caused by your stoma shrinking. Have you been measuring before you cut? I found out my stoma was oval, and I didn't realize it .... it's hard to see looking in the mirror.

I had leaking problems at about the same time after my surgery. My nurse switched me to a convex wafer, and that, along with cutting the wafer right, pretty much fixed the problem. Have you put on weight? If your belly is a bit soft or round, or if your stoma is short, a convex wafer might help. You could ask for samples.

You do need something to help your skin heal. It's much better if a nurse can look at it. Your skin needs to be treated and then you need to get the stool off of it, so it doesn't keep getting worse.


Thinking of you. Hope you get some help and some relief soon.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/12/2011 6:25 PM (GMT -6)   
I had a similar problem last fall. It was a combination of my stoma shrinking after surgery and me gaining weight. I ended up seeing my stoma nurse and then she suggested me getting a convex wafer, and that really helped. You need to push to see a wound/ostomy care nurse. If you can't find one, your surgeon should be able to tell you how to get in touch with one. That is completely ridiculous that your surgeon is so casual about this.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 7/12/2011 7:49 PM (GMT -6)   
I agree with the others, after 3 weeks i started leaking, switched to convex and it's all good now! def call for free samples! I called edgepark vs. all the different companies and they contacted the main 3 and had them all send me samples free, I got them within 4 days
DX 2/10 UP. DX 07/10 UC. Pancolitis. tried: Canasa, Asacol, Bentyl, Imodium, Imuran, Prednisone, Flagyl, Cipro, Remicade, Codeine, Tramadol, Xanax, Morphine, Vicodin, Prozac, ~ nothing worked. 1st surgery 6/8/11! 2 more to go!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 7/12/2011 7:50 PM (GMT -6)   
     I am in total agreement with the above posts.   You need a GOOD ostomy nurse ASAP.  They should have assigned you one while you were in the hospital.  My ostomy nurse gave me his cell phone number and told me to call any time I have a problem. 
     What type of appliance are you using?  They gave me Hollister in the hospital but I had a problem with two of them bursting.  I switched to the Coloplast Sensura one piece.  My ostomy nurse recommended them and I love them!  For a few months after surgery I did have some skin irritation under the wafer.  My surgeon suggested I leave the wafer on a week if possible.  I just rinse my bag out with water, while still attached, and place about a capful of 3% hydrogen peroxide into it and that sure helps alleviate the odor.  Since my skin has long since healed, I change the appliance twice a week.
     Things will get better.  It took me about six months to feel like myself.  about a month post op (I have a permanent ileostomy and my surgeon left the anus opened but the rectum and colon are removed), I developed a hematoma inside the anus.  The surgeon had to drain it at my first post op office visit smhair !  Talk about pain...yikes!  Then I was on a regimen of antibiotics.  A few weeks after that, I was hospitalized for dehydration.  It's been rough but it DOES get better.  My surgery was June 28th, 2010.  The surgeon told me that in one year I would feel like a new woman....and I thought....ugh..one year?  But here it is, and he was right.  I'll keep  you in my prayers.

Serenitee
Regular Member


Date Joined Apr 2011
Total Posts : 463
   Posted 7/13/2011 6:55 PM (GMT -6)   
Gribby,

Hello Sweetie, this is Serenitee. I am so, so sorry you are having problems with leaking. I had my surgery in May and I did fine while in the hospital and my Ostomy Nurse was helping me. I started leaking a couple weeks after and my skin was on fire like yours. And once your skin gets irritated its hard to get it under control. Kind of a vicious cycle.

I would suggest definitely getting a hold of your Ostomy Nurse as she will be able to assist you and help you work thru this. That is what they are there for, even if a year has passed they are still to work with you if you have any problems.

Praying for you. Things will get better.
Your Healingwell Friend,
Serenitee

Loop ileostomy, Pelvic & bladder trauma and dysfunction, 2-bladder lifts, colon & bladder fell out of my body, Abdominal hysterectomy, C-section, Ruptured appendix, tumor removed on head...these are just a few of my surgeries.
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