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hey out there-i am a 39 yr old female,who's had crohn's for over 23 yrs-in 2004 they removed my rectum and colon and now have a permanant illesotomy. here is my question...it seems like whatever food i eat,is barely digesting through my bag-everything i eat stays in for days,and my short list of foods that really bothered my bag,like(lettuce,nuts of course,fruit w/skin) now it seems that is has included:chicken of any kind,meat of any kind. fish,mayonaisse,i can't drink soda without it creating massive foam in my bag-

i've been on TPN on and off for many yrs,and it looks like i may have to have it again only permantly-any suggestions on food that won't hurt coming out of my stoma(sorry,gross) or the fact that every time i eat-even if it's just a couple pretezels-the stool never stops coming out,and usually leaks under the bag-

thanks

 Reply posted for roklegend.

Hey Roklegend,

I have to say that is great advice from everyone on here.  I have had Crohns Disease for 24 years, I amd 45 now.  It was 2003 and on that I got clobberd by the Crohns, lots of operations and so and so on...  In February of 09 It was in my best interest to get a colostomy and I am so glad I did.  I have about 5 feet of colon left and my rectum was removed.  Im sure by now you have addressed alot of the problems you were having, I think your post was last January.  Just be really carfull of getting a blockage,  eating foods such as hamburger or ruffage, steak and eating to fast can cause havok.   I was really constipated for 3 days, that being pretty tough to do with so little colon.  The pain got so bad, I went to the ER and was in the hospital for 5 days due to there was a Crohns flar up that had caused the blockage in the gi tract, so all the food was just building up inside.  With the leakage, that really is the big annoying problem to say the least for all ostomates.  All I can say is to let your GI doctor know everything, especially if the poop is really watery or is reluctant to come out.   And yeah, same here, it stinks!, to say the least when it happens in the middle of the night.  Also, its a really good idea to replace the bag before going to bed even if its only partially full.   I have found the Hollister products to be the best, although there the only ones I have used to.  Thats a great idea, putting the paste near ware the leakage usually happens?!!  I really hope your doctor has found out about the problems you have been haveing with the pain from the stoma.  The United Ostomy Association of America is the best place to go to for ostomy advice.  Its www.ostomy.org/  Also, make sure to use those skin wipes that get the old sickey residue so the new wafer and o ring will stick on the skin much better.  I hope all is well you and everything, there was alot of good advice on this sight I thought.  Wish you all the best!

Andrew

 Reply posted for roklegend.

Those Eakins Seals can be stacked to fit your uneven area.  The seals worked for me.  Prior to the seals I had serious leakage issues.  After seals I had no problems, although the stress of the possibility remains.

 Reply posted for roklegend.

hi, my name is tommy and i had a terriable time getting use to the bags they suggested. i started looking through the ConvaTec book and made up my own pouch. i use the sur-fit Natura high output drainable pouch. i like them cause you can not see through them and they are easy to keep clean and very easy to drain. you can order them from edgepark(1-800-321-0591) ref no. 401557 and they match the flexible waffer(45mm) ref no.413166 for easy fit. you'll only have to cut the hole to fit your stoma, very easy. Hope this helps!

 Reply posted for roklegend.

i can understand about the dating scene.  makes it a little difficult when they find out about the stoma.  i also looked up the web site for the walk near my area, and think i will go this year to see what is out there.  and to find people to take face to face about it.  right now this is about the only communication i have with other about this

your welcome for the info and thanks for your.

 Reply posted for eneidich.

hey eneidech-

thanks for your reply-i do use holister barrier rings that i put around my stoma on the wafer that goes against my skin,my because my skin is so uneven around the stoma,even the rings don't seem to help-it also doesn't help,that everything i eat,reom pretezels to a hamburger or chicken,really hurts as it's coming out of my stoma-i'm havng an illeoctomy,like an endosocopy,only they actually go in thru the stoma,just to see if there is anything there causing hte food to pass that quickly-i mean,even as i'm taking a bie of whatever-it's already coming out,and again,becasue my skin is uneven,the rings can't seem to hold the liquid stool in the bag w/out leaking-i ahve tried the belt in the pat,maybe i will try again-thanks so much for your reply-glad to hear ur doing well-please keep in touch-i'm always looking to talk with people that know exactely how i feel-i mean my family and friends try to understand,but unless u have one,there is no way you an understand what it's like-or even what it takes out of you-so thans again..............

if you ever need to talk privately,email me and i will send you my personal email-just to keep in touch

 Reply posted for roklegend.

i have an illeostomy for about a year now and for 11 months out of that year i lived in agony. i couldnt go more than a day or two without my bag leaking and ruining my clothing. i couldnt sleep thru the night bc i would wake up soaked in *** . it caused me so much stress until i finally went to see an ostomy nurse who told me to put the eaken ring right around the stoma and a different kind of wafer (hollister 14904). she also gave me a belt that clips to the wafer to keep it tighter.

it has really changed my life. i can go a few days before changing it and i can sleep thru the night. i also have a constant output of stool no matter what i eat and i often see my food in the bag. i cant seem to control that but at least i can control the leaking.

 Reply posted for vortex7435.

thanks for the help-i have tried the paste-doesn't seem to work-right now,my best best is the barrier rings by holister. maybe i can try the rings and some paste around the wafer......thanks for the advice-i'm always looking for someone around my age that can understand.now if i can only work on my dating scene-it's very hard to find someone that can really understand this disease and what it entails-but thanks for the advice-please keep in touch and let me know how ur doing

thanks

 Reply posted for BWickerham.

I have good luck with Hollister products and eakin seals.  I rarely have any leaks.  I would try a paste to fill in where you are having leaks.  I also recommend trying a Nu Hope ostomy belt.

 Reply posted for roklegend.

Hey there. I've had crohns  for over ten years and i am 29 now.  Just got my permanent stoma back in May of 2010 and been doing good. For my bag I use stoma adhesive paste that i put around the inner circle of the waffer and it seems to really help with leaking.  I would say that 50% of my stool can be liquid with no leaks.  I use the convatec bags.

 Reply posted for roklegend.

Sure!  I'm 35 now.  I was diagnosed with Crohn's when I was 18.  I live in Wisconsin, but was initially diagnosed in Frankfurt Germany. I've actually had the pouch for about 7 years...the 5 years reference was the time since my last surgery...I blurred the line there a little bit.  My qualify of life is very normal, but the first 2 years after the surgery did have its ups and downs. Thankfully, I've been in remission since the last surgery, but up until that time I was having a lot of difficulty with fistula, blockages, and perforations.   

 Reply posted for BWickerham.

thanks for responding-yes,i have heard of eakin seals-they do not work for me-although i do use barrier rings that i fit around the wafer from hollister that do stick to my skin,however,my skin is also uneven around my stoma,and the stool because it's liquid,seems to find it's way under the seal and then leak in what i call little craters in my skin.

thanks for the advice though.i'm wondering,you said you had the bag for 5 yrs now,can i ask how old you are,and where you are from? do you have any issues w/your bag,or are you able to lead a fairly "normal" life? 

 Reply posted for roklegend.

I'm not sure that I can help with the foods portion of your problems.  I've has a permanent ileostomy for about 5 years now and and first it seemed as though everything processed rather quickly, however in time the process slowed down. 

As far as having leakage, my surgery site is somewhat uneven from an old scar near the stoma. I use Eakin around the edge of my wafer to even things out and form a better seal.  Have you ever heard of or tried Eakin?