Ileostomy Help, Please

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sentrase
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/4/2007 1:51 PM (GMT -7)   
     Hi! My grandpa-in-law, Al, just had an Ileostomy. He's having a little trouble so I've come here to ask for your help. Please excuse the way I try to explain everything - I've never even heard of an Ileostomy before now so I'm very unknowledgeable about the medical terms.
Al has a problem with the seal to his pouch. It doesn't stay totally sealed when he sits down. The rubber gasket that adheres to his skin doesn't hold a seal. It always leaks on him and has a big mess to clean up. Also, he doesn't have the disposable pouch, but it seems like he does because he's having to change it every day because of the seal, which makes his skin hurt very badly because of the adhesive & having to tear the tape off his skin every day. Also, he's hard of hearing so he can't hear when the clip is sealed because he can't hear the "snap" noise it makes when it's closed properly.
     Does anyone know of any product or SOMETHING that might make Al's life easier? I'd appreciate any help you can offer. Thank you very much! sentrase
 

Country Chic
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 2/4/2007 2:08 PM (GMT -7)   
What brand of bags is he using and are you using any caulk around the hole? The normal bag/flange only needs to be changed every 3 -5 days....there are many products out there to help the 'hold' better, let me know what you're using and maybe I can help you out and let you know what we're using. My email is tdiepenhorst@yahoo.com email me anytime, I check it often!
Take care and God Bless
Fiancee (best friend & soul mate) Diagnosed with UC November 05
Had emergency surgery to remove his colon Dec 6, 2006 at Cleveland Clinic, (in Ohio) that saved his life! (Thanks Dr. Church!) Going to have the J-Pouch March 7th.
 
Remicade and Imuran (75mg 2x/day), Iron & Protonix Asacol, 2  4 (as of 5/15/06) pills 3x a day, Probiotics 1x day, Blood Pressure Meds 2x day.
 
"Life is not measured by the number of
breathes we take, but by the moments that
take our breath away."      - Unknown
 


sentrase
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/4/2007 10:11 PM (GMT -7)   

     I'm not sure what brand of pouch he has but I can find out if it's that important.

     Caulking? You do know I'm talking about the rubber piece that touches your skin, right? I don't think caulking should be used on skin...can it?

     I know it's supposed to last for 2-3 days. That's the point. The seal won't stay sealed because of sweating, & standing/sitting up.
Thank you for helping me. I appreciate it very much. I'll have to wait until tomorrow to find out the brand of pouch, then I'll email you when I find out. Thanks again! Take care.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 2/6/2007 12:01 PM (GMT -7)   
Sentrase, I don't know of any bag design that doesn't require some sort of adhesive like Adapt paste, etc. I can tell you that I was sent home after surgery with the post-op system that they used in the hospital and within a month developed some of the same troubles your grandfather is having. It turned out I actually needed a "convex" 2-piece system. The fit is much better and the only time I had a problem with it was when I accidently didn't change the whole thing for 4 days instead of 3! Also, my routine is to change the system after wearing it 3 days, the first thing in the morning when my stomas is quite - before drinking or eating anything. I also found out about Optix tape from my ostomy nurse. She has a friend who lives in Florida and had problems with persperation loosening the seal. Now I tape around the outside of the seal where it's flat against my skin for a little added security. Also, I never ever use anything but plain water to clean around the stoma area when I change the sytsem - anything else could cause the seal to fail or not seal tight in the first place. My last piece of advise is this - the Adapt paste or whatever adhesive he uses must be of sufficient quantity. A "good bead" around the opening means a healthy amount - don't skimp on the sealer!! Hope this helps - he must be really frustrated with the whole thing.

sentrase
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/6/2007 12:38 PM (GMT -7)   

     Is it just a matter of finding the bag that fits right for YOU? Like every person's shape & build is different, & every bag is a little different so each bag will fit differently for each individual? Is that the secret? Or is it the seal?

     I'd like to thank you for being so kind. Like I said, this is so new to me & I have NO idea what's going on. It's comforting to know that there are such caring people out there to help me. So thank you very much.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 2/6/2007 12:58 PM (GMT -7)   
Sentrase, now you've got it! It's both the seal and the bag. They sent me home with a flat bag and what I really needed was a convex bag because there's a slight indentation around my stoma. In addition, my stoma isn't a circle - it's an oval. Therefore, I have to cut the opening myself. Some people prefer the seal that comes in a kind of coiled rope - like weather stripping comes for a window or door. I prefer the Adapt paste but I have to resist the urge to conserve the paste when I put it on - even if it seeps up around the stoma or even covers the stoma opening, have no fear, it won't impede the function of the stoma. The bags per say aren't shaped much different but you can get them in different lengths, one or two piece systems. The one piece adheres directly to the skin and is flat, the convex system comes only in the two piece system and doesn't fit completely flat but it's not like it sticks out obtrusively or anything. If your grandfather isn't seeing an ostomy nurse he might benefit greatly from a couple of visits. I was told to visit at least once a year but I usually see mine every time I see my doctor. She's so low-key, knowledgealbe and comforting I just feel better after I talk to her. I get my supplies from edgepark.com If you don't have a supply catalog go to their website to see all the products available. Also, if you grandfather gets connected up with an ostomy nurse - and there may well be one affiliated with the hospital he had his surgery at - she may give him a couple of new systems and additional lessons on how to put the whole thing on in a way that will give him more security.

sentrase
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/6/2007 5:36 PM (GMT -7)   
Wow! I sure am glad I came to this forum. I feel sooooo much better having "talked" with you. I haven't told my grandpa any of this yet. I'm going to print it all up and take it to his house, along with pictures of products, etc. of the products I find on the internet.
No, I don't think he has an ostomy nurse. He had his surgery in Oregon & it was an excellent hospital. But we live in California and (as much as I dislike having to admit this) we don't have trustworthy people in the medical field here. We pretty much had to have gone to medical school so we can stop these people from doing uneccessary surgeries, etc. That's why we're doing the research ourselves.
Thank you so very much. I really appreciate your help. Take care!

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 629
   Posted 2/6/2007 5:51 PM (GMT -7)   
if he just had an ileostomy he should be having an et nurse coming to his house 2-3x a week, for as long as he needs it. their job is to make sure everything is going smoothly and to figure out which products work best for him. and since he just had the surgery, the nurses need to keep an eye on the stoma too, to make sure everything is healing as it should be, no infection etc. i'd get a nurse to come look at him, they'll know right away what the issue is and fix him up! good luck

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


sentrase
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/6/2007 9:37 PM (GMT -7)   
     You know what? You're right! He does have a nurse coming to his house. I'm sorry - I forgot about that. Thank you for your concern. Take care!

tlh45
New Member


Date Joined Jan 2007
Total Posts : 3
   Posted 2/6/2007 10:58 PM (GMT -7)   
Hi, Sentrase
As an Ileostomate of 3 years, I've had my fair share of problems with wafers, leakage, messes and much more. I've tried several systems and the one I like the most is the Surfit Nutura two piece drainable pouch with filter from Convatec. I find with a two piece system it gives you more flexiblity. I only change my whole system every 7 days or so with pouch changing every 2 or 3 days. By that I mean, popping off the used pouch and popping a new one on without changing the wafer. It saves on alot of wear -n- tear with the skin. For irritation, I use a Stomahesive powder. This may help with irritated skin around the stoma. For added security use a Stomahesive paste which you can get through Convatec. I use a 12" drainable pouch with filter and find that the size is just right and with the filter it helps with gas ballooning the pouch. This is another reason I use this system. Your grandfather will find that certain foods will cause gas and find his pouch ballooning. With a filter it not only helps with releasing the gas but controls odor. Go to Convatec's website and ask for a free sample. They're always sending me free stuff. Also, try using an Ostomy belt. It snaps on to the wafer, adjust to fit securely (without being uncomfortable) which may keep the wafer pressed against his skin better. I wear mine all the time and don't even know I have it on anymore. My wafers stay on longer, no more leakages or messes to deal with. The longer I have my ostomy, the freer I feel. It will get easier as you go along however, make sure his nurse keeps track of his stoma size. Mine shrank down to 3/4" so your flange size will vary. Sometimes if your stoma and wafer don't match (one is larger than the other) you will have leakage. Post-op stoma sizes are generally larger but once the swelling goes down so will the stoma size. I started cutting the opening of my wafer to fit my stoma but since my stoma has shrunk, I use a pre-cut wafer and simply love it. I could go on and on but this should help for now. Any more info you would like, you can email me at taharb@comcast.net...toodles, tlh45


:-) :-)

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 2/7/2007 1:58 AM (GMT -7)   
Sentrase said...
 Is it just a matter of finding the bag that fits right for YOU? Like every person's shape & build is different, & every bag is a little different so each bag will fit differently for each individual? Is that the secret? Or is it the seal?
Absolutely!  That is why there are so many different brands and types out there. Ring around the various manufacturers or go to their websites and get as many free samples for Al as you can.
 
The main manufacturer's sites are
 
 
you can order samples directly from the websites.
 

Also, you need to understand that paste is NOT an adhesive as the name implies - it's more a caulking agent used to fill in any gaps between your skin and the wafer and stoma. It WILL NOT make a bag stick any better. Whether a person uses paste or not is entirely up to them - some people need it, others don't, it's really a matter of experimentation (as are most ostomy matters).  Eakin Seals, Coloplast strips and Hollister strips all do the same job as the paste but, in my opinion, are much better in that they don't contain alcohol like paste does (which can sting sore skin - ouch!) and have healing properties in them for damaged skin.

If Al's stoma is flush to the skin (ie doesn't stick out) then convexity may be a big help to him. Convex appliances come in both one and two piece bags or you can buy reusable convex inserts from certain companies to use with bags that have flat wafers. Convexity will help push the skin around the stoma in and so help the stoma protrude a bit more and hopefully make all the stool go into the bag and not under the wafer.

When applying his wafer, make sure is skin is dry!  Any moisture on it and it will compromise the seal. A belt may also help keep his appliance on. Another tip is to warm the wafer up between the palms of your hands before applying it. The warmth helps it stick better. Others prefer to use a hairdryer on it's lowest setting to warm it up once it's on the skin. Al will work out which way is best for him with time.

In the first few months, his stoma will shrink in size (initially, it's swollen due to the trauma of surgery). Therefore, it is crucial that you measure his stoma each time his bag is changed so you can be sure that you're cutting the wafer to the correct size.

To a lot of people, less is more. The less things you use on your skin beforehand, ie skin prep, barrier wipes, etc, the less chance you have of something stopping your wafer from sticking. This may sound strange since all that stuff is supposed to help but, believe me, a lot of people have found that they get better wear time by not using anything under the wafer.

If Al rinses his appliance when emptying with a squirt bottle, etc, tell him to try to make sure that the water doesn't get up to the wafer part. If it does, the water can erode the wafer and limit wear time.

Remember, the average (not normal - average) wear time for appliances is 3 - 4 days although some people are luckier and get a longer wear time than this, others are not so lucky and get a shorter weartime. Weartime is a very individual thing.

It really is a matter of experimentation. Hopefully, sooner than later, you will hit on a combination that works for Al. Everyone is different, which is why there are so many different products out there to try.

Hope this helps.


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!

Post Edited (Shaz032) : 2/7/2007 2:01:39 AM (GMT-7)


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 2/7/2007 7:48 AM (GMT -7)   
Hi Shaz: well, I learned something new here - I thought the paste was an adhesive and an additional seal!  Thank you!  I also use the powder to prevent skin irritation.  As to the convex system vs. flat - my stoma does stick out and the flat system just didn't do it for me.  The convex works much better.  My stoma nurse told me that some people do extend their wear time beyond the 3 days recommended but that it was "risky" - well that's all I needed to hear - I figure there's enough I can't control with this disease so I wasn't going to risk anything.  The upshot I guess is that it's all individual as to what works.  Unfortunately, another one those life situations where there's no hard and fast answers. 

sentrase
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/7/2007 11:05 PM (GMT -7)   
I think I have enough information for my grandpa. I'm printing all of the suggestions, the products and websites you suggested to me and taking all of it over to him.
I just wanted to thank all of you: Country Chic, Cleo 35, awesomeame, tlh45 and Shaz. All of you have been extremely helpful and I thank you so very much for all your kindness. I wish all of you the best of luck and God bless you. Take care! Sentrase

Country Chic
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 2/8/2007 7:22 AM (GMT -7)   
Sentrase.....My email is on here so if you have any questions on anything feel free to email anytime...My fiancee is the one with the stoma and going to have the J-Pouch next month.....so I can be of support to you especially from the other end of the spectrum as well. We've been through a lot in the short time he's been diagnosed so know that you're not alone and we're always here to help! Good luck and God Bless. Keep us posted on how your grandpa is doing and YOU as well.
Fiancee (best friend & soul mate) Diagnosed with UC November 05
Had emergency surgery to remove his colon Dec 6, 2006 at Cleveland Clinic, (in Ohio) that saved his life! (Thanks Dr. Church!) Going to have the J-Pouch March 7th.
 
Remicade and Imuran (75mg 2x/day), Iron & Protonix Asacol, 2  4 (as of 5/15/06) pills 3x a day, Probiotics 1x day, Blood Pressure Meds 2x day.
 
"Life is not measured by the number of
breathes we take, but by the moments that
take our breath away."      - Unknown
 


sentrase
New Member


Date Joined Feb 2007
Total Posts : 7
   Posted 2/8/2007 7:30 AM (GMT -7)   
Thank you very much. I'm not the one who is caring for him - his daughter is, so I'm okay. But thank you very much for your concern and I will definitely hold on to your email address. Thank you!
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