Help-New Ileostomy

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J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 10/13/2008 7:46 PM (GMT -6)   
I  have been reading this forum for a week or so and have found very useful information. My 20 year old son is developmentally delayed and is about 3 1/2 weeks post op from ileostomy and Ladd's procedure (his small intestines needed "re-arranged").
 
First let me say that it is unbelievable how much better he is acting and feeling already after unsuccessfully being treated for UC for about a year. He is not able to help in his care at all and also has a very, very high pain tolerance. The GI doc said when he had his last colonoscopy (1 week prior to surgery) that his colon was one of the most diseased he had seen in the 10 years he has been practicing. He also had 2 very large polyps that he did not feel comfortable even completing the scope. Thankfully, everything was benign and pathology showed only UC.
 
Now here is my (our) problem. I am a RN, but have no previous experience with ostomies. Since we have been home (about a week and a half) his wafer has to be changed everyday and on occasion 2x a day. He awakes every morning with leakage. about the only thing I have figured out so far is that he needs a vented bag (he has alot of gas). I think the problem is that he sleeps on his stomach and has alot of output at night. He also wears a diaper for urinary incotinence, however at night I diaper him in a manner that I don't think much urine gets on the appliance. Next to setting my alarm at night to get up and empty his bag (I hate waking him from a sound sleep) I don't know what to do. I have talked to the ostomy RN's at the hosptial and also have called a couple of the companies and talked to their ostomy RN's. I have several samples of various products on the way. What I don't understand that all of the ostomy RN say don't use the paste. Why is this?? I did try it one night and it seemed like it did hold better except in one spot, maybe I didn't use enough? I have also been using the hairdryer when applying. Unfortunately, I work fulltime and currently I am going in to work late a couple days a week, so I can be here in the morning so I can experiment with different changes. (His caregiver has no previous experience with ostomies either) I must admit I am reluctant to apply too much pressure or scrub really hard since I am afraid I will hurt him and he can't tell me. I have read all the recommendations given in another post, but must admit don't totally understand about the Eakin rings and how they work. Currently we are using Hollister convex 2 piece vented.  
 
I'm sorry this is so long, but I am getting really frustrated. I am so happy he is once again healthy and really want to get this appliance problem figured out.

Post Edited (J's Mom) : 10/13/2008 8:02:49 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/13/2008 9:24 PM (GMT -6)   
wow sorry to hear you are having so much trouble! my husband is an RN too, and he was pretty much clueless about my ostomy too.
i dont think the problem is that he sleeps on his stomach, i sleep on my stomach and although i have had a few problems, user error, lol, i generally have no problem. You may not being doing this now, but it would be a good idea to have him sleep on a waterproof pad.
If you are still using the skin prep pads that may be part of the problem. When i was using those, if my flange got even the slightest bit wet, one time it happened from not being comeptly dry after getting out of hte shower, the bag would come right off. and the wetness from the diaper may be enough to lossen it.
Try stoppign those.
i don't know why they say don't use the paste, unless he has some kind of thing wrong iwth his skin that they think would irrate it. I think that the paste helps. You said you have already been trying the hair dryer, are you smoothing the flange down as you use the hair dryer (i sound bossy, i am sorry) this is what i do, i put the flange on, laying down, i think it does better that way, then i use my hands and rub around the flange for a minute or two, then get the hair dryer, hold it on there while rubbign it with my hands, sort of like smoothing it down.
Is it possible that he is messign with it? i had that problem at first, i was always scratching it loose. Or youmay have the hole for the stoma cut too big, it will change shape ALOT in the first. I always cut mine just a tiny bit smaller than the little guide thingy calls for.

I am sorry if i came across being all bossy and what not!
i hope things end up better for you

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/13/2008 9:36 PM (GMT -6)   
The Eakin rings are like paste, they help the wafer stick on better. But instead of a paste they're kind of like silly putty or clay in the shape of a ring. You can stretch/mold them to the shape that you cut the wafer and stick it around the hole. I've tried them with the Hollister 2 piece and it didn't seem to help me all that much. I've had my ileostomy for 2.5 months and I'm still having problems with leaks because my wafer doesn't stick to my skin all the way on one side. I think the put my stoma too close to my bellybutton so the wafer can't get a good enough grip on that side of my stomach. I use one of those belts you can clip onto the flange and that helps the part that does stick stay stuck. I've experimented with a bunch of different products, but ended up going back to the Hollister one piece convex bags they sent me home with. Also, if you're changing his bag that often you might want to use skin barrier wipes to avoid irritation.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


Crohned
Regular Member


Date Joined Jan 2007
Total Posts : 86
   Posted 10/13/2008 11:17 PM (GMT -6)   
He may need a larger bag for nightime if he has higher output/gas during this time.
Diagnosed Crohn's/Colitis 2003.  
Subtotal Colectomy w/ Ileostomy May 16, 2007.
I'm off the meds!!  
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/14/2008 12:25 AM (GMT -6)   
spongebob-are you still using theskin barrier wipes? those are what i was talkign about that were decreasing my wear time so much.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/14/2008 2:50 AM (GMT -6)   
JsMom,

I'm glad your son is feeling better. Here are a couple of tips you can try to minimize leaks:

1. Shave the hair on his stomach around his stoma
2. Get a wafer that is used for colostomy owners, since it has a larger adhesive area
3. Cut the hole to fit perfectly and use a small amount of Stomahesive paste around the opening in the wafer
4. Do not use any type of skin prep and make sure the skin is completely dry before applying the wafer
5. Press down on the wafer for about a minute after applying it
6. Get the largest bags available
7. If he has to sleep on his stomach, place a pillow on his right side, so the bag has some room to expand
8. If his bag is full in the middle of the night, empty it into a container, so he doesn't have to get out of bed

Good luck!! :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 10/14/2008 7:08 PM (GMT -6)   
Thanks for all the suggestions. And no summerstorm you did not sound bossy...I need all the help I can get.

We saw the surgeon and ostomy RN's today and they gave me some one piece Hollisters to try. I just put one on him (the 2 piece I put on this AM was leaking). Unfortunately, it is not vented, so it may get too bloated overnight. Since I am not the one wearing them I have no idea, but it looks like it would be more comfortable and plyable. Keep in mind that my son is 20 years old, but only weighs 85lbs and is under 5 ft tall, so he is very small and skinny. I also got some different Coloplast and Convatec samples in the mail today as well. So I guess I will be busy for awhile trying to figure out what works.

By the way, I mentioned using the paste to the ostomy RN's today and they had a hard time understanding what I was telling them about putting it around the opening. My husband finally got them to understand. I have a feeling they could learn alot by reading this forum!!

Thanks again for the ideas.

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/14/2008 7:41 PM (GMT -6)   
summer, I use the skin prep every now and then, sometimes my skin just gets so red I feel bad for it. It seems to be doing ok though, no leaks in quite some time. I could probably get almost 7 days out of my bag as long as I wear the belt. Unfortunately I have some small holes underneath the tape that I have to cover with a felt type material and it dissolves when it gets too wet. Seems like the holes have pus coming out of them because it's starting to itch and I've only had this bag on for 4 days.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 10/14/2008 8:05 PM (GMT -6)   
You've gotten some great responses! My question would be: does he have any "low" spots around the stoma? If he does, you may have to build up the area with one of the "seals" out there...I personally prefer the Eakin Seal to paste. I found that not having to wait that 30 seconds for the paste to "dry" a little helps me keep things sealed properly. I live by "less is more" so I don't use anything but warm water and liquid dial soap, wash/rinse/dry/apply! Finding the right product will be key to keeping the skin intact...changing everyday can take its toll.

Let us know how things go and what you've found to work best!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/14/2008 8:15 PM (GMT -6)   
what kind of soap are you using to clean him? i didn't even think to ask that, there are lots of soaps that can caue problems, oen of the best to use is just plain old yellow dial.

Angela101
Regular Member


Date Joined Mar 2005
Total Posts : 79
   Posted 10/14/2008 8:36 PM (GMT -6)   
Hey J's mom,
sounds like you have your hands full! You must have a lot of patience!
   I had troubles with leaking for a while until we figured out that my stoma opening was tilted and faced downwards.
I now use Eakin seals and a convex flange which helps with the leaking.
  As for keeping the flange stuck - you can use surgical tape or I have used bandaids in the past to keep it stuck, especially if it only peels loose in one area.
 
   I have also found that the 2 piece system seems to work better when I am gassy because I can open the pouch from the top and 'burp' it and get rid of the gas.  
 
Here is a link so you can see what the eakin seals look like.
 
good luck!
Dx/ed October 2003,
April 2004 - Surgery - 2ft of small bowel removed
Feb 2007 - Surgery again and a temporary ileostomy
Present - on Remicade waiting for surgery to reverse the ileostomy - Health Care System in Canada sucks - wait list is 6 12+ months.
 
 
 


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 10/14/2008 8:47 PM (GMT -6)   

J's Mom, I noticed you mentioned that you use a hollister convex flange.  Is this because the stoma is flush with his stomach?  The reason I ask is because I had a slightly over anxious stoma nurse in the hospital that I guess wanted to try all the holister freebies she got on me.  My stoma protrudes rather well but she insisted on using a convex waffer on me.  Next day it had pulled the outside edge of the wafer away from the skin.  She also tried using an adapt barrier ring on the next change and yep same thing.  I guess the pressure of the convex part and the adapt ring were forcing the rest of the barrier away from my skin.  Since my stoma protrudes I have found that a regular seal, with no convex works just fine, I get seven days plus out of them which is a big change from one a day in the hospital with the convex or the adapt ring.  If your son's stoma protudes out from his stomach as little as 1/4" there may be no need for a convex appliance.  Just a random thought, but if his stoma is flush then it would probably be best to stick with a convex appliance.

John


Total Colectomy with End Ileostomy May 27th, 2008


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/14/2008 8:52 PM (GMT -6)   
All very good suggestions --- I can't think of anything else at the moment.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/14/2008 10:20 PM (GMT -6)   
slim18996 said...

J's Mom, I noticed you mentioned that you use a hollister convex flange.  Is this because the stoma is flush with his stomach?  The reason I ask is because I had a slightly over anxious stoma nurse in the hospital that I guess wanted to try all the holister freebies she got on me.  My stoma protrudes rather well but she insisted on using a convex waffer on me.  Next day it had pulled the outside edge of the wafer away from the skin.  She also tried using an adapt barrier ring on the next change and yep same thing.  I guess the pressure of the convex part and the adapt ring were forcing the rest of the barrier away from my skin.  Since my stoma protrudes I have found that a regular seal, with no convex works just fine, I get seven days plus out of them which is a big change from one a day in the hospital with the convex or the adapt ring.  If your son's stoma protudes out from his stomach as little as 1/4" there may be no need for a convex appliance.  Just a random thought, but if his stoma is flush then it would probably be best to stick with a convex appliance.

John

That's weird because my stoma is pretty long and the regular wafers leak the most. What you're describing with the outside edge pulling away is exactly what is happening to me with the convex wafer, but as long as I wear the belt the part closest to the stoma stays stuck and I haven't had a problem with leaks this way.
 
Also, what Ohio said about "low parts" is a good suggestion. I have a couple holes underneath the tape of the bag and they cause a pretty big indentation. I had been covering them with a tiny piece of felt my stoma nurse  gave me to avoid irritation from the tape. When the stoma nurse changed my bag though, she used a good chunk of felt and made that area more even. I haven't had a problem with leaks from that side at all since that.


Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 10/15/2008 8:32 PM (GMT -6)   
Woke up again this morning with leakage.Today I tried one of the Convatec Moldable 2 piece. Just put him to bed and so far so good. We'll see in the morning. His stoma has really shrunk over the past week, so I think they should have sent me the medium. His stoma does protrude quite a bit. In fact, everyone at the hospital said  "what a beautiful stoma". Daddy & I got a kick out of that. smilewinkgrin
If this doesn't work I now have some samples of Eakin Rings so that will be next!
 
Once again thanks for all the advise. I have a healthy, happy son again, so this is just a minor setback!

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 10/16/2008 4:40 PM (GMT -6)   
j's mom...

uv gotten great advice, and after a while i just started skimming so forgive me if im repeating n e thing...making sure the area is dry before applying the flange is important. i use alcohol b/c some residu stays on

if ur using adhesive remover to get them off, make sure u use as little as possible, that residue remains as well...

as far as the one pieces are concerned, i would becareful about that because u mention he has high output and gas at night. if hes not at all involved in his own care, he could easily have a blowout if the bag fills with gas, that would b a horrible mess

have u tried the coloplast extended wear wafer? that was suggested to me and it has stayed on the longest , i can go 8 days but i try to change at 5 cuz my skin gets itchy i also find that it moves more easily with my body

eakin seals work wonders for me

and um...i cant think of n e thing else right now...but if i do i'll repost, please keep us posted!
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 10/16/2008 4:41 PM (GMT -6)   
o! keep in mind that the stoma and stomach swelling will continue to go down for up to a month if not more, so dont over buy the larger sized flanges, u will change sizes a few times
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


dnri
New Member


Date Joined Jul 2008
Total Posts : 8
   Posted 10/16/2008 6:19 PM (GMT -6)   

Hi I am a new ostomate and also have major leakage problems.  So far what worked the best is the hollister vented bag and take the eakon ring and mold it around the stoma instead of the flange and try no skin prep. Hold your hand over the flange for a little bit to heat it up.  I am trying the belt next.  My stoma empties more to the right bottom instead of the middle so thats why I have leakage.  It seeps under the eakin and flange.  I am fustrated too!  I was told to live a normal life but how can you when you are afraid of a leak!  I even had a stoma nurse apply one and said that should do it and by the time I got home it was leaking!

Good Luck To All


Total Colectomy 6/30/08
Ileostomy 9/5/08


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/16/2008 8:46 PM (GMT -6)   
make sure the hole you are cutting is small enough. mine does kind of like yours does, and i was having problems with leakage at the bottom also. i started cutting the hole a little smaller and that seemed to help. Another thing that helps me, is to lay down when i put the bag on, i get longer wear when i do that.

Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 10/16/2008 9:10 PM (GMT -6)   
J's Mom: Wow! You're lucky with all the responses you've received. Sometimes, people only get one.

One thing I wanted to share too, is that Coloplast has light convexity, which I use. My stoma protrudes, but since I have a temporary loop ileostomy, I have another opening called a distal lumen. This is flush with my skin. When I first received my "tempoary" ileostomy back in July 2007, I was having problems with leaks for several months and had no idea why. I later found out about about the distal lumen, so I went to a light convexity. There was stool coming through this opening flush with my skin and I was freaking out. I was trying to air dry my skin because it was irritated and nothing would stick to it. The light convexity cleared up the problem instantly. Also, Coloplat's Sensura line is for sensitive skin. I had allergic reactions to Hollister and Convatec, both. Coloplast is a wonderful line. I also use the Eakin Seals. They work well for me too.

Hope all goes well. Eventually you'll have it down to a science. Be strong for yourself and your son. He's lucky to have such a wonderful mom.

Take care! Mary

Post Edited (Ohio43) : 10/16/2008 9:13:15 PM (GMT-6)


J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 10/16/2008 9:12 PM (GMT -6)   
Well, that didn't stay either (Convatec moldable). Put on a one piece with Eakin seal this morning. I really think I should have used the 2 piece cause that one has a vent, so probably will be leaking in the morning again. My only concern with the seal is I'm afraid it is too tight around the stoma??? I put it on the skin side of the flange and molded it even with the hole I cut. When I look at his stoma it looks like the seal is up tight against the stoma. Is that the way it is suppose to look?? I am such a worrier. I didn't use any skin prep this time, washed good with dial soap, rinsed well and made super sure his skin was dry (even though I think I always do).

We are going on our first camping trip this weekend since surgery. I packed all kinds of supplies, hopefully we won't need any!

Let me know if you have any luck dnri. I am sure eventually both of us will find the right "fix".

J's Mom
Regular Member


Date Joined Oct 2008
Total Posts : 109
   Posted 10/16/2008 9:20 PM (GMT -6)   
Ohio43 said...
J's Mom: Wow! You're lucky with all the responses you've received. Sometimes, people only get one.

One thing I wanted to share too, is that Coloplast has light convexity, which I use. My stoma protrudes, but since I have a temporary loop ileostomy, I have another opening called a distal lumen. This is flush with my skin. When I first received my "tempoary" ileostomy back in July 2007, I was having problems with leaks for several months and had no idea why. I later found out about about the distal lumen, so I went to a light convexity. There was stool coming through this opening flush with my skin and I was freaking out. I was trying to air dry my skin because it was irritated and nothing would stick to it. The light convexity cleared up the problem instantly. Also, Coloplat's Sensura line is for sensitive skin. I had allergic reactions to Hollister and Convatec, both. Coloplast is a wonderful line. I also use the Eakin Seals. They work well for me too.

Hope all goes well. Eventually you'll have it down to a science. Be strong for yourself and your son. He's lucky to have such a wonderful mom.

Take care! Mary
 
Thanks for the vote of confidence Mary! My husband and my life revolves around our son. He is such a joy. We had not realized how he had digressed over the past year with the UC, until the past month since having his surgery. My goodness the amount of energy he has now. Always smiling, singing and playing :-)
 
I know we will eventually find the right appliance. It is just very overwhelming at first with so many different types. I do greatly appreciate all the advise and hints.
 
We also live in Ohio. Go Bucks.
 
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