Leaks and bags/pouches

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tazman
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/21/2011 5:32 PM (GMT -6)   
I am new to this, have only had ileostomy since January due to complications from ovarian cancer.  Most of my colon and rectum have been removed.  How do you find the best wafer and pouch to use?  The one I have now was recommended by ostomy nurses when I had my surgery.  I have the two piece system and I get leaks frequently.  I am afraid to go any where in public.  I went back to work part time and have had 2 bad leaks at the office.  I keep extra supplies with me and a change of clothes in my desk.  I worry so much that it is affecting my  quality of life as I never want to go out.  How can I get over this?  Should I change the wafer/Pouch I am using?
 
I am a 57 year old female diagnosed with ovarian cancerr in June 2010.  Tumor caused blocked colon and had emergency surgery and ended up with colostomy that was only temporary.  Had ileostomy done when I had hysterectomy in Jan. 2011.  I am also having trouble with diarrhea and have to empty my bag frequently.  Immodium does not seem to help.  Does anyone eat fresh fruits and veggies?  I am afraid to as I heard these can cause a blockage.  Is that true?

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/21/2011 5:58 PM (GMT -6)   
Hi Tazman, and welcome to the list. You have been through a lot this year, hope things get better. Here are some thoughts:

Are you in touch with an ostomy nurse? It would be good if you had a good one who could take a look and make a different pouch recommendation. I was having leaking problems and my nurse switched me to a convex wafer, due to my soft belly, and it's been much better since.

You can get free samples from your supplier (I use edgepark) or from the companies that make the pouches -- the big companies are hollister, coloplast, and convatec. A lot of people have to try many different things before they find one that works for them.

One thing that helps a lot of people is sure seals from active life products. You can get a sample from the company or from a supplier. These are clear sticky material sort of like saran wrap or the tegaderm they use to hold IVs down. They go around the wafer and help hold it down a bit. If you do have a leak, they can keep it in, so it doesn't get all over everything before you change pouches. Very good for peace of mind.....

I had my surgery in February, and I have started eating cooked veggies, but not really stringy ones like celery or bamboo shoots. I have been eating some fruit too -- not in big quantities, mostly in smoothies. No apple peels and the like....
It's really important to chew well and to drink a lot. Fortunately, I've had no blockages, but you are right to take precautions as a blockage can be serious.

It sounds like you should talk to a gi doctor about the diarrhea.

This list has been great for helping me learn about this new ostomy world. Feel free to ask a lot of questions..... there's a lot of knowledge here. Good luck.
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

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/21/2011 6:19 PM (GMT -6)   
Welcome to the forum tazman smilewinkgrin

Sorry to hear of everything you've been through these last few years sad Leaks can happen, but it can be for many different reasons. Have you gained/lost weight? Does your stoma stick out from your skin or is it flush with it? Do you use convexity? Is your stoma right on your 'crease' where you naturally bend?

If you are not using convexity I would suggest starting with that. A convex wafer is 'cupped' and actually pulls the stoma away from your skin which helps with leaks. You can also try wearing a belt to see if that helps.

As far as diarrhea, do you drink/eat a lot of sugar or artificial sweeteners? Those can cause output to be very liquid. What do you eat during the day?

Hang in there...more will be along to give there 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!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/21/2011 6:46 PM (GMT -6)   
What pouch are you using and how are you applying it? Thatwill help us see I there is anything you can do differently.
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!

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 6/21/2011 7:30 PM (GMT -6)   
So sorry to hear you are struggling with leaks. I did the same thing for a year and felt frustrated and miserable a lot. Have mostly worked through that now and seeing more sunshine and green grass!!

Everyone here has given you good advice. Don't get too down and keep trying different appliances until you find the right one for you.

I still have the occasional bad leak but staying inside won't solve anything. Life is too short for that. You must know that after all you have been through.
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/22/2011 1:29 AM (GMT -6)   
Great advice from everyone! Tazman, hang in there and we will surely be able to come up with a combination that will work. It may be something really simple... details will help us figure out what's going on.

Re: blockages --- everyone is different. I have had a couple of partial ones not requiring surgical intervention. So I have learned what works for ME and what doesn't. And even then, I can be caught totally off guard sometimes with a kink that I have no control over. :) I do eat fresh and cooked fruit and veggies.... with my meals and with lots of fluids w/o peels, seeds, etc. Some folks don't have any worries with any quanity.

Re: output -- sugar, artificial sweeteners, sometimes caffeine, rich foods high in fat content (ie cream, butter,etc.) can be triggers too. Try adding baked or mashed potatoes, applesauce, oatmeal and see what your output is like after eating those types of foods.

You have overcome so much already. This, too, has a solution.
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS March 2008 - taking one day at a time, enjoying our time together.

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted 6/22/2011 8:29 AM (GMT -6)   
Hello Tazman!

I have ovarian cancer also. I had surgery on March 25th, and thought it was just going to be a colectomy and ileostomy...woke up to find out I had a hysterectomy and ovarian cancer. I am doing well. I LOVE having a bag! It has improved my quality of life so much! I had ulcerative colitis. Wish I had done it years ago. I am taking chemo now, am halfway through!! I feel so good, no bad side effects from cancer, except hair loss!

How are you doing with your ovarian cancer? Seems we have a lot in common...would love to discuss more in depth with you.

Have a wonderful day

tazman
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/22/2011 2:28 PM (GMT -6)   

Daffodil,

I did not have colitis so can't relate to what you went through with that.  For the cancer, I had 6 treatments of taxol/carboplatin in 2010 with no bad side affects except for hair loss and neuropathy (nerve pain) in my feet.  After surgery in January, I had two more treatments and lost my hair for a second time and the neuropathy is still bad.  I have to take neurotin for the pain.  My last CT Scan was CLEAN, no sign of cancer.  I will get my CA125 checked every 2 months for awhile.  The ileostomy in a way has been more trouble than the cancer.  I would love to chat more also as we do have a lot in common.


tazman
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/22/2011 2:41 PM (GMT -6)   
To everyone who replied:
 
Thank you so much for the suggestions.  I use a hollister 2 piece system, not a convex one.  I put paste around the inside of the wafer before applying it.  My stoma is on my right side, just under the waist line and sticks out from my skin.  I have lost weight since my surgery and wondered if that would make a difference or no and it seems like it would.  I had surgery about an hour away from home so it is hard to go see the ostomy nurses very often but they are great.  I called them about the diarrhea and they just told me to take immodium.  I take 8 a day and wondered how long I could do this for.
 
Currently I eat an egg and toast a couple of mornings a week for breakfast and eat cereal other days (rice krispies and cheerios).  I drink apple juice or orange juice (no pulp).  I have yogurt or cheese as snacks as well as crackers and peanut butter.  Sometimes I have a peeled apple.  For lunch I have tuna fish or turkey, sometimes rolled up with cheeses, sometimes as a sandwich.
 
For dinner I eat most any kind of protein but mostly chicken or fish.  I eat butternut squash, cooked broccoli, sweet potatoes and regular potates, usually baked.  I feel like I am not getting enought vitamins and nutrients.  I cannot eat a lot of greens as I take coumadin and multi-vitamins contain too much vitamin K.  I would be interested in what diets worked for other people.
 
I am very interested in the Sure Seals and will look them up, especially since we have a pool and I was worried about swimming.
 
I hope I have been specific enough for everyone who asked questions.  Thank you all so much.  This sounds like a great place with wonderful, caring people and I feel better already knowing there are others out there going through this.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/22/2011 3:57 PM (GMT -6)   
taz,

I use convatec stomahesive flanges and convatec bags that roll up and velcro, they even have a security flap that then velcros around the end of the rolled up and velcro'd bag. Lots of velcro security here. I use an eaken seal under the flange right around my stoma. Have (so far anyway) never had a leak. It has been 4 years for me. Try some convatec products. Hollister never worked for me. Also very sorry to hear of all you've gone through. Best wishes. Rosemary

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/22/2011 6:37 PM (GMT -6)   
I'm on coumadin too, for a blood clot they found on the CT I had for an abscess a week after surgery. I take multivitamins and eat spinach every day.... the issue w/vitamin K is that you have to have the same amount every day. After surgery, I wasn't having any vit K, and I was on 5 mg or less of coumadin a day. After a while, when it became OK to eat green veggies from the ostomy point of view, I started eating the same amount of spinach every day. My INR was low for about five weeks in a row, but they finally got me up to a dose that works (10 mg every day).

It's definitely a pain, and hard to plan for (i.e. if I'm eating dinner out I have to either decide to not have leafy greens or to be sure to eat them), but I did feel a lot better getting the veggies in my diet. Do you have a nurse you check in with re the coumadin?

I was excited when I finally was allowed to go two weeks and then 3 between INR tests.... I'll be glad when I'm done w/it in Sept....

Are you on coumadin indefinitely or will you be able to get off of it?

I also like the eakins under my wafer. I prefer the one piece systems, at least for now -- just lighter, and I had a leak early on with the two piece not being attached correctly. I use the coloplast sensura convex wafers.

As for diet, well, I can eat way more things now than I could when I was sick... but that was a different issue. Hope you work things out...
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

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/22/2011 7:22 PM (GMT -6)   
Time in itself can also be a healer...  the small intestine has a new book of information to learn...  to mimic the activities of the colon, which you no longer have/or use.  The body and the small intestine are learning their own language and are trying to figure out their new role.  Keep your fluid intake up.  Maybe boost fluids with something of nutritional value rather than just plain water.  Vitamin water, even gatorade.  You may want to dilute if sugary.
 
I've used Convatec since 1984, 2 pc system, and now also use Eakin Seals and on occasion, paste too.  Always use a convex insert.  Plus adhesive remover wipes and neutrogena soap.
 
Keep us updated.

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted 6/22/2011 9:09 PM (GMT -6)   
That's exactly my two drugs, every 3 weeks for 6 times. I agree that the ileostomy has been more troublesome than the cancer.

Am excited to find another someone like me! I wish you the best...let's stay in touch, please!!

tazman
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/23/2011 5:11 PM (GMT -6)   

What is an ostomy belt and how is it worn?  For those who mentioned sure seals, are they worn everyday as long as you don't have a reaction to them.  I saw where some people are allergic to them.  Are they just worn for activities like swimming?  I am going to ask the ostomy nurses about the convex wafers and other things people have mentioned.  I had one like that last year and it did not seem to work as I had herniated behind the stoma.  My new stoma seems fine so I will ask if I need to change them.  This may sound like a stupid question - when emptying your pouch, do you rinse it out with water?  Just cleaning out with TP is hard as it never seems clean and if poop is soft, how do you get it all out?  Can't tell you how happy I am that I found this forum.  It is great to talk about things and ask questions of people who are experienced with these problems.

Christine

 


tazman
New Member


Date Joined Jun 2011
Total Posts : 5
   Posted 6/23/2011 5:17 PM (GMT -6)   

Daffodil -

If you are interested, there is a great discussion board for ovarian cancer on the American Cancer Society's website.  Search for Cancer Survivors network and it will bring you to it.  Do you go to a support group, either in person or on-line.  I go to a group at the local hospital for ovarian cancer but there are no support groups in my area for people with ostomies.  The social worker who runs the cancer group said that for ostomies, the ostomy nurses take the place of a support group so they all disbanded.  Too bad as getting used to an ostomy is not an easy task.  Keep me posted on your treatment progress and I wish you all the best.  We will definitely keep in touch.

Christine

P.S. - how do you post a reply to a specific member?

 

 


blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/23/2011 5:30 PM (GMT -6)   
An ostomy belt is a narrow elastic belt that attaches to loops that are on some wafers. I haven't worn one, but a lot of people swear by them. It gives extra support to the wafer.

Some people wear sure seals all the time, or you can just wear them sometimes. They stick well, so they're not the sort of thing you would take on and off a lot... I only take them off when I'm taking the whole pouch off. I have had trouble w/my skin where they are in the pubic region.... I can't tell if it's the sure seal itself or the shaving or what, but that skin doesn't like them all all. They are fine everywhere else for me.

There was just a post about rinsing the bag -- some people never do it, some do it every time. I had a nurse tell me not to, but I think this is one of those things where the people who are living it 24/7 know better. I have started rinsing now and then when I've eaten something that sticks a lot.... also nice to do before a bath. But mostly I just clean the end.

I don't think you can post a reply to a specific member -- but if you click on the person's name, and they have an email in their profile, you can send an email.
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

Daffodil
Regular Member


Date Joined Nov 2010
Total Posts : 90
   Posted 6/24/2011 7:03 AM (GMT -6)   
Good Morning Christine!

I live in a small town, so no support groups. I drive for chemo 2+ hours away from where I live. I do have wonderful friends and family, so get lots of good support. I go Tuesday for treatment 4. I have a friend in Alabama who is on the same protocol as we are, so it must be a pretty normal treatmet regime.

Absolutely the ileostomy has been more of an adjustment than cancer.

I would like to reply to you in email form, so I will go and add my email in my profile.

I am a floral designer, so I am off to do a wedding! It's such fun getting to play with flowers and my good friends at the same time.

Have a great day!
Mollie
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