Hello,

I came across this website and I have to say, I've been given a new sense of hope! I am not the person with the illness but it is my grandmother. She is my world, took care of me when my mom worked as a single parent, and lived in my house with my mom, my sister, and I until I moved out with my fiance; being her advocate now is the LEAST I can do for her! I hope it's okay that I've registered and am speaking and asking questions on behalf of my grandma but I could certainly use any and all advice and support. This has been a tough 4 months. My grandmother has undergone 3 surgeries. Ultimately, she has a carcinoid tumor that cannot be removed.

Her last surgery left her with a bag on the left side of her body. I was under the impression that it was a colostomy bag that was put into place since she cannot removal bowels otherwise. After a little research, it didn't look like a colostomy surgery opening so when I asked the surgeon, he claimed it is an ileostomy bag. Regardless of the which bag it is, her bag leaks. From what I have researched, there is to be an intestine (large or small depending on surgery) somewhat pulled outward of her body. But, this is not the case. It is like a hole on her left side. The leaking caused a terrible infection and rawness of skin (which has now healed) but the leakage continues.

If anyone at all, could please shed some light on what may be going on? I've spoken to her surgeon but without a book of paperwork of research that I come prepared with, the surgeon seems to run me in circles until I come back with further documentation, research, and questions. Please, any information would be incredibly appreciated!

I admire you for being your grandmother's advocate. I'm not sure how much her stoma has sunk in. If it's not too much you can get convex wafer to help the stoma stick out some more and prevent leaks.

I have heard of stomas falling back in. I'm not sure what all of the options are there.

Is there a ostomy nurse affiliated with your grandmother's hospital that you (or her) can call? They are usually more helpful than the surgeon and explain things in simple terms.

Thank you Karbear! I've been pretty involved and have watched everything while the nurses work. I have to say, I've never seen anything really outward to fall back in. I'll take another look when I see her again. There is no assigned ostomy nurse to my grandmother and she is now at a rehabilitation facility. I will definitely call both the hospital where her surgery took place and the rehab facility to ask to speak with an ostomy nurse.

Thank you! I will do this tomorrow!

If it is an ileostomy that she has and the stoma is not protruding at all, that needs to be addressed. There have been people here who've had this problem and sometimes a small rod is placed behind the stoma to keep it an 'outie.' She shouldn't have to suffer with the leakage.

There's a product called Ilex that is an excellent barrier ointment. Call the company and they can give you information about how to deal with things.

Also, you can contact all the ostomy companies and ask them for samples. They are usually really good at sending a whole slew of products so your grandma can see what product or products work best for her.

Also, post in the ostomy forum here. We have some extraordinary ostomates here and they'll be happy to halp you.

Your grandma is a dang lucky lady.

kathy

Hi Kathy,

Thank you so much! You are so sweet! It's so hard to watch her suffer and my mother is so overwhelmed with all that is going on, she can't think straight sometimes from all the stress. I love them both dearly and I feel so strongly that they have done so much for me and made me who I am that I will do whatever I can and whatever it takes to help my grandma (and my mom). Ahhhh, here I go rambling - So sorry!

I know once her skin became so irritated, the nurses and doctors began using different adhesives and ointments. I will see if Ilex is what she has now or if I need to ask for it. And I NEVER thought about calling the ostomy companies!! That is so smart! The hospital tried 3 different bags (that I've seen and counted so far). Each one seems to have a leakage.

Thank you so much for the info. Kathy! I am going to look into all this! Honest, it means so much! THANK YOU!

My surgeon "installed" one of those plastic posts right through the stoma when he removed my colon and gave me the temporary ileostomy. It certainly helped keep my stoma "out there" instead of retreating. It really sounds as though your grandmother needs an ostomy nurse's expertise to help her solve her problem. There is an answer for everyone dealing with ostomy issues and much is discovered by trial and error. Be persistent in seeking help for her. No one should have to go through what it sounds like she is going through. Best wishes!

A plastic rod (called a bridge) is used at the time of creation of the stoma, to prevent slippage of the loop of bowel back into the abdominal cavity while the stoma matures. It is removed after 5-7 days. This is only for the diverting type (or loop) ostomy. I've never heard of it being used later on.

A convex system is your best bet for getting the stoma to protrude a bit and prevent leakage under the wafer. Since she has cancer, I would not be surprised if she has gained water weight, causing swelling and making the appliance to fit poorly. Another idea might be to also use an ostomy belt for further support to the flange.

I agree that rather than be running in circles with the surgeon, just ask him for an enterostomal referral. This is a specialized nurse with much more skill in this area than the staff at the rehab facility.

Good luck,

Jan

To add to what everybody said about how this should look if it's a stoma I have a few other ideas.

Did they make something that needs to be drained by using a catheter - where they stick a flexable tube in to drain out the waste? Then they put on the bag to catch any leakage?

My father has had ostomy bags attached to to wounds that they could not get to stop draining and they couldn't pack and they were on his leg due to hip infections.

Could you go to your Grandmother's facility and discuss what and how they are taking care of this. It would be great if you could watch them when they change the bag. It could be they are not changing it properly and that is causing the leaking. My father was in a nursing home for a while and only a few of the staff knew how to change his bag. He also had visiting or home health care nurses come to his home and dress his wounds and change the bag. It was a bag we had to empty as it became around one third full.

She probably has nothing like this but they do use bags on wounds other than ileosomies. Usually ostomy bags are on the right hand side but the placement is probably where it had to be.

The most important thing is to make your grandmother as comfortable as possible and it's wonderful that you are being such a caring advocate for her.

Please let us know how she's doing and what you find out.

CeeeeCeeee – Thank you for sharing!

I asked at the rehab center if there was an ostomy nurse on staff and if I could speak with , she said they do not have one on staff. Should I be concerned or is that typical? I agree and believe that if there was an ostomy nurse working with her, the trial and error would be much more purposeful and successful. I won’t be giving up! I was telling her about all the amazing people on this site and how I am learning so much (I was even giving her tips on eating and such), she was so happy. She thanks everyone on this site who has been sharing and helping me figure this all out.

Jan – Thanks for the information! I am definitely going to see if the rehab has any convex wafers. If not, I will find out how I need to handle that- maybe through insurance? Are most things essential items covered by insurance (i.e. wafers, bags) or is it more personal expenses? Would I ask the surgeon for an enterostomal referral? Again, thanks so much for all the help!!

Toughenough- I’ve seen several different things used and bags applied. In the beginning, things were fine. Once the leaking began, it seemed to never be fixed. Towards the beginning, the nurses were using clear bags with a frosted plastic looking wafer, they used some sort of paper-like tape and the leakage would remove the adhesive, and then everything would just miss going into the bag. The nurses were putting diaper padding around the ileostomy bag to catch all the waste. My grandmother’s stomach because highly irritated and raw. Every changing that involved removing and replacing the tape was excruciating. She ended up back at the hospital (she was at already discharged from the hospital and at the 1st rehab facility). The new nurses were using brown bags now. Still leaking. Now they are usually what looks like a longer bag but it has like a close-able straw at the end that can be opened. That bag made most sense when she was on IV fluids since the straw-like opening allowed easy discarding but now that my grandmother is eating foods, I haven’t seen a full changing procedure to see how they do it now, I’ve seen bits and pieces here and there and have seen her ileostomy without the bag on- from what I remember it looks like a hole only. Through trial and error, we have found that the brown looking wafer stops the leakage the most but the leaking still finds a way.

We have asked the nurses what is going on and what they are doing. They have told us the surgeon needed to prescribe the other bags (which he did) and then they said it might be because it is on the side of her stomach and when she moves and sits it allows gaps between the adhesive/tape for the leakage to happen.

Thank you again everyone! I am going to be very busy the next couple of days and I will let you all know what I find!! If you remember anything else, please share- it really means so much!!

What a blessing you are to your mother and grandmother. We should all be so lucky to have such devotion and care in our lives.

I want to add a few thoughts. Eakin seals are a big help in popping the stoma up AND protecting the skin. Eakins are flexible, moldable rings 2" or 4") that you fit around the stoma under the wafer. Try different brands of appliance because sometimes that makes a huge difference. I can't use any of the barrier wipes or peeps because they irritate my skin, as does the paste.

Also, many appliance manufacturers have ostomy nurses on staff who can consult with you. I know convatec and coloplast do and I bet all the big companies do. You may be able to photograph the stoma and email it to them to get suggestions.

JillM- Thank you so much! Your words are so sweet! I really don’t know what I would do without those women in my life. =) Thank you for the information on the Eakin seals! I don’t think this is used under the wafer. I’ve considered taking a picture of the stoma so that I can better understand, see, and share with others what it is I think is going on. By the time I get out of work, the bag is always getting full but not enough to change it while I’m there. I will have to catch a time in the near future to take a quick picture. Thank you, thank you, thank you!

Visiting Nurses, or Home Health Care Nurses around here have ostomy nurses. Is there anyway you can find someone from onw of those local organizations or the hospital where she initially had her surgery to come in and inspect the way they are taking care of your grandmothers stoma? I'm sure there would be a charge but someone that knows what they are doing needs to help as the waste on her skin is painful and she shouldn't have to suffer!

You are an awesome advocate for her. It's hard seeing someone you love having these medical issues.

Also, try calling the hospital where her surgery was and asking for the Wound Care Dept/Clinic. Then ask if they have a devoted Ostomy Nurse. That is who you need to see. I don't necessarily think you need a referral for this, but you may, depending on insurance. Also, when the nurses are changing your grandmother's bag, they need to make sure the skin is completely dry. There is a powder to use, it's called Stoma Powder (similar to baby powder but not quite) and it completely dries out the whole area. They should wipe away the powder and it will stick to and then dry out the areas with moisture. Then make sure they use a No Sting Barrier Wipe(3M makes a good one) which helps also. Let it then dry. If there is moisture when they put the bag on, the wafer will not hold and thus, will eventually leak.

Your Granmother and you mum are so lucky to have you. I had a ileostomy back in Oct and I saw the stoma nurse everyday in hospital for two weeks and I had one come to my house twice a week for 4 weeks so I would be contacting the hospital and asking for a stoma nurse to be arranged and don't take no for a answer. Also with a stoma you need to be carefull in what you eat and drink as you can get dehydrated and certain foods play havic with the stoma so hopefully where your grandmother is they know all of that. I am lucky my stoma comes out a lot so I do not have problems with leaks so your grandmother should not have to deal with the job the surgeon did. When is she due to see him again or can you get another surgeon to see her. It is a tough enough to have a stoma and cancer without having to deal with what your family is going through.
This site is wonderful and I have learnt so much more and stil learning from the members here
Good luck and I hope your grandmother gets the care she deserves

Here's an update: :/

I just want to thank EVERYONE again for all your kind words, all your advice and suggestions, and for sharing your experiences with me and my family. This is a very, very difficult road for us all. My grandmother went to see the surgeon yesterday (turns out it was an accidental appointment because the surgeon didn't need to see her but regardless it gave us further informtion). The information we received was not what we had hoped or even expected.

I questioned the surgeon today, after my grandmother went back to the rehab facility crying that she would die before my wedding in July and that the surgeon told her to get her arrangements together (i.e. will). Here's what I've been told: my grandmother ileostomy is not an ideal ileostomy, it was done in desperation. The tumor has spread throughout her liver and is surrounding her intestines. He called it stage 4 of the disease. He said it is a slow growing tumor but one can never know when something critical will happen. I inquired about the look or lack of the visible stoma. He explained that her intestines are like "cooked spaghetti left in a pot for too long". They are hard and barely able to move. He said we were lucky that they were able to get the small intestine to reach for the ileostomy. Finally, he told me that there is no time frame- she could live another 6 months or another 10 years. But we should prepare for the worst and hope for the best.

I also asked if the convex wafer would at least make her more comfortable in not allowing all the leakage to happen, he was unsure but suggested we have her meet with the wound care dept. She has an appointment for that.

I want to take her to Sloan-Kettering, since they are the leading hospital in cancer research, but they said she must be discharged, stable, and able to walk in. I'm getting on the phone now with her rehab facility to see what milestone she needs to achieve so we can get her to SK.