Stoma Care - My Positive Experience with Pouches and Wafers

I see all of these questions about wafers and bags, and I wonder what kind of medical service you guys received. Before my surgery, my doctor sent me to a stoma nurse, where I was measured for proper placement of my stoma. They marked it with a black felt pen, indicating the best placement for my stoma according to my body type and where I wore my pants waistline. Then, after my surgery, a stoma nurse was there teaching me how to cut out my wafer and apply powder and paste. That was followed up by visits to the stoma clinic to check if I was having any problems. In addition to that, if I have any problems, I can call the stoma clinic and get a return phone call from a nurse within hours to answer any questions that I have. I don't know if many of you with all these problems are from countries with socialized healthcare, but here in the U.S., my doctors, nurses, and private insurance have been fantastic!

You are lucky to have had such extensive care. After my colostomy, I had six weeks of home health care and a great nurse who knew ostomies. After, I secured a position for a medical supply company. I was shocked at the number of people who came in and had been sent home from the hospital without any instructions as to how to care for their stoma, how to apply an appliance, or what accessories, if any, they needed. The majority of the customers with new ostomies did not know that they could change the brand and style of their appliance until they found what worked for them. A panicked customer called in tears that her stoma was going to die because the bag was up against it and it couldn't breathe. I asked her if the stoma had a nose; she then laughed, and that was the end of that conversation. This is just one of many conversations with new ostomy patients, so be very thankful you had good care because the majority of people don't.

Well, I can say I got exactly the same treatment as Tim, with no health insurance in mighty Australia ........

I'm still in contact with my STN, and I count on her for things she can find on any of my ops that I don't understand ...

Having private health cover here isn't something you get with your job. You do it privately or if you're lucky, a job. Our public system isn't the greatest, but as Tim said, same as me, I was measured lying down, standing, sitting. My stoma is in a perfect place. If only the perfect place was in its home, hahaha, in my body .... Hate to hear what some people suffer because of health insurance. It actually makes me sick. Just sayin' MOOZA OZZIE OI OI OI

Callie, that's funny. Here, as soon as you're done with the hospital, you get a few boxes of pouches, wipes, and liquids. Soon enough, you realize you don't need so much. That's so sad to hear that people have stomas and have to ask for help. The nurse should be thrown out on her/his arse. I do volunteer at our ostomy association, and strangely, people are in shock that I have a stoma too. They think it's just them alone fighting the world. I wish I could spend time to chat, but we actually do the ostomy supplies for free because we're nice. LOL or crazy. Yep, both.

I'm in New Zealand, am so lucky... all my healthcare is free! I use no pastes or powders, just wipes and Hollister bags, and use anything from one to three a day.

My Ostomy Journey: April | Hollister

We have awesome insurance. I left the hospital completely unprepared. I was in a hospital that is considered one of the best in the Atlanta, Georgia area. My surgeon suggested WOC nurse after I had a meltdown about 18 days out. I was losing bags like every 4 hours.

I think the hospitals should do a better job at hiring competent WOC nurses and making sure that ostomy patients see them while they are still hospitalized.

Hi all,

In California - I've got Kaiser Permanente, a health plan. I stayed in the San Francisco Kaiser hospital. The WOC nurse came to see me one time, after I'd been in my room for 3 days. She was shocked to see blisters underneath my pouch, this due to an untrained nursing staff that did not know to keep that area DRY! Especially with a Hollister transparent pouch.

The choice of the ostomy brand at Kaiser is Hollister. The WOC nurse did not educate me on the other brands and options (two-piece, filter, closed, drainable, clipless, transparent, opaque...). It took me 6 months of trial and error and fabulous support from a Coloplast Rep to finally match the brand and options for me.

Coloplast Sensura - would have been more cost-effective if the WOC's (3) that I had access to were actually users of the products they recommend. Most get their experience from the patients they see and not from living with what we will have to.

For me, the Hollister, Convatec, and CyMed brands did not have user-friendly features.

Oh, I am an ostomate that drains the pouch contents by adding a little water first.

The hospital WOC taught me to squeeze it out like toothpaste! I find that too time-consuming and messy. With water, the output port is washed clean after 2-3 water applications. Caution must be taken not to use too much water on the filtered bags or you can clog the filter and they will not function. Also, filter pouches for all brands will not function for more than 3-4 days due to moisture build-up in the pouch anyway.

As with anything, we are all as unique as stars in the sky. Hope my brief experience helps anyone that has questions along these lines.

See ya,

Ron

Coloplast and all of the WOC nurses are a blessing. Love the products and all of the help they have given me over the years.

Here in Ontario, Canada, our health plan has a program called Assisted Devices Program. It helps with the cost of healthcare products that are necessary for a reasonably assisted life. (Wheelchairs, bath benches, walkers, etc.) I receive $300 twice a year towards my colostomy supplies. Not enough to cover the total cost but sure helps.
I was at a seminar by local Shopper Home Health and they had a nurse/rep from Convetec.
I had been using the cheapest wafers that I could afford and sometimes was having problems with blowouts. She helped steer me towards a more inexpensive wafer from Convetec that fit me better and caused fewer problems. I also got into a program from Convetec with a 24-hour helpline that also helps with some emotional support or answers questions you may have regarding your ostomy. They also supplied me with some samples as well.
I am on a fixed income, so the financial help from the government. Some provinces in Canada cover 100% of the cost of ostomy supplies, and some do not assist financially at all.

Isn't it interesting how we in the US malign the NHS in other countries as inefficient and ineffective. None of the posters here have had problems getting the help they needed in NHS countries. But I could tell you a few stories about uninsured people here that are very sad indeed.

The Kaiser experience does not surprise me. Depending on one's insurance one may not have access to changing brands and sizes. SoCal Kaiser wouldn't pay for one gentleman's Adapt rings (similar to Convatec Eakins seals) and the WOCN told him to work on "shrinking" his stoma down to one inch to wear the next size down wafer! Unbelievable!

I have had some of those ridiculous experiences where RNs in the hospital and in home health care didn't know how to manage ostomies. I find it incomprehensible that all RNs, LVNs, and CNAs are not taught basic care of ostomies.

I have been blessed since I've had my ostomy in 1971. My husband was in the Marine Corps from 1967 through 1991, then a government employee until retirement in Dec 2011. I had my initial surgery in Bethesda Naval Hospital and have been going to Walter Reed Army Hospital since. The Enterostomy Nurses I've seen there over the years have been dynamite. All of my equipment, supplies, and doctors' appointments are of no financial cost to me. When I read all that has been experienced by other ostomates, I get angry. But I also see our strength and that's good too! I just love us!!!!!

I am on SS and have Medica as my extra insurance. It covers all my supplies.

Although I had emergency surgery (twice in one month), I had wonderful care. There were actually ostomy nurses who came and worked with me. The nurses and aides seemed to also know what they were doing. By the time I got home (two months in hospital and two in rehab), I was extremely comfortable taking care of myself and the stoma. I did change to the disposable bags once I got home which I like much more than the others. I still have free access to the nurses.

My only disappointment is that I had no input as to where the stoma(s) were going to be placed. The second one - permanent one - is exactly at my waist and it is very hard to find anything with a waistband to fit.

Susan

I had not seen an ET nurse prior to surgery. I did have one afterwards in the hospital, and she even came to the house when called in by the home health Wound Care nurse who needed help with my special situation. We have no ostomy clinic anywhere nearby. My ET (WOCN) nurse has since retired, but she comes to our support meetings.

My first stoma died a week after I went home and the whole area retracted so that I looked like I had 2 "innie" belly buttons instead of 1 and a stoma. That made it impossible to keep a pouch on and not leaking for longer than 3 hours, no matter what we tried. And the pastes and eakin rings just melted and ran down into the stoma belly button, filling it up so that nothing could get out.

And my skin, well you can imagine with needing to replace the whole affair. My insurance company cut me off with bags at the end of February with no hope for any more until May 9 when they were going to review my case. I told them I wasn't out on the street corner selling them!!

Luckily?? my stoma started closing, I fired my first rear admiral (colostomy surgeon as Brenda Elsagher calls him) and went to another surgeon who repositioned the colostomy with siting by my WOCN, and also put in 3 hours with an assistant removing all of the scar tissue from the first surgery.

Consider yourself lucky if you have access to a WOCN, an ostomy clinic, or a physician who actually checks your ostomy. On Easter, the emergency room would not treat a new ileostomate whose skin was raw. They told her to leave and go to the wound clinic, and they wouldn't treat her either.

I have no problems now, life is good, but I still would enjoy the luxury of having a clinic I could go to for a check-up. No medical personnel has seen my site since May 2009, and trust me, I've had many doctor visits since then.

If you have comments about ostomy clinics, please visit my support group's blog on the subject and leave your ideas or experiences there:

http://hernandocountyostomy.wordpress.com/

Hi there,

I live in Cardiff, Wales, UK and had surgery at University Hospital Wales, Cardiff, including a reversible loop ileostomy in March 2011. My entire treatment had been by our National Health Service and thought I would give an outline of it from a Welsh perspective.

I was seen in hospital by a stoma nurse once it was established I needed emergency surgery due to a volvulus. She explained all about the ileo and drew the black dot on my abdomen. Due to delays by surgeons in operating, I was very ill/unconscious in ICU for 6 days after the op.

I have been told that stoma nurses came to ICU daily to change the bag and even went through the process with my fiancé who wanted to know in case he needed to help. I came round and went to the High Dependency unit for 24 hours and was visited there by the stoma nurses who changed the bag for me, explaining it all. At the time, I had a bag that had a tube draining contents into a big bag similar to one attached to a catheter (which I also had).

I then moved to hematology ward as being treated for a lymphoma and the consultant there didn't want me to go to the surgical ward because of the way the surgeons had behaved and so my ward was some distance away from where the stoma nurses were based. As far as I can remember, they came to my ward at least every other day to change the bag and talk me through it, letting me get involved with it at my own pace.

I had complications after about a week and my abdominal wound had to be opened a bit as infected and turned out to be a leak under stoma and stoma output tracking over to wound. When this happened, the stoma nurse came immediately and put another bag over the open wound to collect the output and again taught me how to do it once I was ready. I had a few leaks while I was in (for about 5 weeks) and a stoma nurse, usually my own one, would come fairly quickly to help and offer advice on different product options.

About a week after the surgery, she brought a pack with all the supplies they had decided would be best and she would frequently bring additional supplies while I was admitted. She tried a variety of brands on both stoma and wound until we found the right one.

Just before I went home, she arranged an order to be delivered at home and set up home visits every few days for the first couple of weeks. I would then have seen her in the clinic regularly but as I was back and forth to the hospital for chemo and admitted for infections following chemo, I would just let her know I was there and she would visit.

I had further complications where a fistula burst open to the right of my stoma about 1cm away and she came straight away and arranged different bags to cope with that as well.

I have on occasion since then had queries and have either been able to speak to her or another member of the team by phone or visit them in their clinic whenever I needed. I am actually going tomorrow for advice regarding a hernia and they have given me a slot that is in line with an appointment I already have with one of my consultants.

In terms of supplies, all prescriptions are free in Wales. I am not sure if an ostomy is a reason to get free prescriptions in England or not - I think it is.

I can contact the supply company at any time to reorder my regular supplies in any quantity. They will also send me additional products that I ask for that may have been recommended on the site, for example. Delivery is usually one to two days after I order. I can also request plenty of extras like wipes, adhesive remover, etc.

I even get stoma supporting underwear and vests by Comfizz for free on prescription. All I had to do was fill in an order form on their website with my doctor's details and those of the company that sends my supplies (charter) and they arranged it all and they arrived in about a week. They're really good and plan to order more.

I realize my post is very long but I wanted to give lots of detail to illustrate how good the stoma nurse team has been and how good the prescription situation has been. I cannot fault the service I have received - I do have an ongoing complaint about other care (or lack) received from gastroenterology, who wrongly diagnosed me with Crohn's instead of a Lymphoma and from the surgeons who delayed in operating for several days by which time I was on the brink of death but that is another issue entirely. As far as stoma care is concerned, I do not think I could have had better care. Hope that was of some interest for comparison purposes and sorry for the long ramble!

Sam

Dude...you mean? Once mighty Australia? They confiscated your bleepin GUNS, man! Hitler did that in Germany in 1938. You saw how well THAT worked out. How did you blokes allow that?

Tigerlily, the article you wrote back on April 24th captured me! First before I comment on ostomy care and caregivers, let me tell you that when my younger brother was age 4-6 yrs., (and he's now 57) my parents bought him a huge stuffed bear. He would often try to hit my sister and I and would receive punishment. That was why mom and dad got him the bear...to take his frustrations out on it! When he got this bear, he would put a pair of his play shorts and t-shirt on him and don't you know my brother named the bear Tigerlily Bell! It just brought up fond memories I thought I'd share and say thank you for bringing back a fun time in my life!
I was diagnosed with Ulcerative Colitis in 1968. After a couple of years of hemorrhaging, going from 100 lbs to 75 lbs (and being 5'6" tall looking like a refugee), and all the other symptoms that we ostomates have and/or are experiencing, I was flown back on a medical flight from Hiroshima, Japan to Bethesda Naval Hospital and upon admission, stayed there for 6 months. I was married on June 1970 and spent my first year anniversary in the hospital with an ostomy and clinging to life. By the time they had done the surgery, all my organs were covered with a layer of pus. (While in Japan, I tried to cover all my pain by taking handfuls of the steroid meds and pain relievers so I could do all the fun stuff young newlyweds do). I brought this up to my husband many years ago and he was beyond shocked.
In the 6 months I spent in the hospital, they had me in a room with another young girl my age who also was "gifted" with an ostomy. We both shared the same ostomy nurse team. After a few sessions with them we felt very comfortable and still had our dignity. We made a not so good time into sessions we looked forward to.
Enterostomal Nurses or ostomy nurses can make or break ya. I too was and still am receiving all my care, my ongoing updates and education from my ostomy team and my supplies through the military and have been since 1970 when I married my handsome Marine hunk!!!
To this day, all I do is call my GI doc, tell him the problem I'm having and he tells me to come in within a day or two-----keeping in mind I live almost two hours away ONE WAY!!! I am Blessed. I realize that but I know too that too many of my fellow ostomates are not finding their way so 'smooth' for lack of a better word.
As an employee at a local Hospital here in VA., I never had a problem sharing my disease with others who inquired. Hence, when a patient came to us prior to having an ostomy, who might have already had an ostomy upon arrival, I was asked if I would be o.k. With seeing that patient to just talk with them, share tidbits about whatever they wanted to talk about or just jump in with caring for an ostomy. I LOVED IT AND COULD SPEND THE REST OF MY LIFE DOING SO. If I don't know the answer to something, I WILL find out and you will not have to wait. We all know what it's like to hear someone on the other end of the phone or at the foot of the bed say "We'll get back to you". Yea right.
Sometimes we are all we have....one another. I get so fired up when I hear of ostomates not having access to the education that is MANDATORY for proper ostomy care, for a healthy life.
I know I have rambled on but honestly, I'm not sorry. I believe in doing what I can to see to it that this kind of negligence is unacceptable and those who ignore the importance of this education should be held accountable.
DON'T MAKE ME MAD!!!!!!
Thank you Tigerlily, I forgot now why!!!!!!