28 Nov Things are Changing for the Ostomy World!
A few weeks ago I was asked to sit on an advisory board for Mount Sinai Hospital in Toronto for a special project to change ostomy education in both the medical field and for families and patients alike. This project has been named the Rachel M. Flood program of Education for Ostomy and Wound Care.
On this past Wednesday, I attended the first meeting.
I had never been on an advisory board, so I had no idea what to expect. I was overwhelmed as I walked into the board room next to the hospital’s president’s office and took a seat where there had already been a large booklet and agenda set out for me.
I felt like a real adult!
The first meeting was really just for introductions and to get a feel of what we would be accomplishing with this project. I sat among some amazing individuals, one being Dr. Zane Cohen, a very accomplished surgeon in the field of IBD. I also sat among nurses who had earned high esteem in their work at the hospital. Mary Agnes Beduz, the director of Nursing Education and Development was also present, sitting to the left of Rachel M. Flood herself, the wonderful woman who has contributed the money for this project.
After our introductions, we began to discuss the programs mission. We were informed that the purpose of this program is to provide a regional, national, and international center for excellence in education, clinical skill development, and research in ostomy and wound care. This will enable health care professionals to provide the best care that they can to both patients and families.
Myself, and another member of this board, an executive of Ostomy Toronto, were chosen to give input from the patient side of things. During this first meeting, both of us included our input on how improvement in patient training is needed. We discussed how the level of training and what needs to be taught to these ostomates is extremely inconsistent and often unsuccessful. Ostomates usually only have around 5 days post-surgery to learn everything they need to know to care for their ostomy for the rest of their life. The board was extremely receptive to our ideas and it looks like this program will help make a huge change in ostomy training for patients.
This is only the beginning of this huge project, as the target finish date is 2014. We have a lot of work set out for us but I think we’ll be able to do it.
Since I am on this board for the patient side of things, I wanted to ask you guys:
What do you wish you would have been taught post surgery before you left the hospital?
Did you have enough time to learn the information you were taught before you had left the hospital?
Did the doctors and nurses address and cater to your specific concerns pre and post operation?
What would you like to see improved in ostomate education pre and post operation?
Let me know!
Brian P. Greenberg
Posted at 17:12h, 28 NovemberThank you so much for posting this! I just had my ostomy surgery and I have to say learning everything in the hospital while recovering was an overwhelming experience! I think it's so important what you are doing and hopefully changing the way things are done post surgery for all ostomy patients!
Jack
Posted at 17:47h, 28 NovemberI had a colectomy and loop ileostomy at Mt Sinai in fall 2009. In general the nursing and care training was very good, as was the follow-up through homecare delivered by St Elizabeth. The one place where things were inadequate at the hospital level was in the selection of an appropriate skin barrier. The supplies I was discharged with did not suit my (skinny and rather concave) abdomen very well, and left me having almost daily leaks. Selecting something better when the homecare nurses were only visiting weekly was a real challenge, and the resulting messiness, combined with the usual post-op trauma and the gloom of having had colon cancer come out of the blue at age 32, made that a pretty dark and helpless time. Mt Sinai itself wasn't able to help much with the selection either: the ostomy nurses there had good ideas, but they didn't have the right stock on hand for me to try out.
I also could have used better guidance in actually sourcing the supplies after the homecare program ended and St Elizabeth's were no longer able to order them for me. The product that ultimately worked was a new (ie two-year old) light-convex Coloplast seal, and most of the ostomy supply vendors in the GTA did not stock it and were unable to order it in a timely way — and the manufacturer doesn't do direct sales. Getting supplies meant driving, which meant being strong enough to get out of the house for an hour, and not using pain killers. And, of course, since I was using a new niche product, the one store that did have them didn't keep much on hand, so I had to time my resupply visits carefully and buy their full stock when I could.
Of course, we eventually worked all the kinks out, and I had a good couple of months until the ostomy was reversed. In general, it felt as though the system is set up to function just fine if everything goes as it should, but things get worse when even minor setbacks enter the picture.
Jamie
Posted at 20:27h, 28 NovemberIn January of 2000 my parents & I drove 5 hours through a blizzard to Cleveland Clinic (Ohio Campus) for my complete colectomy resulting in a permanent ileostomy. At that time we did not have all of the internet resources like we do now for support and information. Prior to my surgery I had 2 books, "Coping with an Ostomy" & "Living with an Ostomy", to prepare myself. I am very thankful that I was able to have my surgery at CC- One of the top hospitals in the world for Colorectal Surgery. My surgeon was incredibly talented and I received amazing care. A few days before discharge my E.T. (stoma nurse) came in for my "stoma tutorial". She asked if a man that worked for Convatec (supply company) could observe. One of my coping mechanisms is laughter & joking. I was diagnosed as a young child so I am not modest at all in a hospital setting. I said yes. During the session I had the nurse & Convatec guys laughing up a storm. He thanked me and left. A week after getting home to Cincinnati, I received a large box of free Convatec supplies with a handwritten note of thanks from the PRESIDENT of Convtec thanking me for allowing him to observe. I ended up switching to Hollister products soon after leaving the hospital. They were a much better "fit" for me. I still use Hollister 10 years later. I agree with Jack. The hospital should let the patients know they have the freedom to explore different products to see what works best for them. Ostomy supplies are just like medication… What works for one person may not work well for another.
I only had a few home visits from an E.T. post-op in my home. I remember the nurse telling me in a fit of frustration that changing my appliance would eventually only take me 5-10 minutes to change. I thought she was crazy but she was right. They gave me a list of no-no foods.
I still sometimes struggle with body image & intimacy. Finding proper undergarments was a challenge. I know the E.T.'s job is clinical but I wish Dr's & nurses would offer more resources for patients to help them with the psychological aspects of this life changing surgery.
After surgery I called my local CCFA chapter & connected with an amazing woman with an ostomy. I then became very involved with CCFA. I'm very grateful for the support they provided.
Thank you Jess for all the hard work you are doing for all of us. It means more than you know!!!
Michelle
Posted at 15:14h, 29 NovemberHi Jessica,
What a wonderful project to be involved with! My beautiful daughter had her colostomy surgery at just 2 days old and as parents, we were given about 2 days of training. The hospital staff tried to reassure us that would have all these supports in place after her discharge from the NICU, but it was more like "OK here's your newborn baby with an ostomy….good luck with that!" None of the CCAC nurses who came to the house had any ostomy training and even the hospital told me that "all ostomy products are all the same- there's no difference between one company and the next." After months of having to change the bag 5 times a day, I started researching and found out that the type of products TOTALLY make a difference! When it came time for me to think about returning to work, we had the daunting task of trying to find a daycare that would be willing to accomodate my daughters ostomy needs. At first the City really discouraged me from putting her in mainstream daycare, but we found a way around that. My husband and I developed a special infant colostomy training program by ourselve (the hospital refused to get involved) and spend 6 weeks educating and training all the daycare workers. It worked and she was successfully integrated into a mainstream City daycare! The daycare workers are just amazing and they along with the training program were recognized by the Lieutenant Governer -David Onley at the CityKids inclusion awards! Since that time, I've connected with many parents who have infants with colostomies -there seems to be a common problem in terms of ostomy training and education. I've collected all our information and I regularly send it out to parents who could benefit from our experience, but it would be so great if there was better awareness from the hospital side. In addition, a lot of these parents could use a break, but it's practically impossible to find a babysitter who can change an ostomy and I've yet to find a PSW worker who is trained in infant ostomy care. It would be wonderful if there was some way to connect experienced parents with children with ostomies to the ones who are just starting out. Thank you so much for posting this -you are an amazing person 🙂
Wendy
Posted at 15:48h, 29 NovemberI had permanent ostomy surgery in September 2010. The hospital and nurses did a good job of addressing the physical changes and care of having a new ostomy but no one discussed or prepared me for the mental challenges of accepting a permanent ostomy. Body image is a huge part of this life change and should be addressed more as part of the healing process. Thanks for the good work you do and the positive attention you give the ostomy world.
Paul Head
Posted at 18:31h, 29 NovemberGreetings Jessica,
Once again, your blog, and dedication to making a difference in the IBD Community, is resulting in some much needed feedback from your followers, and positive changes in the Ostomy World. Thank you, hardly seems enough, but I am sure you get my message!
Michelle
Posted at 01:52h, 30 NovemberI definitely agree that more is needed in regard to ostomy care and support. I have Crohn's Disease and needed to have a temporary loop ileostomy for four months this past summer. I had my surgery at Mount Sinai and while I feel like they tried, I did not feel prepared pre or post surgery to have an ostomy. The biggest thing actually was the emotional and mental adjustment. It isn't something people talk about, but once you have one and do some research you find out that they are pretty common. I am really glad to hear that they are putting together an educational program and glad to see that you are involved to give the personal perspective. Some key things for me are:
1. There are many different products out there and you need to be able to try a lot before you find something that works! I had a ton of skin problems and irritation up until it was reversed and it was unnecessary. While it can be tolerated on a temporary basis, when it is permanent, this it is unacceptable.
2. Mental/emotional issues – It was a really hard change to have my bowels being expelled out my abdomen. I just couldn't wrap my mind around it. It felt very foreign and was difficult to accept. By the end of the four months I had adjusted better, but I found the whole process emotionally draining.
3. Isolation – Unless you have/had one, it is impossible to understand. Having that support from someone who has been there is crucial. I felt extremely alone and discouraged…it was only through searching on the internet, talking to a friend over email who had an ostomy, and contacting the local ostomy care facility that I made it through it. I hate to think of anyone not having the support they need to make this transition, especially if it's for life.
Good luck with the panel! I am sure you will help a lot of people by getting more information and support out there! Thanks.
Michelle.
Bob Russell
Posted at 19:38h, 03 DecemberH Jessica,
Before I answer your questions, I need to say that even though I am old enough to be your grandfather, you have become an inspiration to me. I saw you when you were in Burnaby B.C. giving your talk. This was my first tie at an Ostomy Convention and I had no idea what to expect. My operation was in Aug 2010 so as was and still am very new to this, so please believe age has no bearing on this, I feel as vulnerable as every one else. Your courage, vitality and acceptance of the situation has given me confidence to go out in public and be unconcerned what other might think. As you said, (paraphrasing) If they are your true friends, they will not see it as negative thing. When I was diagnoses as having a cancerous tumour, that would require a complete rectum removal I and would have to have a permanent Ostomy bag, I was determined to take a positive approach. Having said that, I have no idea what was ahead of me.
The questions you put forward in your report from the Rachel M. Flood program of Education for Ostomy and Wound Care. prompts me to offer this response.
I did have both pre and post assistance from the Ostomy care nurses at the Hospital where I had my OP, and Nursing home care every second day or so plus home visits from the Ostomy Nurse once a week then twice a week until they felt I had sufficient skill to go on my own, but with the knowledge of being able to visit there office at the hospital, on an "as needed" basis. So all in all I had, and still have very good support. As to the Hospital Dr's and nursing staff, this was a mixed bag. The Doctor, my surgeon, visited me three times in the fist week ensuring the surgery recovery was going as planned, As to the nursing, some were very very good and caring, one made it a point of tucking me in every night she was on duty to ensure I was in a comfortable position for sleeping. The removal of ones Rectum put a certain strain on the posterior, as you can imagine, so this was very welcome. Others were simply putting in a shift.
As to the question "What would you like to see improved in ostomate education pre and post operation?" I was provided with pre and immediate post operative education, but it was only after some time, plus some trial and errors, that I became intelligent enough to ask the questions that might have helped if I could have asked them post Op. Such as no education was provide about clothing, about bags busting off the skin, how best to handle hairy bodies where the Ostomy is. I did receive assistance from the Ostomy Care nurse, but only after I had had some negative experiences and sought their help.
As I said before, you are an inspiration to me and I would think countess others of all ages and genders, you posses an inner, as well as outer beauty, thank you for coming to Burnaby.
Bob Russell Maple Ridge BC
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