Volunteering as a Support Visitor for Ostomy Patients

Hi, I would love some input on this. I am considering contacting the hospital where I had my surgery. I was going to ask if they thought I could be of any assistance to new ostomy patients. I know they provide an ostomy nurse and contact numbers for local support groups, but I was thinking of a hospital visit from one ostomy patient to another. Would any of you have wanted that? Do you think it is a reasonable idea?

I would just like to give back.

Rosiesmom

Hi, It's "Marsha" and back in the "olden times" before stoma nurses, all they offered were ostomates who were volunteers from one of the Ostomy Association. I think it was a good idea back then, and it is still good now! Go for it. But you might meet some "territorial resistance."

Like all things, even back then, there was a "procedure," and a doctor had to authorize or request a visit from a volunteer while he/she was in the hospital. I felt as you did and wanted to "give back," and was a volunteer visitor for anyone who requested. In fact, that's how I met my husband. After speaking to him twice, he didn't want me to visit "as an ostomate...he wanted to ask me out on a date." But that's another story. I especially wanted to visit children, and in doing so, often had to counsel parents.

I tried to start an Ostomy Assoc. under the banner of our local hospital, which is very active as a community health center. They didn't feel there was a "need," an answer which really upset me. They said that their "wound care" nurses took care of that, or they called in the Visiting Nurse Assoc. The administrator completely missed the point...It would be advantageous to have an actual "ostomate" on call to visit new ostomates for added support. If I decide to pursue it, I would try to go through the local UOA chapter, become a member, and an "official volunteer," just to give yourself more "credibility." It will be interesting to see what you encounter when you try to "help."

Good luck,

Marsha...

 

 

 

Thanks for the insight. Perhaps I will also talk to my surgeon and see what he thinks. Who would have thought that trying to help might be so complicated? I will post updates. Wish me luck.

rosiesmom

Best of luck to you, Rosiesmom. I think it would have been nice to meet someone real who has a stoma when I was first learning!

I think that is a great idea and have thought about doing the same. I had my first surgery when I was a teen and when I went back to see my surgeon a couple months after the surgery, they asked me if I would be willing to stop by the hospital to see a boy about my age who had just had it done and I can still remember the joy and reassurance that I saw him have when I visited him. 

When I had my recent surgery, it would have been nice to have an ostomate visit me. It's not the same to have a wound care nurse or a nurse that specializes in ostomies.

Words of Encouragement from Ostomy Advocates I Hollister

Hey Rosiesmom, Skidder here. I am now retired (since 2011) and I was a healthcare worker in our local hospital. After working there for a year or two, I was asked one day by my boss (worked with Physical Therapy) if I would be comfortable talking with a patient who was in the hospital for a knee replacement and also has a colostomy and questions. Of course, I was honored to assist this young lady in any way I could. I can't begin to tell you how wonderful I felt being able to tell her so much...all I wished I had known. We laughed, cried; I was able to turn her on to Meetanostomate, Crohns and Colitis Foundation. It was great and I could see the weight being lifted from her shoulders. If you or any Ostomate who has come to terms with his/her physical challenges get the opportunity to assist others in the same boat...JUST DO IT. There might be something you might touch on that the other patient might not have wanted to ask and that is worth a million dollars!

Enjoy it. Choose your words carefully and tell her the truth. Don't patronize the person, but let them know you would be happy to help in any way and if you don't have the correct info, let them know you will find out. You will be blessed for helping others in any way you can. Good luck, Skidder

Thanks, I hope I can make this happen. It would make me feel like this journey was for a reason. Rosie and I feel so good about ourselves and we want to help others get there. The early days are so scary, I remember the third day, a nurse had to assist in emptying my pouch. She didn't close it properly and when I stood up there was an avalanche of poo and old blood running down my leg and all over the floor. She felt so bad but it just about did me in. Thank heaven my rock (hubby Tony) was there. I was emotionally spent for the day but the next day you just had to dust yourself off and move on. These are things that happen with a rainbow of emotions; this is where I would like to think I could help. Please God, I can.

rosiesmom

Hi Rosiesmom - Glad to hear you are doing well. I would advise that you join your local UOAA support group and go through the visitor training program before calling on patients in the hospital. Two reasons: 1) You receive beneficial training as well as an ID card, and are covered by UOAA's insurance as a volunteer. 2) In my past life, I was a hospital social worker and can remember how difficult it was to get the surgeon to even OK a social work visit; they can be so territorial (as can hospitals since they are always worried about being sued). Hopefully, the WOCN at your local hospital is tied in with the UOAA support group in Miami and can get you certified as a visitor. Your heart is in the right place! Pinky :)

Hi Everyone, I just visited my surgeon the other day to say hello and to present my new book. I keep in touch with him and send him emails several times per year. I gave him permission, in the early days, to utilize me as a resource for new ostomates. He refers to me a couple of times per year. Like many of you stated, I only had a WOCN to help me and none of them had a stoma.

In addition, I wrote a short book to help newbies see that life goes on after surgery. In the beginning, I could not figure out how, but it has been over 2 years for me. Stanley and I are moving right along. Every day is a gift, and I plan on doing the best that I can with the present. Like Rosiesmom mentioned, I felt there is a reason why I am walking this path... I believe it is to help others in some way. Take care. Have a nice day - it is a beautiful one here. LH

Hi Rosiesmom, I went to a training class through the UOA for being a patient visitor. They explained how to talk to patients and things like that. Check with your stoma nurse if you have one or with the hospital where you had the surgery if they have heard of that.

I only get called for urostomy patients because that is what I have, and it is few and far between. The trouble is the nurses and doctors don't know about us that much. So we have to get the word out there. I don't know where you live, but ask around. Some people want to talk to someone; others don't, so good luck. I hope you can help someone. I know the few people I have talked to were very grateful.
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I asked about this too and gave the team permission to pass my name and number to anyone who had similar issues. They cannot sponsor you, etc.—a huge murky mess of legal stuff. But you can also make your effort available to groups like the community nurses, volunteers in action, etc. I have heard that most big hospitals have outreach groups attached to the hospitals - support groups, and you can volunteer through them.

 

I have been contacted by a few with FAP (rare genetic disease) and with pancreatic cancer as well. It can make a big difference - good luck.

Hello Rosie'sMom,

By all means, go and do whatever it takes to visit post-op patients. After my first surgery at age 20, a cute college girl with an ileostomy came to visit me. She was wearing very formfitting white jeans! She made all the difference in the world in my recovery and self-confidence. I said, "WOW! If you can look that attractive with an ostomy, so can I." It makes such a HUGE difference in ostomates' lives to receive a positive outlook from a visitor.

I like your attitude about giving back, and it is my belief that a new ostomate will have a leg up on the transition back to normal life once they have conversed with an 'experienced' ostomate. With that said, there are dos and don'ts when visiting a new ostomate, so visitor training is important because the medical community is concerned about a visitor causing a setback. The UOAA (successor of UOA) has a visitor training program that is implemented at the local ostomy support group level that was developed in concert with the medical community.

I was blessed to have a great ostomy nurse - known as an ET (enterostomal therapist) and an equally great ostomy visitor when I had my surgery in 1978.

I would recommend you locate the local support group (known as an ASG) nearest to you by visiting www.ostomy.org. Also, you might consider attending the UOAA National Conference the first week of September. You can find detailed info about the conference at www.ostomy.org.

Welcome to the fold.

Ival