For the 3rd instalment of #UroStories, we have such an inspiring and lovely man called Rich Greene, who is 69 and lives in Columbus, Ohio, USA sharing his story. Rich touches on so many brilliant points in his answers that don't only effect urostomates but ostomates in general.
- Hi Rich, can you tell me a little about how you got your urostomy?
In March 2014, I received my urostomy because I had prostate cancer where the mass had invaded the bladder and it could not be salvaged. Both the prostate and bladder and other miscellaneous bits were removed. I also received a colostomy due to the removal of some of my rectum to give me better margins. The colostomy was reversed a few months later but the urostomy is permanent. I felt like I didn't do anything but monitor and change bags for the first few months. Because I had no lymph node involvement and no signs of distant metastases, the prostatectomy/cystectomy was performed. I had a particularly advanced and aggressive prostate cancer. Without the ostomies, I'd probably have died a few years ago.
- Wow, that must have been a lot to process. What do you feel is the toughest thing to deal with when living with a urostomy and how do you overcome this?
Finding the right combination of appliances, rings, powders, etc., was difficult for me. I think few folks find the right combination in the first couple of attempts. The local WOCN's were invaluable; the ones I had access to were knowledgeable and good spirited. Their positive outlooks were incredibly reassuring. They arranged free samples from several suppliers. I can still call them when I have questions but I haven't called lately. It's comforting knowing that they are available should I need them. The effect on body image can be huge. I've been overweight most of my life so my body image had already taken a hit. And now I had this "thing" attached to me. It took me a while before I could change clothes or shower at the gym. I thought I was a freak because I'd never seen a bag before. One thing that got me over the stigma of the bag was realizing that it wasn't my problem—if someone had a problem with my bag (or my scars), it's their problem. I've never encountered any negative reaction, only surprise and curiosity or indifference. Fortunately, there are many pictures and stories of positive body image available via the Internet now but those are a relatively new phenomenon. (Or, maybe I just didn't know where to look.) I wonder now how many ostomates I may have known in my life that I didn't know were ostomates? Also how many I might have dealt with on a regular basis. One thing that helps me get through the changes (even now) is to remember that, without my bag, I'd probably be dead. Instead, I can focus on the important things in life--like wanting to live long enough to see my grandsons decorate the top of the Christmas tree without standing on a ladder. Still working on that part of my bucket list!
- What piece of advice, hints or tips would you give to anybody who is about to have urostomy surgery and start this journey?
Interesting question right now because tomorrow I'm meeting with a neighbour who is scheduled for a cystectomy and she's an emotional wreck and considering not having it even though her doctor says it's the only option for her to address her cancer. My advice comes down to a few simple steps: Get a second opinion., learn all you can either through reading or chatting with someone, attending a support group or online groups. A urostomy is not something any of us know intuitively and they aren't discussed widely. Talk with a knowledgeable WOCN or stoma nurse. They can answer your questions about living with a stoma, show you samples, give you training kits, etc., so you can get more comfortable with the supplies and process. Remember that no matter how much you learn, it can still be a frightening and daunting adventure. But, there are many people who enter the world of urostomates every day and they learn to incorporate the ostomy into their lives. Having a urostomy is not a handicap. You can do everything you did before with your career and hobbies and family and friends. Seek professional counselling if you think it might help. Your family and friends might be sympathetic but they can't distance themselves from you enough from you. Some cancer centres provide free counselling. Check out all the free services you can find.
- That is so lovely that you are giving back to new urostomates. Are there any support groups, associations or online groups that have helped you live and accept your urostomy?
I found that an in-person support group for prostate cancer was invaluable. It gave me the moral support and information I needed at a time I was most vulnerable and at my weakest. So, I tried a local ostomy support group. Of about 100 members, there was only one other urostomate that regularly attended. The vast majority had a colostomy or ileostomy. Most of the meetings were social and not educational so I received little value from the programming. The most important gain I received was from looking around the room--these people looked normal and I couldn't tell they had ostomies. You can be sure I checked them all out. The absence of any obvious signs was encouraging. I've also gained insights from online support groups, especially the Ostomies and Prostate Cancer groups on Inspire. The members are extremely supportive of each other and the shared information is invaluable. No question is considered too small or too insane. I've even been able to participate which is reassuring too. I've checked out other online groups and have found the Inspire groups to be the best match for me. Not everyone will agree and that's okay. Some folks will not want to participate on in-person groups and/or online groups and that's their choice. I encourage people to sign up for the lists and monitor the posts. They can figure out if any of them are a good match and there's no requirement that anyone can participate. Lurking is perfectly acceptable but most groups are welcoming to new people.
- Do you feel there is a different level of awareness with the Healthcare Professionals regarding urostomies compared to the other stoma types?
Definitely. Urostomies are less common than other urostomies. Many times, I've had to talk through changing the bag with healthcare professionals because they've never seen a urostomy. My worst experience was when I needed a clean sample to check for a urinary tract infection. It's impossible to get one through the bag because the bag contaminates the urine. I went to three different labs at a local major university hospital system. The first two said they didn't know how to get a clean sample from a urostomy and wouldn't even try. At the third lab, there was a tech who knew what to do. I had told the first two that I knew how to do it but they refused to listen to me. If this happens again, I'll just tell them to "google it". That's how I taught myself. I've complained to the manager of the labs but don't know if any additional training was implemented. It shouldn't take 2 hours to get a clean urine sample because I had to drive to so many labs just to be dismissed. Each patient must become his own expert and advocate because there may not be anyone else to do it for them when they need it. The most rewarding experience was when I was hospitalized and mostly immobile and the bag started leaking. The night nurse had never seen a urostomy before but allowed me to talk her through the change. I needed another bag change a few nights later and the same night nurse came in and changed it with no problems and no hesitation and without my help. I was so proud!
- How do you feel we can raise awareness for urostomies within the general public?
This is a toughie. Ostomies seem to be treated publicly as dirty little secrets or "too much information". They deal with biologic functions that are not generally discussed in public. I think the problems with perception go beyond urostomies and include all ostomies. I've noticed an occasional mention on TV about ostomies, but not specifically urostomies. They're generally in legal or medical dramas and presented as a horrible tragedy that negatively affects the patient's life. That's not the message we want to send. Some folks have already begun going public. Models posing with ostomies. Ostomates posting pictures on Facebook. Calendars of ostomates. However, these do not have a widespread effect and are sometimes attacked for being inappropriate. Someday, I'd like to see Barbie and Ken dolls with physical accommodations for various illnesses. Make them main-stream and "normal" (whatever that means). There could be ostomates, dolls with multiple surgical scars, artificial limbs, etc. Make them as heroic and as admirable as other such dolls are. There are some stuffed animals available now but they're a one-off, not mainstream at all. Above all, offer no apologies for wearing a bag. It's a badge of courage, not a blemish or handicapped. Do not be ashamed. I'd love to see a stand-up comedian take on ostomies. There's lots of humour if you look for it. The jokes may not make sense to non-ostomates (the great unwashed) but the humour and acknowledgement will be public.
- When you are having a down day what one thing do you do to keep positive that you find helps?
One thing that helps me get through the bad times (even now) is to remember that, without the bag, I'd probably be dead or suffering. I think most ostomates have days when they are down and probably feeling sorry for themselves. I've had a few months on an anti-depressant and it helped immensely. During that time, I realized that it was up to me to deal with it. The down periods are much shorter now because I have so many positive things in my life. Sometimes just putting on the headphones and listening to music that moves me is sufficient. I have learned to identify and focus on the important things in my life--like wanting to live long enough to see my grandsons decorate the top of the Christmas tree without standing on a ladder. I created my bucket list and most of it is not extravagant or expensive at all. The doctor who gave me the diagnosis of advanced cancer gave me some advice in the same session that's seen me through many bad times. He told me I'd experience a lot of emotions and they were all normal. No one could tell me to stop feeling in a such-and-such way. These words allowed me to have negative feelings without regret or guilt. So, I go ahead and indulge myself when I feel overwhelmed knowing that I can turn it around when the time is right. The down times are shorter now and do not occur very often. At one time, I sought out an art therapist because I'd heard it might be useful for me. It was immensely helpful because it showed me I could choose to separate the positive from the negative so I could choose which to focus my energies on.
Wow, Rich what an amazing post and thank you so much for taking the time to write your answers. They have been extremely inspiring and lovely to hear that you are supporting your neighbour.