Swimming with ostomy: Any recommendations?

Posted by Pattyd @patdame, Dec 25, 2021

Does anyone know a good website to purchase protective gear for swimming in both pools and hot tubs? We are new to this group. My husband was diagnosed with stage 3 neuroendocrine cancer in September. If you have a good website we would certainly appreciate it.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) group.

Welcome to the NETs group @patdame. I also added your question to the Ostomy group (https://connect.mayoclinic.org/group/ostomy/) to connect you further with other ostomates.

@candywocrn and Charlene Germer, ostomy nurses at Mayo Clinic wrote this article that may interest you:
– Swimming with an Ostomy https://connect.mayoclinic.org/blog/ostomy/newsfeed-post/swimming-with-an-ostomy/

I wonder if there are swimmers among fellow ostomates like @duckduck2020 @tucsonguy @miriam57 @dideon @katydid77 @pjebp @engelee @05mick @smeegle?

I assume your husband has a GI NETs. How is he doing? How are you?

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@colleenyoung

Welcome to the NETs group @patdame. I also added your question to the Ostomy group (https://connect.mayoclinic.org/group/ostomy/) to connect you further with other ostomates.

@candywocrn and Charlene Germer, ostomy nurses at Mayo Clinic wrote this article that may interest you:
– Swimming with an Ostomy https://connect.mayoclinic.org/blog/ostomy/newsfeed-post/swimming-with-an-ostomy/

I wonder if there are swimmers among fellow ostomates like @duckduck2020 @tucsonguy @miriam57 @dideon @katydid77 @pjebp @engelee @05mick @smeegle?

I assume your husband has a GI NETs. How is he doing? How are you?

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Yes. He has crohns (diagnosed at age 17) regular colonoscopies every 2 years so we were shocked when the biopsies of the polyps showed malignancy. Had surgery, 10 cancerous tumors removed, 4 lymph nodes in mesentery were positive as well. It’s been quite an adjustment for both of us but we are okay. He also has a pituitary tumor with 80% removed in 2010. He’s still weak from surgery and has lost close to 50 pounds but he is at a healthy weight now. Hopefully the weight loss will level off. We are adjusting to the new normal. Thank you for asking.

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@colleenyoung

Welcome to the NETs group @patdame. I also added your question to the Ostomy group (https://connect.mayoclinic.org/group/ostomy/) to connect you further with other ostomates.

@candywocrn and Charlene Germer, ostomy nurses at Mayo Clinic wrote this article that may interest you:
– Swimming with an Ostomy https://connect.mayoclinic.org/blog/ostomy/newsfeed-post/swimming-with-an-ostomy/

I wonder if there are swimmers among fellow ostomates like @duckduck2020 @tucsonguy @miriam57 @dideon @katydid77 @pjebp @engelee @05mick @smeegle?

I assume your husband has a GI NETs. How is he doing? How are you?

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I don’t swim because of concern about bacteria in the water . How many little kids accidentally pee in the water?

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@patdame

Yes. He has crohns (diagnosed at age 17) regular colonoscopies every 2 years so we were shocked when the biopsies of the polyps showed malignancy. Had surgery, 10 cancerous tumors removed, 4 lymph nodes in mesentery were positive as well. It’s been quite an adjustment for both of us but we are okay. He also has a pituitary tumor with 80% removed in 2010. He’s still weak from surgery and has lost close to 50 pounds but he is at a healthy weight now. Hopefully the weight loss will level off. We are adjusting to the new normal. Thank you for asking.

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Hello @patdame

I would like to add my welcome to you as you recently joined Mayo Clinic Connect. I am glad that you posted about your husband's ostomy and interest in water activities including swimming.

I see that Colleen, @colleenyoung, posted some good information and websites. I also searched and found this website from the United Ostomy Associations of America. They discuss some interesting products that can be very helpful to those with ostomies who still want to be involved in water activities. Here is the link:
https://www.ostomy.org/swim-confidently-ostomy/
I can certainly appreciate that you were shocked when you learned that the polyps were now malignant. I take it that this diagnosis was more recent than the pituitary tumor in 2010. Is that correct?

Have all of these malignancies been diagnosed as NETs? I hope you are aware that Mayo Clinic holds a support group once a month for all people who have been diagnosed with NETs. The support group originates from Florida but is a Zoom meeting and people join from all over the country. There is a guest speaker every other month and it is usually a doctor or other medical professional who specializes in NET treatment. The meetings are facilitated by a Mayo Clinic Social Worker, Michelle Walsh. If you would like to reach her before the January meeting for more information, please just send a post to @michellewalsh. I'm sure she would be glad to provide more information.

I am pleased that you say, "We are adjusting to the new normal." It is a good attitude to have. It makes life much easier, doesn't it? I have had three surgeries for NET lesions in the duodenal bulb so I do understand the shock as well as the need for adjustments.

Is weakness your husband's main symptom right now? How is his appetite? Is he able to eat most foods or does he have restrictions and/or diarrhea?

REPLY
@hopeful33250

Hello @patdame

I would like to add my welcome to you as you recently joined Mayo Clinic Connect. I am glad that you posted about your husband's ostomy and interest in water activities including swimming.

I see that Colleen, @colleenyoung, posted some good information and websites. I also searched and found this website from the United Ostomy Associations of America. They discuss some interesting products that can be very helpful to those with ostomies who still want to be involved in water activities. Here is the link:
https://www.ostomy.org/swim-confidently-ostomy/
I can certainly appreciate that you were shocked when you learned that the polyps were now malignant. I take it that this diagnosis was more recent than the pituitary tumor in 2010. Is that correct?

Have all of these malignancies been diagnosed as NETs? I hope you are aware that Mayo Clinic holds a support group once a month for all people who have been diagnosed with NETs. The support group originates from Florida but is a Zoom meeting and people join from all over the country. There is a guest speaker every other month and it is usually a doctor or other medical professional who specializes in NET treatment. The meetings are facilitated by a Mayo Clinic Social Worker, Michelle Walsh. If you would like to reach her before the January meeting for more information, please just send a post to @michellewalsh. I'm sure she would be glad to provide more information.

I am pleased that you say, "We are adjusting to the new normal." It is a good attitude to have. It makes life much easier, doesn't it? I have had three surgeries for NET lesions in the duodenal bulb so I do understand the shock as well as the need for adjustments.

Is weakness your husband's main symptom right now? How is his appetite? Is he able to eat most foods or does he have restrictions and/or diarrhea?

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Thank you so much for all of the helpful info. All of my husbands care has always been at Mayo in Jacksonville. Can you send me a link to the zoom meeting? All of his malignancies are NET’s. The pituitary tumor was non cancerous but I wouldn’t wish it on my worst enemy. It affected his entire endocrine system and has caused all sorts of problems. Anyhow, thank you for your kind and informative response. If anyone can help us get the zoom link we’d be very grateful.

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@patdame

Thank you so much for all of the helpful info. All of my husbands care has always been at Mayo in Jacksonville. Can you send me a link to the zoom meeting? All of his malignancies are NET’s. The pituitary tumor was non cancerous but I wouldn’t wish it on my worst enemy. It affected his entire endocrine system and has caused all sorts of problems. Anyhow, thank you for your kind and informative response. If anyone can help us get the zoom link we’d be very grateful.

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Patty, here the link with more details about the monthly NETs meeting. They meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time
https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-108/
Please register in advance by clicking this link https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg

REPLY
@colleenyoung

Patty, here the link with more details about the monthly NETs meeting. They meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time
https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-108/
Please register in advance by clicking this link https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg

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Thanks. I tried to register but I guess I was too early lol.

REPLY
@colleenyoung

Patty, here the link with more details about the monthly NETs meeting. They meet monthly on the first Thursday every month from 5:30 to 7:00 p.m. Eastern time
https://connect.mayoclinic.org/event/neuroendocrine-cancer-support-group-meeting-fl-1-108/
Please register in advance by clicking this link https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg

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I did want to ask if anyone knows of a good website that sells NET merchandise. Also, any runs that anyone knows of that benefits NET research. I’m an avid runner and would love to support the cause. Thanks for being so supportive and helpful to us.

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@patdame

Thanks. I tried to register but I guess I was too early lol.

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Umm. I’ll get the right link for you tomorrow, Patty.

In the meantime, pencil it in your calendar. 🙂

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@colleenyoung

Umm. I’ll get the right link for you tomorrow, Patty.

In the meantime, pencil it in your calendar. 🙂

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@patdame, the social worker who runs the online support group is away for the holiday break. The link will be updated on Jan 3 or 4th.

I love that you're looking for NETs merchandise to wear while you run to further the cause.

REPLY
@colleenyoung

@patdame, the social worker who runs the online support group is away for the holiday break. The link will be updated on Jan 3 or 4th.

I love that you're looking for NETs merchandise to wear while you run to further the cause.

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Thank you so much!

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Hello @patdame

The Carcinoid Cancer Foundation offers a lot of "Luncheon with the Experts" where you can hear NETs professionals discuss topics related to carcinoid cancer. Here is the link to those discussions,
https://www.carcinoid.org/?s=Luncheon+with+the+Experts
Here is a website that offers NETs merchandise,https://www.choosehope.com/category/by-cancer-color-cancer-type/carcinoid-cancer-zebra-stripe/. The logo for NETs is a Zebra, indicating a rare disorder.

Is your husband beginning to get his strength back?

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