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by hawkowl
Sat Feb 03, 2018 9:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: those of you with a colostomy
Replies: 14
Views: 2782

Re: those of you with a colostomy

As others have said...it just takes a little time. I have been a permanent ostomate for 2 1/2 years and made a deliberate decision early on to never be ashamed of my ostomy, and to never let it limit me. Over time I have learned how to adjust my diet when I want a silent stoma, amd what appliances w...
by hawkowl
Fri Feb 02, 2018 11:19 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Crohn's Disease or Ulcerative Colitis people out there?
Replies: 13
Views: 3648

Re: Any Crohn's Disease or Ulcerative Colitis people out there?

I have a long history of inflammatory arthritis (psoriatic) with unspecified IBD. Had taken sulfasalizine for years, and was treated with Humira for the three years leading up to my diagnosis
by hawkowl
Fri Feb 02, 2018 8:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer - Standard of Care Approach or Neoadjuvant Chemo approach???
Replies: 30
Views: 8009

Re: Rectal Cancer - Standard of Care Approach or Neoadjuvant Chemo approach???

On the other hand, many (perhaps even most) researchers use this same argument ("rogue" cells constantly being shed by the primary tumor and winding up elsewhere) as the primary reason to start with systemic neoadjuvant chemo rather than waiting until after resection. Otherwise, treatment ...
by hawkowl
Thu Feb 01, 2018 8:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Control
Replies: 9
Views: 1853

Re: Control

Carry along a WAG bag when you are away from facilities. I have traveled all over the world as an ostomate including remote parts of Asia and Africa. No bathroom? No problem :-)

Cleanwaste Wag Bags Toilet Kit Pack of 6 https://www.amazon.com/dp/B01M8MG817/re ... CAbY21VDNX
by hawkowl
Thu Feb 01, 2018 5:49 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery
Replies: 595
Views: 303972

Re: Rectal Cancer: Habr-Gama Watch and Wait Strategy to Avoid Surgery

While I opted against w/w (even though I had a complete clinical response, and my pathology showed a pCr as well), I do feel it is certainly a valid option for those wishing to avoid LARS or a permanent stoma. I am happy with my decision, as I'm a belt plus suspenders kind of guy, and being an ostom...
by hawkowl
Thu Feb 01, 2018 10:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal Cancer - Standard of Care Approach or Neoadjuvant Chemo approach???
Replies: 30
Views: 8009

Re: Rectal Cancer - Standard of Care Approach or Neoadjuvant Chemo approach???

I did the full neoadjuvant FOLFOX protocol for 8 cycles. Follow up staging after 6 cycles showed dramatic response and I was offered option of avoiding chemoradiation but opted to proceed with that because of some preliminary data that suggested it might decrease risk of local recurrence My follow u...
by hawkowl
Thu Dec 28, 2017 7:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Facing a permanent stoma
Replies: 41
Views: 6783

Re: Facing a permanent stoma

I like the idea of "wearing" a bag filled with applesauce to give you a better idea of what to expect! Everyone is different when it comes to bag choices/clothing. I am a big fan of ostomy secrets wraps because I am very active and don't like the bag swinging back and forth, and don't want...
by hawkowl
Thu Dec 28, 2017 1:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Facing a permanent stoma
Replies: 41
Views: 6783

Re: Facing a permanent stoma

I also agree: location, location, location! And find out how to get samples so you can try out different brands and styles. I wished I had been warned more about hernias; I would have purchased a lift chair sooner. Mostly don't worry about the ostomy. For me it is no big deal and doesn't limit me on...
by hawkowl
Thu Dec 07, 2017 10:12 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: For Stage III's: NED for how long now?
Replies: 836
Views: 405321

Re: For Stage III's: NED for how long now?

Diagnosis 12/11/2014
"NED" at time of surgery 8/12/2015
Scans and CEA remain stable as of 10/2017
by hawkowl
Thu Dec 07, 2017 10:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling “NED”
Replies: 12
Views: 2728

Re: Feeling “NED”

It has been more than two years since I completed therapy. Over time I have learned to live with the fear and uncertainty. I realize that the uncertainty will always be a part of my life, but that it doesn't need to be an impediment to finding joy and being at peace. I worked with a STAR certified t...
by hawkowl
Mon Dec 04, 2017 6:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: auto immune disorder after chemo
Replies: 8
Views: 1667

Re: auto immune disorder after chemo

I have an autoimmune disorder (psoriatic arthritis and sponyloarthropathy with HLA B27 positivity). It actually improved for a bit after chemo but I did develop neuropathy and dysautonomia. My arthritis and psoriasis are back now. I actually wonder if the played a role in my cancer as i had a bit of...
by hawkowl
Mon Dec 04, 2017 6:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: How much margin for stoma with cut-to fit?
Replies: 20
Views: 2732

Re: How much margin for stoma with cut-to fit?

I am a huge fan of the moldable barriers rather than cut to fit. I use convatec natura convex, apply adapt stoma paste where there is a small divot on my skin (and where leaks usually started), then apply an eakin slim ring, and then the barrier. Almost never have leaks or even itching or irritation...
by hawkowl
Mon Dec 04, 2017 6:36 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dysautonomia, a new thing?
Replies: 26
Views: 4406

Re: Dysautonomia, a new thing?

Regarding compression garments: I have not tried them. I live in a warm and humid climate and have peripheral neuropathy as well. I hate wearing tight fitting clothing and can't stand the feeling of even regular socks on my feet. Not sure I could do the garments...
by hawkowl
Mon Dec 04, 2017 6:32 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HIPEC - MY BFF W/Appendix Cancer
Replies: 19
Views: 9616

Re: HIPEC - MY BFF W/Appendix Cancer

I wish her well!! I have a cousin who lives overseas and had HIPEC for appendix ca and peritoneal mets. Here surgery was about 3 1/2 years ago and she remains NED and off all chemo. She is doing great, and I hope your BFF has a similar experience!!
by hawkowl
Fri Dec 01, 2017 11:04 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My dad just got diagnosed with colon cancer
Replies: 8
Views: 1816

Re: My dad just got diagnosed with colon cancer

Moffitt is very well respected. My sister is an internist in the Tampa Bay area and I seriously considered undergoing treatment there, but in the end opted to stay closer to home (Minnesota at that time)

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