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by JP66
Thu May 23, 2024 3:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anti oxidant supplements more harm than good??
Replies: 8
Views: 165

Re: Anti oxidant supplements more harm than good??

I am not a doctor so my opinion is just that - an opinion. So I hope you will ask your oncologist what he or she thinks about you taking a specific supplement. Now having said that I will add that I read research reports A LOT. I have a second medical condition called Spinocerebellar Ataxia Type I a...
by JP66
Sun May 19, 2024 8:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Newbie, need advice (caregiver)
Replies: 7
Views: 330

Re: Newbie, need advice (caregiver)

Hi All, I'm so glad to find this forum and I'm already reading a lot of useful posts and links. My husband (52) is newly diagnosed T3N1M0 RC. Current plan is TNT followed by TME or watch-and-wait if justified. CRT starts next week and I'm trying to get ready as best I can. What was most useful to h...
by JP66
Sun May 19, 2024 8:06 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: LARS improvements
Replies: 2
Views: 168

Re: LARS improvements

Thanks for sharing! I realize everyone's journey is slightly different, but the mere fact that after 4 years you persevered and found improvement is wonderful. I still have a long road in front of me as my LAR surgery is scheduled for May 30th, but I've bee scouring this forum and elsewhere looking ...
by JP66
Wed May 15, 2024 2:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

R_R, Sorry to lean on you so much here, but searching just doesn't seem to get many answers, and I have 2 new questions. 1) Did you find wearing your bag horizontally or vertically was easier with your StealthBelt? 2) Did you have a Loop Ileostomy with an irregular stoma or an End Ileo w/ a nice rou...
by JP66
Wed May 15, 2024 2:01 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: STAGE IV RC GUYS AND GALS
Replies: 72
Views: 25900

Re: STAGE IV RC GUYS AND GALS

Paige/Utahgal7, I was just searching through posts on an ileostomy and came across a post of yours saying that you were having difficulty post reversal as a result of your LAR surgery. What I was wondering was whether your situation improved over time and was there anything you think you did to help...
by JP66
Tue May 14, 2024 4:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 42
Views: 10990

Re: Questions for the LAR surgeon

I don't think I ever said "thank you" for these. I didn't use them all, but it really was helpful in guiding me to ask WAY more questions than I would have on my own. So, I'm scheduled for a meeting with my surgical oncologist ... [February 19th] ... so I'm looking for any advice from the ...
by JP66
Sat May 11, 2024 7:13 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

Good to know what your focus areas are Joe! 1. My view is if something it’s important to you, it can be made to happen. Veganism could be tricky but surely not impossible. The problem is that high insoluble fibre foods are notorious for causing ileostomy complications, however high soluble fibre is...
by JP66
Fri May 10, 2024 3:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

Wow. Just reading through some threads here and on the other forum, and it appears people's experiences are all over the place so more likely this will be a case of wait and see what issues I run into. My concerns at the moment 1) maintaining my veganism 2) taking a shower and 3) life after reversal...
by JP66
Fri May 10, 2024 2:26 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Re: Old topic sorry. Advice for living w/ ileostomy?

Hello, My mom had an ileostomy placed almost 1.5 years ago due to rectal cancer. She hated it at first but has really gotten used to it. Some tips: -Ask questions to the Wound Care/Ostomy Nurses. They are the best and really know a lot and can answer a lot of your questions. Much more helpful than ...
by JP66
Wed May 08, 2024 5:49 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Old topic sorry. Advice for living w/ ileostomy?
Replies: 12
Views: 551

Old topic sorry. Advice for living w/ ileostomy?

Coming up on surgery on May 30th, 2024 and will end up with a temporary ileostomy for 4 months. Any advice from those that have already done this?
by JP66
Mon May 06, 2024 11:12 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Trial update - VAXINIA CF33 - it’s over
Replies: 9
Views: 1437

Re: Trial update - VAXINIA CF33 - it’s over

Ditto for me.

Know this . . . you are an inspiration because of the strength you show here, your willingness to keep trying to help others, and your willingness to try a trial.

You're AWESOME!
by JP66
Tue Mar 05, 2024 10:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Bit anxious
Replies: 6
Views: 3133

Re: Bit anxious

We're all different and what works for one of us may not be helpful to others, but I found I could eliminate my physical feelings of anxiety after my initial diagnosis of Stage IV through meditation. Here's a link to the very simple technique that worked for me. https://youtu.be/v2mY36Ho1Sk?si=uA9BC...
by JP66
Tue Mar 05, 2024 9:19 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 42
Views: 10990

Re: New guy with old questions.

Two thoughts for today. First I will list all the items being tested every 2 weeks and ask if I should create a spreadsheet with these items or some sub-set and if there are tests not being performed that people here would recommend. Items now being checked are: WBC, RBC, Hgb, Hct, MCV, MCH, MCHC, R...
by JP66
Thu Feb 29, 2024 5:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 42
Views: 10990

Re: New guy with old questions.

I consider my self fairly diligent in online homework when it comes to my health, but I have to admit your research and advocacy on behalf of your wife are simultaneously daunting and inspiring. Hopefully I can pick up on some of what you have learned before the time comes to decide on which surgery...
by JP66
Wed Feb 14, 2024 8:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Re: New guy with old questions.
Replies: 42
Views: 10990

Re: New guy with old questions.

RP, Thank you for that thoughtful and helpful reply, very interesting. It brings to mind a couple of my own thoughts and questions. First, before settling on my current team of doctors I did engage a team from Memorial Sloan Kettering in NY. Initially their plan included Total Neo-adjuvant therapy o...

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