Research Colostomy

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saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
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Research Colostomy

Postby saltygirl » Wed May 12, 2021 4:55 pm

My daughter is premed and in her bioengineering class they focus on colon cancer. All opinions are appreciated. Thank you.

Hello I am a Stanford student researching better designs for Ostomy bags (Colostomy, Ileostomy, etc.). For those who have experiences with these devices, I would really appreciate your insight on what could be improved in the design of these Ostomy bags.

What are your largest concerns or complaints with ostomy bags?
What ideas do you have for improvement?
Do you feel this is a great need that should be addressed?

Thank you so much for your insight!
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Research Colostomy

Postby beach sunrise » Wed May 12, 2021 8:40 pm

I view it as utilitarian.
When researching this subject a while back I ran across pediatric issues and home remedies to modify the flange for children. Another avenue to explore if you haven't already.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Research Colostomy

Postby NHMike » Sun May 16, 2021 9:51 pm

Education plays a big part. There are a lot of products out there but discovery is challenging. You wake up out of surgery with this thing attached to you and you have to do care and maintenance of it for six months or the rest of your life depending on your situation. You get some training in the hospital and are discharged with a followup from a WOC nurse a few weeks later.

My initial problems were leaking and pain afterwards. My WOC meeting was delayed a month. At the meeting, she listened and gave me a different pouching solution. I also got some pointers on this forum for better barrier products and those generally solved my problems.

I receive literature from Coloplast and it appears that the regularly bring out new innovations.

This was three years ago - I would guess that things are somewhat better these days.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

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GreenLakeGirl
Posts: 777
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: Research Colostomy

Postby GreenLakeGirl » Sun May 23, 2021 3:37 am

Skin sensitivities to the adhesives. No real talk about how different brands may work for your skin, and how to try new styles.

Little real talk about disposable bags versus reusable bags, especially with regard to insurance reimbursement.

Doctors feeling like ostomies are a failure and a last resort.

Lack of skilled ostomy nurses.

Lack of knowledge about ostomy placement and ostomy care. Surgeons don't always do a thorough walk-through to get buy-in from patients.

Surgeons who feel like their responsibility ends with the surgery and don't follow up on the ostomy success...which is not just the surgical success, but also the quality of your life with the ostomy. This is not only due to your ostomy nurse! Surgeons should feel pride in your quality of life with an ostomy *after* you've healed from the procedure. Too many are just happy if you don't have any open wounds.

And finally? Openness about ostomies versus Jpouch. They are both called 'pouches', and I think it causes a lot of confusion. Internal versus external is really confusing when you are dealing with a new diagnosis and so much new information about cancer (or inflammatory bowel disease). Surgeons often make you feel like one is a failed option of the other instead of acknowledging that there are surgical complications that might cause one outcome over the other.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo


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