Rectal cancer (Stage 3A) diagnosed late June 2017

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rockhound
Posts: 113
Joined: Fri Jul 14, 2017 5:00 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby rockhound » Fri Dec 08, 2017 4:05 pm

O Stoma Mia wrote:
NHMike wrote:Learning Curve: The Surgeon as a Prognostic Factor in Colorectal Cancer Surgery (2005)

http://eknygos.lsmuni.lt/springer/404/86-104.pdf

Thirteen consultants, none of whom had a special interest in colorectal surgery, operated on 645 patients with colorectal cancer. Outcome differed tremendously between the individual surgeons. The rate of curative resection varied from 40% to 76%, postoperative mortality from 0% to 20%, local recurrence from 0% to 21%, anastomotic leakage from 0% to 25%, and survival at 10 years from 20% to 63%. These important differences in outcome were not entirely explained by differences in patient population (case-mix, e.g., more advanced tumor stage). The existence of a significant
inter-surgeon variability was hereby proven. The individual surgeon was later identified as an independent prognostic factor for the frequency of locoregional recurrence and survival in rectal cancer patients by applying multiple logistic regression analysis adjusting for case mix differences (Hermanek et al. 1995). A great number of publications followed, investigating the prognostic role of the surgeon as well as of surgeon- and hospital-related factors (e.g., board certification, subspecialty training, annual caseload, teaching status). Most tumor-related, patient-related, and treatment-related predictors of outcome cannot be altered. The majority of surgeon- and hospital-related factors, however, can be influenced positively. Herein lies great promise, since an enhancement of surgeon and hospital related factors will lead to a significant improvement in the patient’s outcome.


Thanks for posting this. This is a very important finding, especially for the case of rectal cancer surgeons.
.



And people don't seem to value expertise to an extent anymore.. I would only want an experienced colorectal surgeon (board-cert) at a high-volume center to do my surgery. Everything in that paper points to more experience = better short and long-term patient outcomes. I doubt this has changed in the last 10 years either! Thanks for sharing.
45 yr old male
Diagnosed December 2016, age 41
Stage 1/IIA rectal cancer - T2/3N0M0 via MRI (MRI indicates stage 1; onc/surgeon = stage 2a)
Lynch syndrome, MSH6 mutation, MSI
2 to 3/2017 Xeloda + Radiation
5/10/17 - Robotic LAR with temp. loop illeostomy, 0/20 lymph nodes
6 to 7/2017 - Six cycles Folfox @ full strength
9/20/17 - Ileostomy takedown
10/17 - CT, NED
5/18 - CT, NED
11/18 - CT, NED
5/19 - CT, NED..moving to yearly CT scans
5/20 - CT, NED
5/21 - CT, NED (4 yr. scan)

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby mpbser » Fri Dec 08, 2017 4:40 pm

Agreed. That is why my husband and I went with the colorectal surgeon we did at Mass General. High volume, for sure.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Dec 08, 2017 6:40 pm

mpbser wrote:Agreed. That is why my husband and I went with the colorectal surgeon we did at Mass General. High volume, for sure.


This is why the hospitals in Southern NH have Boston Hospital Envy. The folks up here go to the local hospitals for the easier stuff. Anything difficult and they run down to Boston. The study on high volume hospitals vs highly skilled at regular hospitals was interesting.
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

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Dec 08, 2017 6:46 pm

I got my Coloplast Mio sample kit today. I was just expecting an envelope with on Mio bag. But they sent a box and it was actually heavier than I expected. They sent me three Mio one-piece appliances, a nice kit with barriers, some liquid or creme I think, a mirror with Velcro, a pen, some small circular rings, scissors and a stomaguide. There's also a DVD with what I assume is videos on how to use this stuff. It has a hook so you can hang it on the back of a door.

I ordered a three-pack of Cavilon from Amazon but I didn't have the name of the powder and I did want to order that. The names and reference numbers are on an index card in the bag of my ostomy supplies and didn't have it with me at the office when I placed the order. It struck me that I'll have to use my old supplies (like the towelettes) until I can get the Cavilon and powder unless I can find them in a local store. I also ordered another Convatec belt which I'll leave in my gym bag in case I forget to put it on. I've heard of people buying a bunch of them - I guess that's reasonable if you work out a lot.
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

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Aqx99 » Fri Dec 08, 2017 7:31 pm

I wear my ostomy belt 24/7. It helps keep my covex pouch pulled tight to my belly so my stoma sticks out more. It needs all the help it can get because it sits flush and sometimes below the surface of my skin.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby heiders33 » Fri Dec 08, 2017 11:41 pm

I had my first bag blowout tonight. Thankfully I was near home. I switched to the Eakin ring yesterday to try it out and clearly it did not hold up. I’m back to the Coloplast Brava ring and sticking with it. My poor skin - I had to take a shower and do some serious skincare before putting the new bag on.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Aqx99 » Sat Dec 09, 2017 12:23 am

heiders33 wrote:I had my first bag blowout tonight. Thankfully I was near home. I switched to the Eakin ring yesterday to try it out and clearly it did not hold up. I’m back to the Coloplast Brava ring and sticking with it. My poor skin - I had to take a shower and do some serious skincare before putting the new bag on.


It won't be your last. I bent over to tie my shoe once and mine blew on me. Luckily I was at home at the time.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Dec 09, 2017 2:27 am

heiders33 wrote:I had my first bag blowout tonight. Thankfully I was near home. I switched to the Eakin ring yesterday to try it out and clearly it did not hold up. I’m back to the Coloplast Brava ring and sticking with it. My poor skin - I had to take a shower and do some serious skincare before putting the new bag on.


I haven't had this happen to me outside of home but this nice Coloplast bag is certainly an encouragement to build an emergency kit. I'm curious as to why using a particular ring would increase the chances of a blowout. Does this decrease the amount of adhesive for the wafer?

I normally wake up at 1:00 AM and 4:30 AM to empty the bag. I was particularly tired tonight so I woke up at 2:00 AM instead (my alarm did go off, I just closed it and went back to sleep). The bag was puffy which means that the vent has failed so it was good that I emptied it. Waiting until the morning would have been dangerous. I'm not crazy about waking twice early morning but I'd rather do that then have a mess. I guess experimenting with different stuff has some risks with it.
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

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby heiders33 » Sat Dec 09, 2017 6:39 am

I think I used the wrong term when I said “blowout.” The bag was still intact; rather, the stool had gotten past the ring and was leaking out the bottom. I had been feeling lots of stinging and was pretty horrified when I saw that. When I removed the bag I could see that stool had gotten past every part of the ring. I had been wearing the appliance less than 48 hours. I don’t know why this would happen with a particular ring, but it might be because I was using the Eakin ring that’s designed for more frequent bag changes. I switched back to the Brava. Hopefully that never happens again.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy

Aqx99
Posts: 403
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Aqx99 » Sat Dec 09, 2017 7:33 am

heiders33 wrote:I think I used the wrong term when I said “blowout.” The bag was still intact; rather, the stool had gotten past the ring and was leaking out the bottom. I had been feeling lots of stinging and was pretty horrified when I saw that. When I removed the bag I could see that stool had gotten past every part of the ring. I had been wearing the appliance less than 48 hours. I don’t know why this would happen with a particular ring, but it might be because I was using the Eakin ring that’s designed for more frequent bag changes. I switched back to the Brava. Hopefully that never happens again.


Typically, the weakest point is where the pouch adheres to your skin. My first blow out was after eating a pasta meal and having gas build up in my pouch overnight. I woke up to a rock hard pouch that had lifted itself off my skin and made a mess in my bed.

I use Eakin rings and normally wear my pouches for 4 days. It could be it didn't bond well to your skin. Trial and error is the only way to find these things out! Keep using what works and ditch what doesn't.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Dx, Age 39
2/21/17 CEA 0.9
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Dx w/ovarian cancer
9/6/17 CA 125 11.1
11/27/17 CEA 2.6
12/5/17 CT NED
12/13/17 CEA 2.9
1/11/18 CA 125 8.6
1/23/18 Reversal
3/21/18 CT enlarged thymus
4/6/18 PET NED
7/10/18 CT NED
7/11/18 CEA 2.6
9/18 Bilateral Prophylactic Mastectomy

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Dec 09, 2017 3:38 pm

I had a close look at the Convatec flange. Facing the front of the flange, there are the belt tabs at 3:00 and 9:00 which, of course, I use with my belt. But I also noticed a tab at 11:00 and wondered what that was for. Could it be for a shoulder strap? I did some digging and found a patent description from Bristol-Meyers Squibb describing the flange that Convatec uses (I assume that they license from BMY). The patent indicates that the all three tabs can be used for leverage when putting the bag on the flange while it's attached to the body by putting the thumb under the tabs and using the fore- and index-fingers over the bag and pressing. There was nothing in the patent description about using the third tab for additional support and there's only one attachment point so it couldn't be offset without using some form of leverage against the other two points (with the belt).
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

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby MissMolly » Sat Dec 09, 2017 5:43 pm

“Blow outs” (I.e. failure of a wafer with dramatic leaking of liquid ileostomy fecal output) will invariably happen from time to time.

Sometimes “blow outs” just happen, a perfect storm of incidental events that contribute to a wafer (and barrier ring) losing contact with the skin. A wafer that is well-applied forms an air-tight and water-tight seal with the skin. The adhesion of a wafer to the skin comes about from a chemical reaction of the hydrocolloid matrix that forms the wafer with the body’s natural heat/temperature. A tight seal depends on the body’s heat activating the hydrocolloid matrix.

Tips to make sure that a wafer bonds completely with the skin:
a. Make sure that the paristomal skin is completely dry and taut (no skin wrinkles, no skin folds). Often lying down is the best position to apply a wafer, as the skin has a flatter surface when supine as opposed to standing upright.

b. Avoid any skin care products that have aloe, moisturizers, or oils. Avoid any soaps or body wash with oils or moisturizers. Safe soaps to use: Ivory bar soap; Neutrogenia bar soap for sensitive skin; any glycerin bar soap; Zest; Basis. Avoid using baby cleaning wipes. The use of baby cleaning wipes will adversely affect wafer adhesion and contribute to “blow outs” (as baby wipes contain moisturizers and aloe). Safe ‘N Simple beans makes a moistened wipe designed specifically to clean pariatomal skin. Safe ‘N Simple Paristomal Skin Wipes are available from any ostomy supply provider (Byram Healthcare, EdgePark, Sterling Medical Supply).

c. Pre-warming a new wafer and barrier ring can help maximize adhesion to the skin. Use of a blow-dryer on the wafer to warm the hydrocolloid material or placing the wafer in the dryer on low setting x 1 minute are both ways to pre-warm a wafer and contribute to an air-tight and water-tight seal. You can also place a warm buckwheat pack on the abdomen for a few minutes after placing a wafer. The exogenous heat adds to the body’s warmth to maximize the chemical reaction that bonds a wafer to the skin. Avoid strenuous movement for 15-30 minutes after applying a new wafer. Allow time for the skin-wafer seal to effectively set.

d. Recognize that the temporary loop ileostomy is the most challenging of ostomy types to pouch successfully. The loop ileostomy is positioned further up the segment of small intestine than an end ileostomy. The end result is loop ileostomies have a high percentage of caustic digestive enzymes that will degrade even the most protective/effective barrier ring.

Do not go more than 3-4 days between wafer changes. Some people will need to change their wafer and barrier ring every 2-3 days. Do not try to boast about long weartime. Long wear time is for individuals with a colostomy (fecal output has low/minimal digestive enzymes).

Remember that everyone’s skin has unique characteristics. Some people have oily skin. Some people have thin/frail skin. Each manufacturer has slight differences in ingredients that compose their wafers. People will like or dislike different manufacturer brands based on how their skin bonds to the hydrocolloid wafer. Some people love Hollister while other people will dislike Hollister, just as other people will like or dislike Coloplast or ConvaTec. This is why sampling a wide range of ostomy products is helpful and necessary. What you were sent home with from the hospital may not be the ideal set-up for you. Call different ostomy manufacturers and request samples of wafers, adaptic barrier rings (analogous to a gasket in a faucet) and pouches. It is worth the time and effort of trial and error to find the optimal pouching system for you.

d. Avoid the use of ostomy paste on a wafer. Ostomy paste has no adhesion qualities. Ostomy paste is meant to fill dips and divots in the skin to make a level skin surface. Ostomy paste is amplifies to grout used in the laying of ceramic tile.

e. Lying supine at night makes a wafer more vulnerable to leaks. This is because the liquid ileostomy output pools around the stoma whrn lying supine. Just as MikeNH is doing, getting up in the middle of the night to empty the pouch can be helpful to minimize potential of a leak. It can be a good safety policy to empty the pouch at least one time during the deep nighttime hours.

You want the full surface of a wafer with an adaptic barrier ring to have full contact with the skin. The wafer and barrier ring will make an impervious seal with the skin (airtight and water tight).

The most popular adaptic barrier rings are the Ekin Cohesive Adaptic Ring (by ConvaTech) and the Brava Adaptic Ring (by Coloplast). Barrier rings snug up to the stoma and give added protection to liquid fecal output undermining a wafer and causing a “blow out.” Which ring serves you best is individualistic.

Keeping a sense of humor is also invaluable. Wafer leaks will happen. It is helpful to keep a sense of humor when confronted with a leak.
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

texazgal
Posts: 161
Joined: Fri Sep 28, 2007 4:40 pm
Location: central Texas

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby texazgal » Sat Dec 09, 2017 5:47 pm

I use the 11 o'clock tab to burp the pouch. This can be dangerous if it's not just air puffing up. It's also useful to remove the pouch if you are using closed end systems and need to change the whole pouch for clean one.
DX rectal cancer Aug 04
Surgery Sept 04, perm ostomy, "BarbieButt" Sept 23, 04.
June 2019 stage 3 esophageal cancer
Aug. 2019 28 radiations, 5 chemo
Nov. PET shows original tumor and mets resolved, 2 new mets in liver and bone.
May 2020 port installed, started Folfox hope to do 12 rounds, cure not expected
Keytruda April 2021 8 rounds
scan showed small growth in tumors
Paclitaxol started summer 2021.
Scan July 30, 2021 showed small decrease in size of tumors in liver and bone

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sat Dec 09, 2017 6:34 pm

texazgal wrote:I use the 11 o'clock tab to burp the pouch. This can be dangerous if it's not just air puffing up. It's also useful to remove the pouch if you are using closed end systems and need to change the whole pouch for clean one.


Okay, now I know what it means to burp the pouch. I had wondered about the term but it appears to mean opening the flange seal to let out air. I have not successfully put a bag on a mounted wafer because it seems to require considerable pressure to do so but opening it up a little sounds safe. The patent diagrams show why the flange seals are so strong as they have gripper pieces on opposing sides going around the flange.

I haven't tried any of the closed-end systems as they seem like they don't hold that much and I'm getting pretty good at emptying the bag.
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

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

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Dec 10, 2017 12:19 am

MissMolly wrote:“Blow outs” (I.e. failure of a wafer with dramatic leaking of liquid ileostomy fecal output) will invariably happen from time to time.

Sometimes “blow outs” just happen, a perfect storm of incidental events that contribute to a wafer (and barrier ring) losing contact with the skin. A wafer that is well-applied forms an air-tight and water-tight seal with the skin. The adhesion of a wafer to the skin comes about from a chemical reaction of the hydrocolloid matrix that forms the wafer with the body’s natural heat/temperature. A tight seal depends on the body’s heat activating the hydrocolloid matrix.

Tips to make sure that a wafer bonds completely with the skin:
a. Make sure that the paristomal skin is completely dry and taut (no skin wrinkles, no skin folds). Often lying down is the best position to apply a wafer, as the skin has a flatter surface when supine as opposed to standing upright.

b. Avoid any skin care products that have aloe, moisturizers, or oils. Avoid any soaps or body wash with oils or moisturizers. Safe soaps to use: Ivory bar soap; Neutrogenia bar soap for sensitive skin; any glycerin bar soap; Zest; Basis. Avoid using baby cleaning wipes. The use of baby cleaning wipes will adversely affect wafer adhesion and contribute to “blow outs” (as baby wipes contain moisturizers and aloe). Safe ‘N Simple beans makes a moistened wipe designed specifically to clean pariatomal skin. Safe ‘N Simple Paristomal Skin Wipes are available from any ostomy supply provider (Byram Healthcare, EdgePark, Sterling Medical Supply).

c. Pre-warming a new wafer and barrier ring can help maximize adhesion to the skin. Use of a blow-dryer on the wafer to warm the hydrocolloid material or placing the wafer in the dryer on low setting x 1 minute are both ways to pre-warm a wafer and contribute to an air-tight and water-tight seal. You can also place a warm buckwheat pack on the abdomen for a few minutes after placing a wafer. The exogenous heat adds to the body’s warmth to maximize the chemical reaction that bonds a wafer to the skin. Avoid strenuous movement for 15-30 minutes after applying a new wafer. Allow time for the skin-wafer seal to effectively set.

d. Recognize that the temporary loop ileostomy is the most challenging of ostomy types to pouch successfully. The loop ileostomy is positioned further up the segment of small intestine than an end ileostomy. The end result is loop ileostomies have a high percentage of caustic digestive enzymes that will degrade even the most protective/effective barrier ring.

Do not go more than 3-4 days between wafer changes. Some people will need to change their wafer and barrier ring every 2-3 days. Do not try to boast about long weartime. Long wear time is for individuals with a colostomy (fecal output has low/minimal digestive enzymes).

Remember that everyone’s skin has unique characteristics. Some people have oily skin. Some people have thin/frail skin. Each manufacturer has slight differences in ingredients that compose their wafers. People will like or dislike different manufacturer brands based on how their skin bonds to the hydrocolloid wafer. Some people love Hollister while other people will dislike Hollister, just as other people will like or dislike Coloplast or ConvaTec. This is why sampling a wide range of ostomy products is helpful and necessary. What you were sent home with from the hospital may not be the ideal set-up for you. Call different ostomy manufacturers and request samples of wafers, adaptic barrier rings (analogous to a gasket in a faucet) and pouches. It is worth the time and effort of trial and error to find the optimal pouching system for you.

d. Avoid the use of ostomy paste on a wafer. Ostomy paste has no adhesion qualities. Ostomy paste is meant to fill dips and divots in the skin to make a level skin surface. Ostomy paste is amplifies to grout used in the laying of ceramic tile.

e. Lying supine at night makes a wafer more vulnerable to leaks. This is because the liquid ileostomy output pools around the stoma whrn lying supine. Just as MikeNH is doing, getting up in the middle of the night to empty the pouch can be helpful to minimize potential of a leak. It can be a good safety policy to empty the pouch at least one time during the deep nighttime hours.

You want the full surface of a wafer with an adaptic barrier ring to have full contact with the skin. The wafer and barrier ring will make an impervious seal with the skin (airtight and water tight).

The most popular adaptic barrier rings are the Ekin Cohesive Adaptic Ring (by ConvaTech) and the Brava Adaptic Ring (by Coloplast). Barrier rings snug up to the stoma and give added protection to liquid fecal output undermining a wafer and causing a “blow out.” Which ring serves you best is individualistic.

Keeping a sense of humor is also invaluable. Wafer leaks will happen. It is helpful to keep a sense of humor when confronted with a leak.
Karen


I sleep with a pile of four pillows, three under my head and one under my back. I tried sleeping on a recliner and it works but it's not as comfortable as a bed. There are foam wedges that are fairly inexpensive and I was thinking of trying one of them.
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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