1st MRI tomorrow after Neoadjuvant therapy

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Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Sun Sep 17, 2017 4:40 pm

Thank you Karen,

As it is, I get 75 pouches a month, and yes, they will up it if needed. Butt 75 seems to work for me.

What I eat does effect my bowels, I am a lot more stricter with my diet on the week days, looser on the weekend. Generally major output happens on the weekends with a lot more liquid, so rather than change it after some output, I tend to wait until the next output. It tends to go a little here and little more later on. When my pouch is a 1/3 to half full, believe me I do change it. Or if there is ANY odor, again, I will change it. If I am out with friends and eat certain foods that I know will cause more liquid output, I will change it every time. It's a system that seems to work for me.

Some days I have just formed stools, those are day, I only need to change once a day.

Thanks again,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby MissMolly » Sun Sep 17, 2017 5:23 pm

Lee:
That's Good (and appropriate) that you have a higher allocation of 75 pouches per month. I just wanted to make sure that you knew that you did not need to be constrained by 60 closed-ended pouches a month and feeling the need to be overly frugal.

Other individuals new to an ostomy can be put at ease knowing that they, too, can seek a higher allotment of ostomy supplies than the Medicare standard - for pouches, adaptic Ekin seals, skin protectant spray/wipes, and other accessory supplies.

There are two different coupling systems for two piece ostomy systems 1. Press-and-click Tupperware-type coupling; 2. Adhesive coupling.

The adhesive coupling systems are gaining in popularity as the systems are lower in profile, more pliable and flexible (there is no rigid plastic ring), and less apt to come apart/failure. If you have not tried an adhesive coupling system, I highly recommend them. Adhesive coupling systems are The Best.
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.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Sun Sep 17, 2017 5:32 pm

MissMolly wrote:Lee:

There are two different coupling systems for two piece ostomy systems 1. Press-and-click Tupperware-type coupling; 2. Adhesive coupling.

The adhesive coupling systems are gaining in popularity as the systems are lower in profile, more pliable and flexible (there is no rigid plastic ring), and less apt to come apart/failure. If you have not tried an adhesive coupling system, I highly recommend them. Adhesive coupling systems are The Best.
Karen


I may need to check out the adhesive coupling. I assume it's a one piece system. How often does it need to be changed? As it is, I wear a hernia belt, the belt and the pouch are equal in height, butt I understand what you are saying about a low profile being better for certain people.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby ocstacy » Sun Sep 17, 2017 10:35 pm

A few months following my surgery, I was on an all day trip with my son and his classmates, one teacher was asking me a lot of question about my colostomy. She finally told me about her neighbor who was diagnosed 6 months prior to me. Seem this neighbor has no real life anymore due to bathroom issues. Teacher said you chose the "bag" and she did not. I know understand you made the right decision.


Hope this helps, again if you have any questions, fire away. You are being a great daughter for your mom. She is very fortunate to have. Never feel guilty if you think you have done something. You have nothing butt the best intentions for your mom.


Thank you Lee for sharing your experiences with me. Lee, are you a male or female? Yes, my mom has no life anymore, however, yesterday she spent the whole day with her best friend at her home so that was positive. I had a long talk with my father this morning about my mom and her surgery. My dad doesn't have the slightest clue on the surgery or the outcome. My brother is a d*Psh*t and put my parent's home in his name so I'm dealing with that. I can't even go over to my own parents home because now it's my brother's home!! I'm so upset. :cry: He will not even talk to me about my mom's health, or even talk to her. It's a very sad situation. My dad agrees for her to have the permanent due to her recent lifestyle changes. We chose this colorectal surgeon in Los Angeles because the Dr. mentioned to us that he could save her sphincter muscle and do a reversal. However, he did mention that her muscles will not be as strong. At this point, I think my mom needs to listen to the chief surgeon and decide. I am her DPOA and ACD and if she was mentally incompetent than I would choose permanent so she could enjoy a much more livable lifestyle. We won't know until 09/25 the results of the MRI which is super nerve-racking. I hate waiting. It is my mom's desire to go back to Japan to visit her family again. I really want to take her there when she feels more comfortable. Do you think a 12 hour plane flight is feasible? I am uncertain what happens after MRI. do they tell you if you have an option to choose perm or temp? If you choose perm, someone mentioned they surgically sew you shut, but still able to urinate. KIT
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Sun Sep 17, 2017 11:35 pm

ocstacy wrote:Thank you Lee for sharing your experiences with me. Lee, are you a male or female? Yes, my mom has no life anymore, . . .


For the record, I am a (drum roll). . . female!!!

So I do understand what your poor dear mother has has to endure radiation wise, believe me, been there done that. And there have been a lot of improvement since my days of radiation . . .

When I found our about my rectum muscles loss, I'm like okay, NOW I understand what is happening to me, I would have accepted WHATEVER they gave me. Taking muscles from some other part of my body and trying to "recreate" new rectal muscles I thought that was my only option. Please understand, this website did not exist. BUTT my surgeon wanted me to see a WOCN nurse. That nurse wanted my husband to attend this meeting too. We both went and that is when I/we learned what a 'colostomy" & pouch was all about. I do believe that nurse and my surgeon were on the same page regarding what was best for me. My DH and I walked out of that meeting with DH saying "the best news you have options beyond this cancer". He said" I will support you in what ever decision you decide", butt I had already decided I wanted the bag. And called my surgeon the next day with my decision. So prior to my surgery, I knew my outcome and took it from there. I have only cried twice because i have a colostomy bag, butt have thanked GOD a million time for having the bag and having a normal life.

Again, if there is anything I can do me know.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby MissMolly » Sun Sep 17, 2017 11:46 pm

Lee:
The adhesive coupling system is a 2-piece ostomy system, just as your current snap-and-click TupperWare coupling system is a two-piece systems.

The phrase two-piece ostomy system implies that the wafer and pouch/bag are separate and distinct items. It is anologous to a 2-piece bathing suit where you have an upper bra and lower bikini pantie.

The phrase one-piece system implies that the wafer and pouch/bag are a single and combined unit.

An adhesive coupling system is a newer and more updated way to wear a two piece ostomy system. The wafer and pouch are each separate pieces. The wafer and pouch bond by an adhesive backing on each that is similar to the backing found on a Band-Aid strip. The pouch can be removed from the wafer and reattached multiple times. Ex. Remove the pouch to drain and clean; Pull back on the backing, slightly, to "burp" the pouch and release trapped air/has.

The advantages of an adhesive coupling system are many. The ostomy system is low profile, no longer employing a bulky and rigid Tuperware ring; the wafer is soft and pliable and moves with the body; you can change to a different sized pouch or to a stainable pouch whenever you please.

You would change the adhesive coupling wafer on the same schedule as you do with your current Tupperware style - once every 3-5 days, approximately 2 times a week. Although I know that there are people who take pride in extending the wear time of a wafer to 7-9 days. It is an unspoken contest to see who has the longest wearing wafer.

Coloplast makes a quality adhesive coupling system in its SenSura line. Colopast, in my opinion, is the highest in quality of the ostomy manufacturers and the more innovative. You can go to the Coloplast website and order a sample of the SenSura 2-piece adhesive coupling system.

Once you have used an adhesive coupling system, you will never return to the Tupperware coupling wafer/pouch combinations. The adhesive coupling system brings you closer to the desired perception of wearing no ostomy system at all. It is a feeling of freedom.
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.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Tue Sep 19, 2017 1:28 pm

MissMolly wrote:Lee:

Coloplast makes a quality adhesive coupling system in its SenSura line. Colopast, in my opinion, is the highest in quality of the ostomy manufacturers and the more innovative. You can go to the Coloplast website and order a sample of the SenSura 2-piece adhesive coupling system.

Once you have used an adhesive coupling system, you will never return to the Tupperware coupling wafer/pouch combinations. The adhesive coupling system brings you closer to the desired perception of wearing no ostomy system at all. It is a feeling of freedom.
Karen


Thank you for that info, I just might check it out. My biggest concern/fear. I started with Coloplast following my surgery. About 2 years later, I developed an allergic reaction to the wafer. Had to switch to Hollister, have been using them ever since. Butt that was over a decade ago. I'm sure a lot of advancement since then.

Thank you,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

User avatar
ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby ocstacy » Tue Sep 19, 2017 2:03 pm

We will know more after 09/25 which now I am very nervous about since I have to drive my father with me. He told me that she is in pain still and non stop going to the bathroom back and forth at night, during the day, etc.

I get it. I can't feel any more sorry for my mom. I love her, but she is stubborn, and doesn't understand what is happening. She think's disgusting, embarrassing, and shameful. I honestly just miss going to lunch with her talking about life, or her enjoying her grand daughter. I really want to take my mom to Disneyland, but I know with her condition, she will just say no. She is missing out a lot in life, even religious events. She always mentions to me "You don't know what it feels like to be me".. I can only support her in which I have been and it's exhausting. Have a good day! :D
Caregiver/daughter to dear mother age 78, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low-grade adenocarcinoma- 6 cm
Neoadjuvant start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 hospitalized abscess/hernia - home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Took her last chemo med 05/10/18! Ileo reversal 07/24/18
1st BM after reversal 07/25/18 Anal Fissure 8/15/18
Me:1st Colonoscopy age 38. 08/17 Benign polp.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Tue Sep 19, 2017 3:09 pm

Your doing a great job, your mom is from a different era. I remember soon after my surgery, a man wrote into Dear Abby regarding his cancer and colostomy, he was 20 years older than I. One of his last comments was he would rather die than live with his colostomy. Dear Abby suggested he should be grateful to be alive and counseling might be a good idea to help him accept his new life. There was a time, people did not talk about breast cancer or colon cancer. I remember when Betty Ford (wife of President Gerald Ford) announce she was battling breast cancer. It was almost a scandal, yet because of her bravery, others famous people came forward, now it is acceptable to talk about it.

Hopefully your mom will come around, until then I get it. My mom was stubborn too. I learned from her, you can take the horse to water, butt you can't make them drink it.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Aqx99 » Mon Sep 25, 2017 6:49 pm

Ocstacy,

I tried to reply to your pm and it is just sitting in my outbox. I think your inbox may be full. You'll need to delete some messages to allow new messages in.
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


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