1st MRI tomorrow after Neoadjuvant therapy

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
ocstacy
Posts: 264
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

1st MRI tomorrow after Neoadjuvant therapy

Postby ocstacy » Thu Sep 14, 2017 3:47 am

Tomorrow I will drive my mom to Los Angeles, CA to USC Keck of Medicine to get her 1st MRI after chemo/radiation. Please pray that her tumor has shrunk. My mom has been in a lot of rectal pain after her chemo/radiation. She says that her rectum hurts more and it feels like there is tissue there. Every time I look at her, she has this painful look on her face. She has become exhausted with this whole journey. It breaks my heart because she doesn't have the energy to go anywhere and she has to be near a toilet all the time.

I offer to do her nails, offer to dye her hair, take her to lunch and or go shopping with me but she always says no. I even buy her products for her rash on her legs. It's almost like she is giving up slowly. If there is anything you can recommend for me to do, please share. My husband is very supportive but my brother is an ass, he won't even talk to me because I found out that he put my parents home in his name. :(
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.

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby susie0915 » Thu Sep 14, 2017 7:56 am

I hope the scan is positive and this news will help you mom feel better about her future. Continue to stay positive and loving her. You are doing a great job. This journey is as hard maybe harder on family than the patient. Keep offering to take her to out and maybe one day she will say yes. Also, take care of yourself too. I'm praying for good news tomorrow.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

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

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Thu Sep 14, 2017 10:39 am

Good luck with your mom's upcoming MRI.

For me, radiation was the worst. Surgery and chemo were easier. It took me about a month following radiation for me to feel normal again. And like your mom, if I ate anything, I was tied to the toilet for hours. I feel for your mom.

I would come to understand radiation destroyed 2/3rd of my rectal muscles. It is why I have a permanent colostomy bag today. I'm telling you this in case this might happen to your mom. For me, getting the bag gave me my life back. I can eat what I want and not worry how certain foods will effect me. I can be out all day and not worry where the nearest bathroom is. If you have any questions, let 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!

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 » Thu Sep 14, 2017 11:01 pm

I would come to understand radiation destroyed 2/3rd of my rectal muscles. It is why I have a permanent colostomy bag today. I'm telling you this in case this might happen to your mom. For me, getting the bag gave me my life back. I can eat what I want and not worry how certain foods will effect me. I can be out all day and not worry where the nearest bathroom is. If you have any questions, let me know.


Hi Lee! Thank you for replying. My mom still does not accept that she may have an ostomy bag even though her surgeon mentioned that she may lose her muscle control. This morning, I helped my mom out as she needed help. Her pain level was a 10. I helped her w/ the enema, then the KY jelly insert that you have to insert prior to MRI. She ended up having an MRI with contrast. She said the shot hurt. By the looks of what is going down there, it looks like a hot mess, but not super bad. Just looks like the tissue is coming out, hemorroids, and swollen rectum. Poor thing. I even mentioned to her that her life will maybe be so much better with a bag so she could actually enjoy life again. She literally doesn't got anywhere because of the toilet issue. She says right when she eats, she feels like she has to go. So it makes sense if the radiation zapped her poor rectal muscles. (sphincter) She said the pain was worst after the radiaton ended.

For the surgery, how long do you think she will be in the hospital for? How was your recovery? Is it hard to manage and clean the ostomy bag or is it pretty easy? What happened to your rectum? Do they seal it off, or is the tissue still there or does the surgeon remove that too? That is the part where I am so confused. He said she would have the temp bag, then reversal in 5 months or so. Wonder why they wait so long for reversal. Prayers for positive results. :?
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.

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 » Fri Sep 15, 2017 1:55 pm

Each case is unique based on where the tumor is located, size, etc. Here is my experience. My surgeon removed the upper part of my rectum and part of my sigmoid colon. He then attached the remaining colon to the stump of rectum. The reason they do a temporary ileostomy is to allow this new connection to heal. The tissue is very fragile after radiation, so having fecal matter passing through could tear it open. I had my surgery done robotically. I went in on a Wednesday and was home on Saturday. They gave me dilaudid for the pain in the hospital, but I only needed it the first 2 days or so. I had hydrocodone to take at home, but didn't touch it after my second day home. Walking is key. Make sure your mom is up and walking several times a day, starting the day of her surgery.

Get with an ostomy nurse before the surgery. They are awesome. Mine showed me a variety of appliances, explained how they worked and even let me practice emptying one. They will also mark your mom for the proper placement of the stoma. Mine marked me for both the ileostomy and a colostomy, just in case. At first the ostomy pouch can be intimidating, especially the first time you change it yourself, but eventually you get to be comfortable with it. It just takes practice. I saw my ostomy nurse several times to let her tweak my set up until she was happy with the seal I was getting on my belly. After that she gave me the go ahead to start ordering supplies from the mail order medical supply company.
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

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

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Fri Sep 15, 2017 4:24 pm

ocstacy wrote:Hi Lee! Thank you for replying. My mom still does not accept that she may have an ostomy bag even though her surgeon mentioned that she may lose her muscle control. This morning, I helped my mom out as she needed help. Her pain level was a 10. I helped her w/ the enema, then the KY jelly insert that you have to insert prior to MRI. She ended up having an MRI with contrast. She said the shot hurt. By the looks of what is going down there, it looks like a hot mess, but not super bad. Just looks like the tissue is coming out, hemorroids, and swollen rectum. Poor thing. I even mentioned to her that her life will maybe be so much better with a bag so she could actually enjoy life again. She literally doesn't got anywhere because of the toilet issue. She says right when she eats, she feels like she has to go. So it makes sense if the radiation zapped her poor rectal muscles. (sphincter) She said the pain was worst after the radiaton ended.

For the surgery, how long do you think she will be in the hospital for? How was your recovery? Is it hard to manage and clean the ostomy bag or is it pretty easy? What happened to your rectum? Do they seal it off, or is the tissue still there or does the surgeon remove that too? That is the part where I am so confused. He said she would have the temp bag, then reversal in 5 months or so. Wonder why they wait so long for reversal. Prayers for positive results. :?


For me the bag was easy to deal with, probably because it was my decision. Believe me, it truly gave me my life back. The only way I could deal with life (remember I had 2 kids, 9 & 11) was to not eat ANYTHING until I knew I was home for the day. Many times that was not until 3 or 4 in the afternoon. Many times, I only had a 2 sec warning. One day, I woke from sleep, ran to the bathroom, did not make it. Sat on toilet for as long as I thought was necessary. Went into the shower, had another accident there (no warning). Knew I was going to go again. Ran out of shower into other bathroom, again did not make it. No way to lead a life. When I knew I had everything out of me, I spent the next hour cleaning up all my messes around the house. No way to live your life. Please understand, this whole process lasted several hours. My daughter who was on a swim team at time, had to have a friend pick her up at last minute. I was in NO CONDITION to leave the house. Now, I have control of of emptying my bag. My bowels can go anytime it want. I keep supplies with me, not a change of clothes. I can eat what I want and not worry how food effect my bowel. Believe me when all is said and done, her bowels will be different.

Doctors would love to pick my brain when they realized I had no issues talking about my colostomy bag. I was less than 4 months out from surgery, a doctors was picking my brain and followed with, "you clearly have adjusted well to your bag". I told him that was not the battle ground, my cancer was. Another new doctor with a 30 min of conversation, and talking about my bag, I followed with just so you know, I've gone twice now since you walked into the room. She dropped with jaw with comment. Believe me it gave me my life back.

For her right now, radiation is still doing it's job. I'm SHOCK, they actually wanted something to go into her rectum. Mine was so swollen following radiation, NO ONE was allow to touch it, per me. I can only imagine what your poor mother had to endure. Something tell me, if the person who order the enema had to endure what she did, they too have said no enema.

If her results are anything like mine, surgeon is talking about taking rectal muscles away and replacing them with muscles from some other part of your body, Goal was to TRAIN new muscles to get BM to 3 daily, butt the truth was I could end up with 20 or more BM on a daily basis. Gee I was already there.

Do you know if your Mom's surgery is going to be lapro or will she be cut open like me. Recovery from Lapro is far easier. The BIGGEST piece of advice, following surgery is walk, walk walk. It truly help in the healing process. Hard in the beginning, due to surgery pain but helps with the pain with in a few days following surgery. I had my surgery on Monday morn, they were going to release me sometime Saturday, butt I wanted out Friday. DB was flying home on Saturday. Because I spent so much time outside of hospital on Friday, they released me Friday night. For me, my rectum is completely gone, the expression is I have a Barbie butt now (sewn up back there).

Yes there is a learning curve in the beginning, butt an Ostomy nurse is worth there weight in gold. Have your mom talk to an Ostomy nurse, especially prior to surgery and you go with her. Find out if there is an organization near by, if yes, attend a meeting. Here is the United Ostomy Association website.

https://www.uoaa.org/forum/index.php?si ... 0ef660f3f0

For me in short order, it goes along side with brushing your teeth. Again, I can answer any and all question, All the best to you and your Mom,

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 » Fri Sep 15, 2017 9:52 pm

Ocstacy:
While I understand you and your mother's hesitancy and reluctance to contemplate a permanent ostomy, I would like to propose the possibility that a permanent colostomy may ultimately be the option to providing your mother with a higher quality of life.

If surgerical pathology shows the anal sphincter have been compromised by infiltrating cancer cells, then a colostomy would be the more compassionate option. Loss of anal sphincter control almost universally means unrestricted fecal incontinence necessitating the wearing of adult Depends. There is nothing pleasant about wearing soiled disposable undergarments.

If surgery involves a lower anterior resection, there is always risk for developing LARS (lower anterior resection syndrome). Delicate autonomic neural motor and sensory pathways are damaged, with disabling symptoms that are not easy to resolve (clustering episodes, bowel movements 10 or more times a day, incomplete emptying, anismus (painful muscle spasms of the pelvic floor).

Your mother's age (77 years) would be a disadvantage in assessing her digestive system's ability to reclaim a degree of normalacy. As with cognitI've learning by the mind, the ability of the smooth muscle of the lower digestive tract to relearn the sequenced coordination that is elimination is easier for those who are young than for those who are older in chronological age. LARS could be immensely distressing to your mother, especially given that she is likely mentally fatigued by the many months of chemo-radiation preceding surgery.

Ostomies span all ages - from infants with hereditary-based slow colonic motility (Hirshberger's disease) to adolescents and young adults with Chron's and ulcerative colitis to middle aged individuals with a ruptured diverticulosis. Stomas and ostomies are not restricted to "old people." On the UOAA forum, there are members in age from 14 years of age to 85 years of age - and every age in between.

Ostomy products (wafers that adhere to the skin and pouches that collect fecal material) are modern and technologically quite advanced. I feel fortunate to have the quality of ostomy products available that we do. Ostomy pouches are completely odor free and water tight. Ostomy pouches are silent - they do not rustle or make a crinkling noise. Many wafer/pouch options are low profile and discrete, unnoticeable to others. Colostomy pouches have the option of being closed-ended and disposable. Simply remove a pouch after a passage of stool, place in a plastic bag, and toss into the garbage for disposable. Easy pezzy and without mess or fuss.

I have had a permanent ileostomy for close to 6 years. For all of the health challenges that I have faced, the ostomy and its care is at the bottom of my list of concerns and inconveniences. My ostomy is well behaved and low maintenance to care for. I rarely have a "blow out" (ostomy wafer failure with leakage of liquid stool). Finding the right ostomy pouching system is key, and takes some trial and error in the early days in soliciting varied ostomy products to see what works best for individual skin characteristics and abdominal topography. Care for my ostomy is another self-care, as are brushing and flossing my teeth. My ostomy does not restrict me in any way. My stoma is not gross or unsightly to look at. It is but a small 3/4 " in diameter bud of intestine that sits atop my abdomen.

If the choice is between fecal incontinence or a permanent colostomy, I would argue in the affirmative for an ostomy. There is a good quality of life to be lived with an ostomy/stoma.

I hope that comments my Lee and myself can help you in looking at the possibility of a stoma/ostomy in the affirmative. Knowledge is power.
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 » Fri Sep 15, 2017 10:43 pm

MissMolly wrote:Ocstacy:

If surgerical pathology shows the anal sphincter have been compromised by infiltrating cancer cells, then a colostomy would be the more compassionate option. Loss of anal sphincter control almost universally means unrestricted fecal incontinence necessitating the wearing of adult Depends. There is nothing pleasant about wearing soiled disposable undergarments.

If surgery involves a lower anterior resection, there is always risk for developing LARS (lower anterior resection syndrome). Delicate autonomic neural motor and sensory pathways are damaged, with disabling symptoms that are not easy to resolve (clustering episodes, bowel movements 10 or more times a day, incomplete emptying, anismus (painful muscle spasms of the pelvic floor).


Ostomies span all ages - from infants with hereditary-based slow colonic motility (Hirshberger's disease) to adolescents and young adults with Chron's and ulcerative colitis to middle aged individuals with a ruptured diverticulosis. Stomas and ostomies are not restricted to "old people." On the UOAA forum, there are members in age from 14 years of age to 85 years of age - and every age in between.


If the choice is between fecal incontinence or a permanent colostomy, I would argue in the affirmative for an ostomy. There is a good quality of life to be lived with an ostomy/stoma.

. . . Knowledge is power.
Karen


Like Karen said, Knowledge is power. Karen layed it out very well. If your mother's anal sphincter muscles are compromised in any way, really the colostomy is the way to go for "a higher quality of life".

Believe me, you have been given some wonderful advice here on this thread, I've had my colostomy for over 13 years now. I'm going to as special reunion in about 2 weeks, what my bowels have to eat/deal with is nothing. As long as I have my wafers and bags, I am in control of my plane ride, my car ride, and the special presentation I will be giving at a VIP dinner.

Not bad for a cancer survivor,

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!

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

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby Lee » Fri Sep 15, 2017 10:56 pm

Not bad for a cancer survivor who was given a 30% to 50% of being alive in 5 years. I totally look forward to my 15th years a few years from now.

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 » Sat Sep 16, 2017 1:13 am

Like Karen said, Knowledge is power. Karen layed it out very well. If your mother's anal sphincter muscles are compromised in any way, really the colostomy is the way to go for "a higher quality of life".


Dear Lee and Karen,
Thank you so so much for the detailed and respectful reply. I thank you for the support and explaining your experience with the perm. ostomy. I have some questions. Is Ostomy, Colostomy and Oma bag all the same terminology? I always think I am saying it wrong. I have heard of permanent "pouch", ostomy, colostomy (what the GI mentioned with her results) last May. When he told me that my mom would have this for the rest of her life most likely, my mind went blank, and of course after finding out that she had Cancer was the worst day of my life.

Anyhow, I feel that maybe we rushed seeing her USC surgeon too soon. Her radiation ended 08/16 and it's been almost a month so I figured why not see him. I didn't realize that she would be in so much pain. I didn't want to hurt her, so I did the best that I could to prep her for her MRI. As mentioned her pain level was a 10, she was shaking. I gave her Hydrocodone. I also had to inject that jelly also in her rectum prior to MRI. That wasn't half as bad as the enema. Her rash seems to have gotten worst after radiation was over, but slowly starting to look a little better with time. I have bought every single product to manager her Cancer care. I know she appreciates it, but she is a very stubborn patient. I do recall a time in 2014 when I had the worst hemmy's of my entire life, and my pain level was a 8-9. I pray for you all. My mom describes it as 'Ice pick" "shock" "Chizzle" "pulses like a heart beat". That is what my hemmy's felt like at it's worst. Throbbing beating pain.

I do feel that my mom's quality of life will be so much better, as in more "Livable" for her age. If she would just accept the consequences, she feels disgusted thinking about it. Right now, she feels dirty, embarrassed, upset, depressed, confused, emotional, and scared. She has never had surgery her entire life. She can NEVER go anywhere, not even the grocery store or Target, because literally after she eats, she has to be near a restroom like you mentioned. She can't go to her grand daughter's school events because of her rectum, sitting in a car is very hard for her. She pretty much spends her life on the toilet like 3 times an hour. When she is missing and we can't find her, well I know where she is, she is in the bathroom. I feel so bad, wish I could help her more but I can't. She is getting the LAPAROSCOPIC surgery (3D) Dr. said that he may be able to save the "sphincter" but most likely it will lose strength a little.

Lastly, I do have a question that may be too personal and I apologize if it's TMI but it has me thinking. Since this is a support group and we talk about Butt's and pooping, etc. I thought I would ask this silly question. Does the ostomy bag have a noticeable odor that you others can tell? My friend mentioned to me that he had a classmate in his class that had one and sometimes he could smell a light odor, nothing too bad, sorry if it is too personal. Thank you so much for all of your support. I am pretty much on my own as far as caring for my mom. My dad is 83 and he never goes to her appt. Okay, off to bed.. nighty night and hugs
Last edited by ocstacy on Sun Sep 17, 2017 12:23 am, edited 3 times in total.
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.

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

Re: 1st MRI tomorrow after Neoadjuvant therapy

Postby MissMolly » Sat Sep 16, 2017 4:04 am

Ostacy:
Please read through my prior post one more time.

An ostomy pouch (ostomy pouch is the preferred term as the word pouch is less offensive than the word bag) is 100% odor free. The bonding of the wafer to the skin is a 100% air tight seal. There is no release of any odor or smell of any kind. You can swim in a swimming pool or scuba dive in the ocean and the seal will remain intact.

The wafer is composed of a hydrocolloid matrix with pectin and elastic polymers. The adhesion of a wafer is through a chemical bond that is activated by the body's natural heat/temperature. There is no glue or tacky adhesive.

You need to understand that most people with an ostomy do not carry around a large bag of poop through the day.

With an ileostomy (where fecal output is liquid in consistency), the pouch is drained and emptied about 8-10 times a day. Most people with an ileostomy empty their pouch each time they use the restroom to urinate.

With a colostomy (where the fecal output is semi-soft in consistency, like toothpaste), fecal output is only 2-3 times a day - often the same frequency of bowel movement prior to surgery. The large intestine moves in peristaltic waves that ripple through the lower digestive tract 3-4 times a day. People with a colostomy will generally empty their pouch after each bowel movement. A person with a colostomy also has the option of using a closed-ended pouch. With a closed-ended pouch, you simply take off the pouch, fold the wafer to seal on itself, place in a doozy waste bag or similar, and toss into the regular garbage.

It is understandable that your mother feels the many emotions that she does now - her anus and rectum are inflamed, swollen and angry.

But I can guarantee you that I do not feel "dirty" nor "repulsive" nor "ashamed" in having an ostomy. The stoma is a small rosebud of intestine that sits perched on my abdomen about 2 inches from my navel. It is 3/4 " in diameter. I wear a 5" Colopast Mio mini-pouch. It is low-profile, flexible and pliable, moving as my body moves. I rarely notice it presence during a day.

A clinical study actually looked at the hygiene of individuals with an ostomy and those without an ostomy. Individuals without an ostomy are constantly sloughing off dead cells through their anus. Individuals with an ostomy and a sewn up backside have no cellular debris and are "cleaner." You have to remember that an intact digestive system has its own mortal "yuck factor."

As far as terminology, ostomy bag and ostomy pouch are synomous. Pouch has a more positive connotation and is the preferred term by those of us (like me) with a permanent ostomy.

An ileostomy refers to a stoma created by a portion of the small intestine. A loop ileostomy is a temporary stoma where a portion of small intestine is brought to the surface of the abdomen and sliced longitudinally, creating an active stoma and a mucus stoma. An end ileostomy is a permanent ostomy where the distal end of the ileum is brought to the surface, turned back like a turtleneck sweater, and stitched into place.

A colostomy refers to a stoma partioned by a section of large intestine. A colostomy can be placed at any level/segment of the large intestine. Ex. A sigmoid colostomy is a stoma created at the level of the sigmoid colon. Ex. A transverse colostomy is a stoma placed at the segment/level of the transverse colon.

Ostomy pouches come available with and without carbon filters. Carbon filter pouches allow for the release of digestive gases as they are formed. There is absolutely no smell associated.

Some people do react differently to the different polymers and plastics used in creating the different ostomy pouches available. Each person has their own unique skin chemistry and skin composition and endocrine hormones. Each manufacturer has its own unique proprietary formulation/recipe that defines their brand of wafers and pouches. Some people will react to certain pouches and wafers where a slight odor associated with the pouches is concerned. Where this is the case, the person is best to try another brand of ostomy product. This may be the underpinning of the situation alluded to by your friend.

The main ostomy product manufacturers are: Hollister; Coloplast; ConvaTech; CyMed.

A hospital usually contracts with only one ostomy supplier to provide their hospital system with post-operative ostomy supplies. A patient at any one hospital will be outfitted with the ostomy brand that the hospital contracts with. Hospitals contract with a single manufacturer to achieve economies of scale and favorable pricing.

That said, the brand of ostomy product that a person is provided Post-operatively may or may not be the optimal product line for that particular person. Skin composition, stoma site placement, and abdominal topography are unique for each person. Different brands have different characteristics. It is wise for a person with a new stoma to call each of the major manufacturers and solicit free samples of wafers, pouches, adaptic seals/barrier rings, and skin preparation sprays/pads. Ex. I was provided with Hollister while in the hospital. When I came home, I researched different options and came to find the Colopast Mio and CyMed Microskin product lines to be ideal for me. The quest for the optimal pouching system is unique to each person but an important part of living one's best life with an ostomy.

I can honestly say that having an ileostomy is not a big deal for me, personally.Care for my ostomy takes about 10 minutes a day to change the wafer and pouch (I use a one-piece system and swap it out daily). Draining and emptying the pouch takes about 3 minutes from start to finish. I empty my pouch about 8 times a day. I empty the pouch when it is about 1/3 full. I do so as I do not want to carry a pouch of poop on my abdomen. I keep my pouch relatively empty.

Again, rare is the situation where someone is walking around with a full pouch 24/7. That people have a full pouch of poop sitting on the front of their abdomen is a gross misrepresentation of what it is to live with a well managed ostomy.

I am a petite person, 5'2" and 85 pounds, and very feminine. I am at complete ease with my ostomy and feel confident about myself in being with other people. No one would know that I have an ostomy unless I were to tell them.

Honestly, from my perspective, your mother has a better chance of feeling hygenically clean with a possible colostomy than she feels now with an inflamed and angry anus and rectum. Your mother's emotions are likely heightened now due to the stress of treatment and fear of the unknown. Your mother's unknown also includes the concept of an ostomy.

There are any number of sterotyes and mis-truths about ostomies. One reason I participate in the forum is to help dispel negative stereotypes and perceptions of an ostomy and stoma. I do so out of loving memory to my friend, Belle.

You may want to read Belle's personal blog about her decision to request a permanent colostomy. Her blog is a 3 part series archieved on this forum in the Blog Section. Her series is titled "The Colostomy Columdrum" (or similar title). Belle takes openly about her personal decision to opt for a colostomy after a disruptive life and bowel embarrassment after an ileostomy takedown for rectal cancer. Her narrative is raw and personal and a valuable contribution to this forum that lives on in her name.

Feel free to go to the United Ostomy Association of America web site and discussion support forum. You will meet a wide swath of people living full and engaging lives with an ostomy. http://www.uoaa.org

Do not be afraid or fearful of the prospect of a possible colostomy for your mother. Her quality of life may well be better with an ostomy than with damaged anal sphincter muscles and incomplete sphincter control.
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.

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 12:13 am

There are any number of sterotyes and mis-truths about ostomies. One reason I participate in the forum is to help dispel negative stereotypes and perceptions of an ostomy and stoma. I do so out of loving memory to my friend, Belle.

You may want to read Belle's personal blog about her decision to request a permanent colostomy. Her blog is a 3 part series archieved on this forum in the Blog Section. Her series is titled "The Colostomy Columdrum" (or similar title). Belle takes openly about her personal decision to opt for a colostomy after a disruptive life and bowel embarrassment after an ileostomy takedown for rectal cancer. Her narrative is raw and personal and a valuable contribution to this forum that lives on in her name.

Feel free to go to the United Ostomy Association of America web site and discussion support forum. You will meet a wide swath of people living full and engaging lives with an ostomy. http://www.uoaa.org

Do not be afraid or fearful of the prospect of a possible colostomy for your mother. Her quality of life may well be better with an ostomy than with damaged anal sphincter muscles and incomplete sphincter control.


Karen,

Thank you so much for sharing this with me. I wrote my last post at 1 a.m. so my apologies for wording things and hurting people's feelings. Those were not my intentions at all, so please accept my apologies. I need to start putting myself in other people's shoes and show more empathy about the unknown. The reason why I mentioned the "B" word, is because of my mother's G.I. He mentioned that word to me after her colonoscopy appointment and he made me feel so angry and sad. I guess he could have been more professional about it and used the correct word to help me understand what it was. Like I said, I felt very surprised and angry when he said that to me. He was also Asian, Vietnamese to be exact. I know in the Asian culture, having an Asian background myself, they come across to be very blunt, rude, and unprofessional. He also mentioned to me 'I am so sorry, it doesn't look good, your mom has cancer, she will most likely have a "B" for the rest of her life". (then he handed me the surgeon's business card) I was shocked that he would tell me all of this info after the procedure. I do remember the nurse saying the dr. wanted to talk to me after the procedure but didn't think anything of it. I bursted out in tears immediately and ran to the bathroom and phoned my dad, best friend, and husband. I knew in my heart after reading the reviews of the surgeon that he referred us to was NOT going to happen. The reviews were horrible and that is why chose a surgeon at USC.

I will read the blog of your friend Belle and look at the UOAA.ORG site. As mentioned, I am a newbie to this and I am on this site to get some support as I have no support from my dad or brother. My mom has a hard time understanding anything medical related. I just want my mom to enjoy life again as much as she can without running to the bathroom all the time.

I agree with you and thank you again for your support and knowledge. It is much appreciated.

Stacy <3
Last edited by ocstacy on Sun Sep 17, 2017 10:40 pm, edited 1 time in total.
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.

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 1:27 am

There are any number of sterotyes and mis-truths about ostomies. One reason I participate in the forum is to help dispel negative stereotypes and perceptions of an ostomy and stoma. I do so out of loving memory to my friend, Belle.



I read her blogs, wow.. truly amazing. Made me rethink it all. Thank you.
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 3:05 pm

ocstacy wrote:Thank you so much for sharing this with me. I wrote my last post at 1 a.m. so my apologies for wording things and hurting people's feelings. Those were not my intentions at all, so please accept my apologies. I need to start putting myself in other people's shoes and show more empathy about the unknown.


You have not hurt anyone feeling, so please do not feel bad for words you may have written. This is a major learning curve. I am here to help people and like I stated earlier, doctors ( and even friends) love to pick my brain when they realized I'm okay talking about it. So ask any and all questions.

I wear a 2 piece system. A wafer that is sticks to my skin (Karen did a wonderful job explaining how it work, thanks to her, I learned something new), and a pouch (I do use the word "bag" a lot, especially around family and close friends). I think of it as "pouch" is the official word while "bag" is less formal. They stick together like a tupperware bowl and lid. I wear the disposal pouches and change as needed. When I have "output", I take the old pouch off and replace with a clean news pouch.

Depending how active I am, some days, it's just one pouch a day, generally 2 pouches a day, on a rare occasions 3 or 4 bag in a day. I keep drainable pouches for those occasions when I am sick with lots of output or preping for a scope or etc. My stools tend to start out mostly formed butt become more liquid towards the end of output. Between radiation, surgery, chemo, my bowel movements are forever changed. Which is another reason I feel I made the right decision in going with the colostomy.

Regarding smell. When I have a clean pouch on, there is no smell. When I do have out put, again there is no smell. Butt when I am home, and I am being active (output), I tend to wear my bag to the last minute (being Charlie cheap here) and sometimes then, yes I/it can start to smell it. That is because the charcoal filter has been compromised with my output. Butt I only do this at home, I expect my family to say something it is a problem. If I am out and about and I have output, I will change it. I'm wondering if that friend is not changing as often as s/he should. ---If you do everything correctly, there should be NO SMELL!---

The only place for odor is in the bathroom. Most people sit on a toilet and when they pass a BM, it drops into a bowl of water. That water prevents a lot of odor from spreading. With the pouch, taking it off the wafer, there is odor from the pouch and from the wafer. I put my used pouch in a zip lock bag and then put a new pouch on. Butt a lot of odor has spread. We have an air vent and I use a lot of air freshener at home, That is the ONLY time there should be odor, is in the bathroom, not on the person with the colostomy. I also keep purse size air freshener handy when I am out and about.

Yes, having a colostomy is a disability. Generally I do not use the "handicap" bathroom stall unless I am changing my bag. When I am changing my bag, I feel I have every right to use the handicap bathroom or stall. Mainly because I need the larger area to work with.

Like Karen, I willing to share my experience if it can help someone. 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.

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 3:29 pm

Lee:
There really is no reason for you to be as conservative as you are in your use of the closed-ended pouches.

Medicare guidelines (followed by almost all insurance providers) allow for 60 closed ended pouches a month. This sets a standard of expected use and avoids the potential of people seeking coverage for excessive pouches and then selling them for cash on e-bay.

But you certainly can have coverage for more than 60 closed-ended pouches in a month. Your physician needs only to write what is called a "prescription over-ride" - indicating the number of pouches that you need in a month with a substantiating rationale. The prescription over-ride is submitted to your ostomy supplier (Byram Medical, Edge park Healthcare, etc) who then updates your insurance provider and payor source.

For the prescription override: Stating that you have bowel irritability with semi-formed and liquid output that requires a higher frequency of changing/swapping out the pouch should be sufficient.

60 closed-ended pouches a month is the guiding standard but is open to an increase in pouch allocation based on individual need. You need need wear a pouch to the point that it is compromised and odiferous.
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.


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 102 guests