Ileostomy woes

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Aqx99
Posts: 239
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy woes

Postby Aqx99 » Thu Nov 09, 2017 1:46 pm

heiders33 wrote:I changed my bag today and noticed that the major irritation was gone. There was still redness around the stoma, but no broken skin. I did notice a tiny "welt" on the top right side above the stoma that didn't have any sensitivity, so it almost seemed like it was part of the stoma, not an irritation. Has anyone else experienced this? It was weird but for some reason didn't worry me.

I didn't eat past 6:00 last night, and it was SO much easier to change the bag this time! There was only minimal bleeding, which means that clearly my constant cleaning the last time was causing the bleeding. I tried the method of molding the ring around the stoma first and then placing on the wafer. I did use a little paste to fill in divets, but made sure none of it got under the ring. We will see how this goes.

Also, it's clear that the convex appliance work much better for my skin. I tried a Coloplast bag once but the sticker didn't adhere to my skin well at all. Hollister has actually done a much better job with the sticker adhering to my skin. I am going to look into different types of barrier rings just to try them out.


Trial and error is the best way to find what works best for you. The nice thing about the barrier rings is that you can cut them and mold them to fit your needs. I also use Brava elastic barrier strips to help secure my pouch. My ostomy nurse has me put them under the adhesive around the wafer. I was having issues with the adhesive causing an allergic reaction, making the adhesive come off my skin due to the weeping redness. The Brava strips have eliminated that problem.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Ileostomy woes

Postby MissMolly » Thu Nov 09, 2017 9:17 pm

Heiders:
It sounds as though you are finding your “mojo” with your ostomy pouching and methodology in changing and placing in the skin. Whoo Hoo !

It really is a matter of individualizing a methodology that worked for you, the topography of your abdomen, and your skin.

Each ostomy manufacturer has their own proprietary “recipe” for the composite of the hydrocolloid maxtrix that is the wafer. Each manufacturer has subtle differences in the materials that form the wafer. The main manufacturers are: Hollister, ConVaTech, Coloplast, and CyMed.

Each person has individual skin characteristics - oily, dry, smooth, rough, perspiration, as well as sloughing of skin cells.
There are different manufacturers to meet the varied needs of varied people. It is always wise to call product manufacturers and ask for samples. You may find a product more congruent to your body and physiology than what you were provided at the hospital.

The UOAA web site and forum has contact information for each of the manufacturers. Feel free to post questions or concerns on the General ostomy section (not the temporary ostomy and reversal section, as that section has low member participation).

http://www.uoaa.org

Aqx99:
Good suggestion in bringing awareness to the Brava Elastic Strips. The Brava Elastic Barrier strips are a secure way to tack and hold down the edges of a wafer. Good idea.

But mainly . . .

You rock ! Of the many members on this forum who are faced with a temporary loop ileostomy, you are among the most proficient to learn and adapt and adjust to having an odd portion of intestine residing on one’s abdomen.

You are to be commended. A loop ileostomy is the most challenging of the ostomies to pouch and is considered to be high in maintenance. This is due to the location of the stoma higher up the length of small intestine than an end ileostomy - making the fecal output highly liquid in consistency and high in irritating digestive enzymes. Fecal output is almost 24-7, which in itself is daunting at times.

And look at you now. A few weeks ago, you were an ostomy newbie. Investigating and experimenting with an ostomy routine, trial and error. Now you are in command of your ostomy routine AND giving assistance and advice to newcomers. Awesome ! High-Five and cowabunga.

Congratulations to each one and everyone in gaining in familiarity and confidence with their temporary ostomy.
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

Aqx99
Posts: 239
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy woes

Postby Aqx99 » Fri Nov 10, 2017 7:30 am

MissMolly wrote:Aqx99:
Good suggestion in bringing awareness to the Brava Elastic Strips. The Brava Elastic Barrier strips are a secure way to tack and hold down the edges of a wafer. Good idea.

But mainly . . .

You rock ! Of the many members on this forum who are faced with a temporary loop ileostomy, you are among the most proficient to learn and adapt and adjust to having an odd portion of intestine residing on one’s abdomen.

You are to be commended. A loop ileostomy is the most challenging of the ostomies to pouch and is considered to be high in maintenance. This is due to the location of the stoma higher up the length of small intestine than an end ileostomy - making the fecal output highly liquid in consistency and high in irritating digestive enzymes. Fecal output is almost 24-7, which in itself is daunting at times.

And look at you now. A few weeks ago, you were an ostomy newbie. Investigating and experimenting with an ostomy routine, trial and error. Now you are in command of your ostomy routine AND giving assistance and advice to newcomers. Awesome ! High-Five and cowabunga.

Congratulations to each one and everyone in gaining in familiarity and confidence with their temporary ostomy.
Karen


Thank you. I have to credit my scientific education for helping move past the creepy factor of the loop ileostomy. I admit, I used to cry every time I changed my pouch for about the first month or so. But eventually the logical part of my brain took over from the emotional part. I'm a biologist by training, so I learned about peristalsis in school. Now I have the opportunity to watch it in real life! What was creepy is now fascinating to me. I am also the type to learn as much as possible about a new subject that interests me. Before I even started treatment I was reading and learning everything possible about my cancer and the various treatments I would be going through, including the ileostomy. Having a great ostomy nurse helped a ton, too.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

User avatar
chemo sabe
Posts: 438
Joined: Fri Mar 09, 2012 9:01 pm

Re: Ileostomy woes

Postby chemo sabe » Mon Nov 13, 2017 9:47 pm

I think Miss Molly gave you great information. I had my ileostomy for nearly 8 months. There were times I nearly cried because of the issues and the fact that I felt I could not even take care of myself. So the only thing I would add - I used to lie down when putting the new bag on. It really helped to get a good seal. We are opposite genders, but I used to wear the long "wife beater undershirts". I could wrap the bag into the undershirt and tuck the rest of the shirt in and it would support that bag nicely. Wishing the best for you - Gary
64 year old male
Diagnosed Stage 3 Rectal Cancer - T3N1M0 - Oct 2011
28 radiation treatments with xeloda
Colon resection with ileostomy Feb 2012
8 Rounds of Xelox completed Sept 2012
Ileostomy reversal surgery Oct 2012
Incisional Hernia Repair Nov 2013

NHMike
Posts: 534
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy woes

Postby NHMike » Tue Nov 14, 2017 12:28 am

Aqx99 wrote:
MissMolly wrote:Aqx99:
Good suggestion in bringing awareness to the Brava Elastic Strips. The Brava Elastic Barrier strips are a secure way to tack and hold down the edges of a wafer. Good idea.

But mainly . . .

You rock ! Of the many members on this forum who are faced with a temporary loop ileostomy, you are among the most proficient to learn and adapt and adjust to having an odd portion of intestine residing on one’s abdomen.

You are to be commended. A loop ileostomy is the most challenging of the ostomies to pouch and is considered to be high in maintenance. This is due to the location of the stoma higher up the length of small intestine than an end ileostomy - making the fecal output highly liquid in consistency and high in irritating digestive enzymes. Fecal output is almost 24-7, which in itself is daunting at times.

And look at you now. A few weeks ago, you were an ostomy newbie. Investigating and experimenting with an ostomy routine, trial and error. Now you are in command of your ostomy routine AND giving assistance and advice to newcomers. Awesome ! High-Five and cowabunga.

Congratulations to each one and everyone in gaining in familiarity and confidence with their temporary ostomy.
Karen


Thank you. I have to credit my scientific education for helping move past the creepy factor of the loop ileostomy. I admit, I used to cry every time I changed my pouch for about the first month or so. But eventually the logical part of my brain took over from the emotional part. I'm a biologist by training, so I learned about peristalsis in school. Now I have the opportunity to watch it in real life! What was creepy is now fascinating to me. I am also the type to learn as much as possible about a new subject that interests me. Before I even started treatment I was reading and learning everything possible about my cancer and the various treatments I would be going through, including the ileostomy. Having a great ostomy nurse helped a ton, too.


I've had a few ileostomy problems myself the last few days. The latest one is the VNA ordered me colostomy bags. I ordered the right bags (I had asked the VNA nurse to just order me what I already had) from the company myself and will have to bring the wrong stuff to the UPS to return these).

I had a bag leak on me while I was sleeping. Fortunately I woke up before there was a mess and headed to the bathtub to clean up and change the bag. Not a fun time. It had me thinking of how to deal with emergencies when I don't have my supplies.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Aqx99
Posts: 239
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy woes

Postby Aqx99 » Tue Nov 14, 2017 2:30 pm

NHMike wrote:
Aqx99 wrote:
MissMolly wrote:Aqx99:
Good suggestion in bringing awareness to the Brava Elastic Strips. The Brava Elastic Barrier strips are a secure way to tack and hold down the edges of a wafer. Good idea.

But mainly . . .

You rock ! Of the many members on this forum who are faced with a temporary loop ileostomy, you are among the most proficient to learn and adapt and adjust to having an odd portion of intestine residing on one’s abdomen.

You are to be commended. A loop ileostomy is the most challenging of the ostomies to pouch and is considered to be high in maintenance. This is due to the location of the stoma higher up the length of small intestine than an end ileostomy - making the fecal output highly liquid in consistency and high in irritating digestive enzymes. Fecal output is almost 24-7, which in itself is daunting at times.

And look at you now. A few weeks ago, you were an ostomy newbie. Investigating and experimenting with an ostomy routine, trial and error. Now you are in command of your ostomy routine AND giving assistance and advice to newcomers. Awesome ! High-Five and cowabunga.

Congratulations to each one and everyone in gaining in familiarity and confidence with their temporary ostomy.
Karen


Thank you. I have to credit my scientific education for helping move past the creepy factor of the loop ileostomy. I admit, I used to cry every time I changed my pouch for about the first month or so. But eventually the logical part of my brain took over from the emotional part. I'm a biologist by training, so I learned about peristalsis in school. Now I have the opportunity to watch it in real life! What was creepy is now fascinating to me. I am also the type to learn as much as possible about a new subject that interests me. Before I even started treatment I was reading and learning everything possible about my cancer and the various treatments I would be going through, including the ileostomy. Having a great ostomy nurse helped a ton, too.


I've had a few ileostomy problems myself the last few days. The latest one is the VNA ordered me colostomy bags. I ordered the right bags (I had asked the VNA nurse to just order me what I already had) from the company myself and will have to bring the wrong stuff to the UPS to return these).

I had a bag leak on me while I was sleeping. Fortunately I woke up before there was a mess and headed to the bathtub to clean up and change the bag. Not a fun time. It had me thinking of how to deal with emergencies when I don't have my supplies.


How many pouches does your insurance allow you per month? Mine allows me 20, yet I only use 10 on average. I order the max every time so I have plenty of extras. After my reversal, I plan to donate my surplus supplies to my local cancer charity. I carry a bag with enough supplies for several changes everywhere I go.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

User avatar
susie0915
Posts: 426
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Ileostomy woes

Postby susie0915 » Tue Nov 14, 2017 3:21 pm

After I had my reversal early, I was left with so many supplies. Since I had only had the ileo for a few weeks, I was a getting samples in the mail, and was about to try a new appliance due to my bleeding issues. I was able to donate everything. It felt good to know that these supplies were not going to go unused. I also ordered a couple covers and underpants in case I would need them in the future, and donated those as well. It is not easy to adjust to an ileo. I cried with my sister when she visited me in the hospital, but then I started emptying my bag there and began to feel comfortable doing it. I never experienced a leak but did empty every couple hours. It could be high maintenance. My only issue was my stoma bleeding.That issue never got resolved, but it was interesting to watch it work. I think if I would've kept my ileo as long as originally planned which would've been probably 8-10 months, it would've become second nature. I also did have a very good Ostomy nurse. Others don't realize all we go through with treatment. Most think after surgery everything works the same, have no clue we have a bag attached to our abdomen, or have a clue how many side effects chemotherapy has. It's pretty impressive how everyone here handles all they have to go through, with a positive attitude and a sense of humor. And it's not always easy.
58 yr old mother of 3 Dx @ 55
5/15 DX T3N0MO/ 2A
6/15 5 wks of chemo/rad
7/15 sigmoidoscopy/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. 3 1/2 weeks in hospital,early ileo rev since
surgery to repair blockage. c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod onc thinks scar tissue
monitored for autoimmune disorder/interstitial lung disease
7/17 no change lung nodule
10/17 Clear CT

heiders33
Posts: 19
Joined: Sat Nov 04, 2017 11:08 am

Re: Ileostomy woes

Postby heiders33 » Tue Nov 14, 2017 4:18 pm

susie0915 wrote:After I had my reversal early, I was left with so many supplies. Since I had only had the ileo for a few weeks, I was a getting samples in the mail, and was about to try a new appliance due to my bleeding issues. I was able to donate everything. It felt good to know that these supplies were not going to go unused. I also ordered a couple covers and underpants in case I would need them in the future, and donated those as well. It is not easy to adjust to an ileo. I cried with my sister when she visited me in the hospital, but then I started emptying my bag there and began to feel comfortable doing it. I never experienced a leak but did empty every couple hours. It could be high maintenance. My only issue was my stoma bleeding.That issue never got resolved, but it was interesting to watch it work. I think if I would've kept my ileo as long as originally planned which would've been probably 8-10 months, it would've become second nature. I also did have a very good Ostomy nurse. Others don't realize all we go through with treatment. Most think after surgery everything works the same, have no clue we have a bag attached to our abdomen, or have a clue how many side effects chemotherapy has. It's pretty impressive how everyone here handles all they have to go through, with a positive attitude and a sense of humor. And it's not always easy.


I agree, nobody except my closest family and friends has any idea that I have a bag attached to my abdomen that's catching my poop! It is amazing the way we can adapt to a new normal. So many things about my body have changed in the last six months, and will continue to change. Fighting cancer is a marathon, but it also feels like everything is happening so fast. I'm in awe of the human power to adapt, though I acknowledge the physical, emotional, and mental toll. We truly are resilient creatures.
35 year-old female
May 2017: colonoscopy found cancerous mass in rectum
CT scan showed no spread to distant organs
Endoscopic ultrasound staged at T3aN2M0
June-July 2017: 28 days of chemo/radiation
September 2017: LAR surgery with loop ileostomy
October 2017: started six rounds of mop-up XELOX

NHMike
Posts: 534
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy woes

Postby NHMike » Wed Nov 15, 2017 10:57 am

Aqx99 wrote:
NHMike wrote:
Aqx99 wrote:
Thank you. I have to credit my scientific education for helping move past the creepy factor of the loop ileostomy. I admit, I used to cry every time I changed my pouch for about the first month or so. But eventually the logical part of my brain took over from the emotional part. I'm a biologist by training, so I learned about peristalsis in school. Now I have the opportunity to watch it in real life! What was creepy is now fascinating to me. I am also the type to learn as much as possible about a new subject that interests me. Before I even started treatment I was reading and learning everything possible about my cancer and the various treatments I would be going through, including the ileostomy. Having a great ostomy nurse helped a ton, too.


I've had a few ileostomy problems myself the last few days. The latest one is the VNA ordered me colostomy bags. I ordered the right bags (I had asked the VNA nurse to just order me what I already had) from the company myself and will have to bring the wrong stuff to the UPS to return these).

I had a bag leak on me while I was sleeping. Fortunately I woke up before there was a mess and headed to the bathtub to clean up and change the bag. Not a fun time. It had me thinking of how to deal with emergencies when I don't have my supplies.


How many pouches does your insurance allow you per month? Mine allows me 20, yet I only use 10 on average. I order the max every time so I have plenty of extras. After my reversal, I plan to donate my surplus supplies to my local cancer charity. I carry a bag with enough supplies for several changes everywhere I go.


I believe that I have the same deal with my insurance company. The supplies should arrive today or tomorrow unless there are insurance issues. If they don't arrive this week, then I'll buy some from a local medical supply place without insurance. I want to move my old supplies to the office and leave them there as it's the place where I spend a decent amount of time. With more supplies, I can leave some stuff in the car as well though I don't know if that's wise as we've already had some freezing weather. I do plan to have an emergency bag in the car with a towel, spare change of clothes, bandages, tape that could help with an emergency change. I will ask the Ostomy nurse at Brigham and Women's to show me other options for bags if she has them available. I think that I have a catalog but it's usually more helpful to see products and get opinions on them.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

Aqx99
Posts: 239
Joined: Fri Mar 31, 2017 7:28 am
Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy woes

Postby Aqx99 » Wed Nov 15, 2017 11:50 am

NHMike wrote:I believe that I have the same deal with my insurance company. The supplies should arrive today or tomorrow unless there are insurance issues. If they don't arrive this week, then I'll buy some from a local medical supply place without insurance. I want to move my old supplies to the office and leave them there as it's the place where I spend a decent amount of time. With more supplies, I can leave some stuff in the car as well though I don't know if that's wise as we've already had some freezing weather. I do plan to have an emergency bag in the car with a towel, spare change of clothes, bandages, tape that could help with an emergency change. I will ask the Ostomy nurse at Brigham and Women's to show me other options for bags if she has them available. I think that I have a catalog but it's usually more helpful to see products and get opinions on them.


I don't recommend leaving supplies in the car. Cold and hot temperatures can affect the quality of the adhesive. The last thing you want is to need an emergency change, only to find that the fresh pouch is just as bad as the one you took off. I got a nifty little bag from ConvaTec when I sent for some samples. It has plenty of room for all the supplies I need and even has a hook that allows you to hang it up when you are changing your pouch. It came in handy when I went to my surgeon a month ago with a bleeding issue. They took my pouch off to find where the bleeding was coming from and to put some surgical mesh on it to help it clot off. Afterwards they let me have the exam room to put a fresh pouch on. I hung my supply bag from the handle of the cabinet above the sink so everything was right where I needed it during my change. I use a zip top bag to hold a pouch, barrier ring and Brava strips. That way I can just pull one out and know I have everything right there. Then I can use the bag to dispose of the old pouch and seal off the smell so it can go in the trash. All the other essentials, wipes, paste, etc. fit nicely in the pockets of the supply bag.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
Diagnosed at age 39
2/21/17 Diagnosis
2/21/17 CEA 0.9 ng/mL
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR with temp loop ileostomy, ovaries and fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 Started CapeOx, 6 Cycles
7/24/17 Diagnosed with precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
1/18ish Reversal

NHMike
Posts: 534
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy woes

Postby NHMike » Wed Nov 15, 2017 2:50 pm

Aqx99 wrote:
NHMike wrote:I believe that I have the same deal with my insurance company. The supplies should arrive today or tomorrow unless there are insurance issues. If they don't arrive this week, then I'll buy some from a local medical supply place without insurance. I want to move my old supplies to the office and leave them there as it's the place where I spend a decent amount of time. With more supplies, I can leave some stuff in the car as well though I don't know if that's wise as we've already had some freezing weather. I do plan to have an emergency bag in the car with a towel, spare change of clothes, bandages, tape that could help with an emergency change. I will ask the Ostomy nurse at Brigham and Women's to show me other options for bags if she has them available. I think that I have a catalog but it's usually more helpful to see products and get opinions on them.


I don't recommend leaving supplies in the car. Cold and hot temperatures can affect the quality of the adhesive. The last thing you want is to need an emergency change, only to find that the fresh pouch is just as bad as the one you took off. I got a nifty little bag from ConvaTec when I sent for some samples. It has plenty of room for all the supplies I need and even has a hook that allows you to hang it up when you are changing your pouch. It came in handy when I went to my surgeon a month ago with a bleeding issue. They took my pouch off to find where the bleeding was coming from and to put some surgical mesh on it to help it clot off. Afterwards they let me have the exam room to put a fresh pouch on. I hung my supply bag from the handle of the cabinet above the sink so everything was right where I needed it during my change. I use a zip top bag to hold a pouch, barrier ring and Brava strips. That way I can just pull one out and know I have everything right there. Then I can use the bag to dispose of the old pouch and seal off the smell so it can go in the trash. All the other essentials, wipes, paste, etc. fit nicely in the pockets of the supply bag.


Sounds like good advice. Ditto for hot summer temperatures.

I was able to carry my laptop backpack and a duffle with food containers and water bottles. My regular gym bag sometimes weighs 15 pounds if I'm carrying a lot of water with me. Ostomy supplies shouldn't add much weight to my bag.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy

MissMolly
Posts: 423
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Ileostomy woesh

Postby MissMolly » Thu Nov 16, 2017 2:16 am

Mike:
Anne (Aqx99) has given you astute advice and suggestions for what to include in a portable ostomy kit - for those occasions when you are away from home and experience an unexpected wafer leak or digestive upset.

I carry a small velcrowed lunch tote (6” x 4” x 2”) to pack my emergency supply kit. I toss it in my over-the-shoulder bag for the day. The emergency kit gives me confidence that I can tend to an unforeseen mess while I am out and about.

I have at the ready all of the supplies that I would need for one complete change, with the caveat to “keep it simple.” Select the supplies for your portable ostomy kit that you and your skin need for a BASIC change out and replacement. The intent of the portable kit is to provide a quick and fuss-free change that will bide you over until you can return to the comforts of your own home where you can take the time to thoroughly clean the pariatomal skin a complete and focus on a thorough ostomy wafer and pouch change.

Here’s the inventory of items in my portable ostomy kit:
1. Ostomy wafer with a PRE-CUT starter hole. Pre-cut the water to the size opening that fits your stoma circumference. If you choose not to pre-cut the wafer, be sure to include a pair of small, blunt-end scissors.
2. Ekin adaptic ring or similar barrier ring.
3. Travel-size package of Kleenex tissues. I use these to wipe accumulated fecal matter off of the skin when the old water is removed. You can also enclose 3-4 Bounty select-a-size paper towels.
4. (2) quart-sized Ziplock bags. Used to dispose of the soiled/old wafer and pouch. There are specialty ostomy disposal bags that you can purchase through your ostomy supplier or Amazon. These bags are nice when you have to change in a public bathroom and need to dispose of soiled ostomy water and pouch discretely and without worry of embarrassment.
5. M-9 air freshener spray or similar oldactory cover-up.

Notice that I do not include skin prep products nor any “fancy” accessory ostomy. The focus of the portable ostomy kit is to provide a temporary hold over until you return home and can tend to a full and exacting wager and pouch change.

I agree with Anne that leaving a portable Ostomy kit in the car is NOT wise. The hydrocolloid matrix that is the ostomy wafer is sensitive to temperature - both heat and cold. You run the risk of reaching for a replacement wafer that is no longer usable.

The bonding and air-tight seal of an ostomy wafer to the skin occurs owing to a body temperature activated reaction when the wafer is in intimate contact with skin and the body’s heat.

The number of pouches allowed per month is set by Medicare guidelines. Private medical insurance plans follow Medicare guidelines, regardless of provider or plan (Blue Cross, Aetna, Cigna, et al). Medicare guidelines also establishes monthly allowabkes for ostomy supplies (barrier rings, adhesive remover, stoma powder, ostomy belt, Cavilon Liquid Skin preparation, et. al.

Monthly allowable limits:
A. 20 drainable pouches per month (used by individuals with an ileostomy) OR 30 closed-ended pouches (used by individuals with a colostomy)
B. 15 ostomy waters per month (two-piece system)
C. 1 box (20) adaptic barrier rings per month (ex. Brava adaptic ring or Ekin cohesive ring)
D. Paristomal skin wipes/cleaner, 2 packages of 30 count wipes each.

The purpose of the monthly allowances is to discourage individuals from amassing an excessive supply and then selling the supplies on e-Bay or Craig’s list for personal monetary profit.

If you have an active stoma or have skin irritation issues or have an uneven abdominal topography and find that you are using ore supplies than the monthly allowance provides, you need not skimp and suffer.

A “Supply Override” provides for additional Ostomy supplies bewondnrhe any number of ostomy a supplies To get additional supplies, you need only have your physician write a short letter documenting the need for the additional supplies and the quantity needed. This is then submitted to the ostomy supply provider and forwarded to the insurance provider when the invoice is submitted.

Home health is responsible for sourcing and providing any and all ostomy supplies while being followed by home health. Your home health RN will show you how to order routine/monthly ostomy supplies before discharging you from home health. If you have private insurance (through an employer provided medical insurance plan or through the ACA marketplace), most insurance providers have contracts with 1-2 ostomy supply companies. You will want to make sure that you order through your medical insurance’s preferred and contracted provider (ex. Byram Healthcare, Edgepark, Sterling Medical).

Continue best wishes,
Karen
Devoted daughter to my father, diagnosed with stage 2 colon cancer Nov-2014.
Dear friend to Bella Piazza, former CC member.
I have a permanent ileostomy and offer advice on living with an ostomy.
I have been on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression and recurrent infection x 4 years. I transitioned to Hospice Sept-2016, but it was not yet my time. I am back on Palliative Care and live a simple life due to frail health.

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ocstacy
Posts: 193
Joined: Mon Jun 19, 2017 11:29 pm
Facebook Username: stacy

Re: Ileostomy woes

Postby ocstacy » Thu Nov 16, 2017 3:41 am

was diagnosed back in May 2017 with rectal cancer T3a possible N2 M0. I was not completely shocked because I had been having suspicious symptoms for a while, and I had read that study that came out about the rise in colorectal cancer among people in their 20's and 30's. I got through the initial chemo/radiation very well, which reduced the tumor to almost nothing, leaving lots of scar tissue. My LAR surgery in September lasted almost six hours but was successful


Wow, you have mirrored my mom's DX and journey. She was dx May 2017 but didn't start radiation and chemo until 07/1 and had surgery 10/17. She had a complication after surgery but doing better now. My mom also uses the same products as you. Do you have a wound cleaner spray? I noticed the nurse had that and sprayed her wound with it and that seem to help. They also recommended taking the whole thing off and showering cleaning all of it. My mom was scared but now doing much better. My mom will start chemo soon (Xeloda) after she feels better from the infection.

Best of luck mamas.
Caregiver/daughter to dear mother age 77, dx 5/09/17 because of me!! :wink:
Rectal CA Stage 3 low grade adenocarcinoma- 6 cm
Neoadjuv. Chemo/Rad. start 7/10/17 ended 08/16/17
3D Lap. surgery @ Keck USC, Dr. Sang Lee 10/17/17 temp ileostomy
11/1 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
Chemo Xeloda post-surgery following reversal 2018
Love my mom, BUTT she is a horrible patient :roll:
Nam-myoho-renge-kyo :!:

NHMike
Posts: 534
Joined: Fri Jul 21, 2017 3:43 am

Re: Ileostomy woesh

Postby NHMike » Thu Nov 16, 2017 6:49 am

MissMolly wrote:Mike:
Anne (Aqx99) has given you astute advice and suggestions for what to include in a portable ostomy kit - for those occasions when you are away from home and experience an unexpected wafer leak or digestive upset.

I carry a small velcrowed lunch tote (6” x 4” x 2”) to pack my emergency supply kit. I toss it in my over-the-shoulder bag for the day. The emergency kit gives me confidence that I can tend to an unforeseen mess while I am out and about.

I have at the ready all of the supplies that I would need for one complete change, with the caveat to “keep it simple.” Select the supplies for your portable ostomy kit that you and your skin need for a BASIC change out and replacement. The intent of the portable kit is to provide a quick and fuss-free change that will bide you over until you can return to the comforts of your own home where you can take the time to thoroughly clean the pariatomal skin a complete and focus on a thorough ostomy wafer and pouch change.

Here’s the inventory of items in my portable ostomy kit:
1. Ostomy wafer with a PRE-CUT starter hole. Pre-cut the water to the size opening that fits your stoma circumference. If you choose not to pre-cut the wafer, be sure to include a pair of small, blunt-end scissors.
2. Ekin adaptic ring or similar barrier ring.
3. Travel-size package of Kleenex tissues. I use these to wipe accumulated fecal matter off of the skin when the old water is removed. You can also enclose 3-4 Bounty select-a-size paper towels.
4. (2) quart-sized Ziplock bags. Used to dispose of the soiled/old wafer and pouch. There are specialty ostomy disposal bags that you can purchase through your ostomy supplier or Amazon. These bags are nice when you have to change in a public bathroom and need to dispose of soiled ostomy water and pouch discretely and without worry of embarrassment.
5. M-9 air freshener spray or similar oldactory cover-up.

Notice that I do not include skin prep products nor any “fancy” accessory ostomy. The focus of the portable ostomy kit is to provide a temporary hold over until you return home and can tend to a full and exacting wager and pouch change.

I agree with Anne that leaving a portable Ostomy kit in the car is NOT wise. The hydrocolloid matrix that is the ostomy wafer is sensitive to temperature - both heat and cold. You run the risk of reaching for a replacement wafer that is no longer usable.

The bonding and air-tight seal of an ostomy wafer to the skin occurs owing to a body temperature activated reaction when the wafer is in intimate contact with skin and the body’s heat.

The number of pouches allowed per month is set by Medicare guidelines. Private medical insurance plans follow Medicare guidelines, regardless of provider or plan (Blue Cross, Aetna, Cigna, et al). Medicare guidelines also establishes monthly allowabkes for ostomy supplies (barrier rings, adhesive remover, stoma powder, ostomy belt, Cavilon Liquid Skin preparation, et. al.

Monthly allowable limits:
A. 20 drainable pouches per month (used by individuals with an ileostomy) OR 30 closed-ended pouches (used by individuals with a colostomy)
B. 15 ostomy waters per month (two-piece system)
C. 1 box (20) adaptic barrier rings per month (ex. Brava adaptic ring or Ekin cohesive ring)
D. Paristomal skin wipes/cleaner, 2 packages of 30 count wipes each.

The purpose of the monthly allowances is to discourage individuals from amassing an excessive supply and then selling the supplies on e-Bay or Craig’s list for personal monetary profit.

If you have an active stoma or have skin irritation issues or have an uneven abdominal topography and find that you are using ore supplies than the monthly allowance provides, you need not skimp and suffer.

A “Supply Override” provides for additional Ostomy supplies bewondnrhe any number of ostomy a supplies To get additional supplies, you need only have your physician write a short letter documenting the need for the additional supplies and the quantity needed. This is then submitted to the ostomy supply provider and forwarded to the insurance provider when the invoice is submitted.

Home health is responsible for sourcing and providing any and all ostomy supplies while being followed by home health. Your home health RN will show you how to order routine/monthly ostomy supplies before discharging you from home health. If you have private insurance (through an employer provided medical insurance plan or through the ACA marketplace), most insurance providers have contracts with 1-2 ostomy supply companies. You will want to make sure that you order through your medical insurance’s preferred and contracted provider (ex. Byram Healthcare, Edgepark, Sterling Medical).

Continue best wishes,
Karen


I added your stuff to a new Ileostomy iCloud Note (how I keep track of what's gone on, what I need to do and data and directions). I'm pretty busy this week taking care of paperwork, appointments and errands that I didn't do while I was out of commission. But I need to work on the emergency stuff. It did occur to me that an emergency kit should have a one-piece instead of a two-piece to get rid of that extra step. I suspect that I'd be better off with a one-piece solution but I'll talk to the Ostomy nurse about that in two weeks.
06/23/17: ER rectal bleeding; Colonoscopy+Biopsy
07/13/17: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm.
Xeloda 3,400 mg/day + radiation 07/31 - 09/08.
CEA 2.7; halfway through treatment: 1.9; after treatment: 1.8.
MSS, KRAS G12D
10/06/17: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV.
Surgery: 10/30/17 LAR, Temp Ileostomy


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