Stoma Reversal or Not

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Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Stoma Reversal or Not

Postby Mercy110 » Tue May 29, 2018 5:50 am

Thanks for all your ideas. I will definitely bring up questions regarding to LAR symptoms and adaptation tmr.
It is a very big decision to make and we tend to let mum decide by herself, but she is still 50-50. Sometimes she feels so tired searching for toilet for clearing the bag, but I guess this would only be worse right after the reversal.

I am also worried for her future since she is a stage 4 patient that we are not sure if there are any further treatments. We hope she could be as stable as she is right now, of coz. The uncertainty of future concerns us so much as well.

For me, the bag is fine. However, it all depends on mum coz she is the one who has to live with the bag, work with the bag and clean the bag. She is not completely accepting its existence but she can manage the stoma well.
She is also concerning whether her stoma (which is from small intestine) can be used forever as most permanent stoma is from colon.

Grateful for all your comments and I will update our thoughts tmr after meeting the surgeon. Thanks again!
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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

Re: Stoma Reversal or Not

Postby Lee » Tue May 29, 2018 9:51 am

Atoq wrote: . . . But I wondered if a permanent ileostomy means that the colon is removed or is is it possible to keep it disconnected?

All the best

Claudia


In my situation, rectal cancer, my rectum is totally gone (thus I have a Barbie butt). I made my decision prior to my surgery. As I told my surgeon, take all that you want, just be sure to get all the cancer. There are members on this forum who got a permanent colostomy later and thus still have a rectum. Guess radiation made it impossible to get the rectum removed.

Good luck with your decision.

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!

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Stoma Reversal or Not

Postby mhf1986 » Tue May 29, 2018 10:35 am

DH has a permanent stoma after the reconnect failed a week after the tumor removal. He has switched from emptying/cleaning pouches to 1-time use system called Mio Click. Yes, you still have to find a bathroom but you just remove the pouch, put it in a special ziploc disposal bag, and throw it out. Then place the new one on, rather like a tupperware lid snapping on. The "backplate" where the pouches are attached needs to be replaced about every 3-5 days. This new method is not what he was given in the hospital and has made a big difference in handling things.

Frankly, every doctor we've talked to has told us that more surgery of any kind is not an option.
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

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

Re: Stoma Reversal or Not

Postby MissMolly » Tue May 29, 2018 5:08 pm

Atoq wrote:I totally agree that living with a ileostomy would not be a problem at all for me, but it is a big decision . . I have reversal scheduled in a week. But I wondered if a permanent ileostomy means that the colon is removed or is is it possible to keep it disconnected?

All the best

Claudia


Claudia:
Your question is one that surfaces over time as new members come and go and is a good question to review anew.

Most/all members here with an ileostomy have what is called a “loop ileostomy.” A loop ileostomy is formed by bringing a segment of the middle section of small intestine (jejunum) up and onto the surface of the abdomen, making a lengthwise slit of approximately 4 inches along the length of small intestine, rolling back the edges at both ends of the slit, thereby forming two stomas in close approximation. The stoma that connects to the functioning upstream small intestine is called the “active” or “working” stoma. The stoma that connects to the disconnected and resting remainder of intestinal tract is called the “non-working” or “mucus” stoma.

An end ileostomy is formed by bringing up the terminal end of the small intestine (the ileum) onto the surface of the abdomen, rolling the intestinal tissue back upon itself like a turtleneck sweater. An end ileostomy has only one stoma, an active/working stoma. The residual downstream intestinal tract is either: 1. Surgically removed. Either as a total colectomy (retaining a rectal stump or rectal cuff + anal sphincters) or as a total proctocolectomy (removal of rectum and removal of anal sphincters with surgical closure of one’s backend, ie “Barbie butt”); 2. Downstream intestine is retained in situ.

A loop ileostomy is higher maintenance to care for and generally causes people more grief than an end ileostomy. Because the loop ileostomy is sited higher up along the length of small intestine, the fecal material had a higher water content - the fecal output is a thin liquid and of high volume output per unit time. A loop ileostomy, because of its dual stomas, is also more challenging to contain with an ostomy pouching system. The ostomy wafer plate needs to be larger to accommodate the two stomas and is more cumbersome. Asthetically, the loop ileostomy is larger and more noticeable than an end ileostomy, and can cause people more emotional angst.

A loop ileostomy is usually placed as a temporary measure, but it
can remain as a permanent ostomy when circumstances dictate (ex. a person is medically frail or compromised and not a strong candidate for additional surgery to undergo a reversal or create an end ileostomy). That said, a loop ileostomy is not a first choice when making a decision for a permanent - its’ high volume output leaves the person at risk for recurrent dehydration; the resting remainder of intestinal tract is prone to disuse colitis, an inflammatory condition.

There are all sorts of ostomies based on the site/location along the digestive tract - loop ilesostomy, end ileostomy, ascending colostomy, transverse colostomy, sigmoid colostomy. Any ostomy can be temporary. Any ostomy can be permanent. It is oft said among ostomy veterans: “Any ostomy is permanent until it is
successfully reversed.” Meaning: There is no guarantee that an ostomy can be 100% successfully reversed. Only time will tell how well function is restored following a reversal (rectal sensitivity and pelvic floor coordination and anal sphincter control are most problematic).

So, yes . . . A loop ileostomy can begin as a temporary option and be retained as a permanent option if need be. However, a loop ileostomy is more challenging to maintain than an end ileostomy or variable site colostomy and, therefore, is not an ideal permanent ostomy.

People have temporary and/or permanent ostomies for many different reasons. Ulcerative colitis and Chron’s disease are a common finding in young people finding severe symptom relief in an ostomy; automobile accidents that cause pelvic injuries; chronic constipation due to nerve damage and severe slowing of intestinal motility; pelvic floor prolapse; diverticular disease.
Karen
Last edited by MissMolly on Tue May 29, 2018 5:25 pm, edited 1 time in total.
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.

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

Re: Stoma Reversal or Not

Postby NHMike » Tue May 29, 2018 5:21 pm

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

User avatar
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Stoma Reversal or Not

Postby Atoq » Wed May 30, 2018 12:53 am

Thanks a lot for the explanation, I have a loop ileostomy and had a loop colostomy before, between radiation and surgery. Both were easy to care for, the output of the ileo is coming more continuosly but is not so liquid, probably because I eat too much fibers (eating a lot of salad in the fear that after reversal I won’t be able to eat it anymore). Somehow it seems a bit easier to just get a new stomy in case reversal is not successfull, instead that also removing the rectum and getting a Barbie butt.

Best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

Mercy110
Posts: 118
Joined: Wed Aug 16, 2017 12:13 am

Re: Stoma Reversal or Not

Postby Mercy110 » Wed May 30, 2018 2:49 am

Thank you for the detailed explanation that actually solved our concerns to a certain extent. We have just met with the surgeon. He leaves the decision of reversal to my mum. He told us my mum’s colon is doing well and clear through the scan, and it is ready for reversal.
However he also admits there would be LAR syndromes right after. It is my mum’s call now but she cannot make the decision. Btw, almost the whole rectum has been removed according to the surgeon, so I guess it means it is harder to get adjusted.
My Mum (age 56), NRAS-mutate Q61R (from HK)
2017-05: Surgery with stoma. T4N1M0. Stage3C. Xeloda Only. Increasing CEA. CT: Multiple lung nodules. Stage4.
2017-09: 85% FOLFOX + Avastin, stable CT
2018-03 to 05: Folfox Allergy, Folfiri (with Avastin since Oct)
2019: CEA:178, started Irinotecan+Zaltrip+TS-1, 25 times radio with xeloda
2020: CEA up, Stivarga for 6 months
2021: CEA up, 7L O2 and 24-hour morphine, on pc care
At peace 2021.4.14

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

Re: Stoma Reversal or Not

Postby MissMolly » Wed May 30, 2018 1:01 pm

Atoq wrote: I have a loop ileostomy and had a loop colostomy before, between radiation and surgery. Both were easy to care for, the output of the ileo is coming more continuosly but is not so liquid, probably because I eat too much fibers (eating a lot of salad in the fear that after reversal I won’t be able to eat it anymore). Somehow it seems a bit easier to just get a new stomy in case reversal is not successfull, instead that also removing the rectum and getting a Barbie butt.

Best

Claudia


Claudia:
Be somewhat cautious with regards to a robust intake of a large salad and leafy greens with an ileosotmy. Chew, chew, chew . . . And chew some more. Make certain that you have a clear liquid beverage (iced tea, lemonade, coffee, juice) to accompany as you dine on a full salad.

Here is the deal . . . It is not that a salad, per say, is contraindicated with an ileostomy. One can eat a small dinner salad with an ileostomy without overt concern if one makes certain to chew, chew, chew before swallowing to facilitate breaking the leafy greens and salad toppings (carrots, cucumbers, radish, et al) into smaller pieces. Chewing is like a pre-digestion process.

An ileostomy, by its vary nature of the diameter of the small intestine, has a working stoma apperature that is 3/4 inch to 1 inch in diameter. Salads can be a problem for ileostomies if a blouse of food material is large and unable to pass though the opening. There is limited ability of the stoma opening to s-t-r-e-t-c-h. A large partially digested bolus of Chinese vegetables or okra or coconut or pinto beans (as expamples of possible occlusion culprits) can become “stuck” in the segment of intestine immediately preceding the stoma opening. In forming a stoma, the intestine is often given an angled turn in the 3-4 inches preceding the stoma. It is this area and the aperatire opening that are most common for a partial obstruction due to a large bolus of partially digested food.

The diameter of the small intestine is much smaller than that of the large intestine. Partial obstructions of the small intestine are more frequent that of the large intestine due to food blouses. The stoma opening of ileostomy is smaller than the stoma opening of a colostomy.

I would agree with you that a loop ileostomy as a permanent choice is less than ideal. If a person’s post reversal experience is unbearable due to LAR symptoms (fecal incontinence; unpredictability; frequent bowel movements, 20+ a day; rectal muscle spasms and pelvic pain; etc) then an elective sigmoid colostomy with complete surgical removal of the rectum (Barbie butt) or resection of the majority of the rectum with a residual small recital cuff would be a more life-conforming choice. Use of disposable ostomy pouches or daily irrigation make a colostomy less cumbersome and can offer a quality of life somewhat close to an intact digestive system with normal plumbing.

I continue to stop by this forum to let people know that life with a stoma need not be a life of embarrassment or hesitancy or loss of confidence. My ileostomy and I live in harmony. Adapting and adjusting to a stoma is possible.
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
Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Stoma Reversal or Not

Postby Atoq » Wed May 30, 2018 2:34 pm

MissMolly wrote:Claudia:
Be somewhat cautious with regards to a robust intake of a large salad and leafy greens with an ileosotmy. Chew, chew, chew . . . And chew some more. Make certain that you have a clear liquid beverage (iced tea, lemonade, coffee, juice) to accompany as you dine on a full salad.

Here is the deal . . . It is not that a salad, per say, is contraindicated with an ileostomy. One can eat a small dinner salad with an ileostomy without overt concern if one makes certain to chew, chew, chew before swallowing to facilitate breaking the leafy greens and salad toppings (carrots, cucumbers, radish, et al) into smaller pieces. Chewing is like a pre-digestion process.



Thanks a lot Karen, I also experienced that mango fibers get easily stuck. Now I will be even more cautious with salad.The reversal is planned for next Monday and I feel a bit sad about losing my ileo. It was like having another pet to look after it and after 4 months I got really affectionate to it :D

All the best

Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED


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