Reversal or keep ileostomy?

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miles66
Posts: 4
Joined: Wed Apr 05, 2017 5:12 pm

Reversal or keep ileostomy?

Postby miles66 » Wed Apr 05, 2017 5:54 pm

Greetings all. I am scheduled for my takedown in a month, but am contemplating the possibility of keeping my ileostomy. A bit of background: I was diagnosed with rectal cancer last year, and I've had most of my rectum removed with about half of my sigmoid colon. Please see my signature for other info. I've spoke with several people that immediately ask "why would you even think of keeping that thing??". The fact is, I have had no issues with it in the 9 months I've had it. Change the pouch once a week, empty it several times a day and I'm good. I can eat normally (and not normally), travel, sleep well, nothing has really changed except I don't tuck my shirts in anymore. Most people don't even realize I have it. I've heard many stories about the problems that occur after the takedown, and up to a year or two after. I know my bowels will never be the same again, and there will be a new "normal" for me. One problem is I travel for my work quite a lot, and drive and fly long hours. I also have dealt with a mild IBS during my life, and still have episodes with it many times throughout the year. It certainly would be helpful to hear some good outcomes of post reversal life, along with some input of people that have kept the ileostomy. Thank you for any information you are willing to share.
50 year old father of 2
Rectal cancer, stage T2N1M0
Diagnosed 3/31/16
Started Xeloda and radiation 4/14/16
LAR 7/28/16 with temp ileostomy
Xeloda and Oxaliplatin 9/6/16 through 2/14/17

MissMolly
Posts: 397
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Reversal or keep ileostomy?

Postby MissMolly » Wed Apr 05, 2017 9:31 pm

Miles66:
If you are feeling undecided and ambivalent about your upcoming and scheduled reversal, you should be aware that there is no fixed or mandatory time frame that you have to adhere to in having your intestinal plumbing reconnected - or not connected.

Your temporary ileostomy can remain as is/status quo for months and months and months without substantial negative effect should you decide at a later point in time to have it reversed. There is no defined time frame that must be adhere to for a successful reversal, although I have heard that 5-7 years is about as far out as one can keep a diverting ostomy and have hope for a workable and successful reversal.

1. Keeping your temporary, loop ileostomy for now and making it permanent at a later date

There are individuals on the UOAA form (United Ostomy Association of America) that have kept their temporary loop ileostomies. Most people who opt for a permanent ostomy choose to undergo an ostomy revision that involves altering the temporary loop ileostomy to an end ileostomy.

Why?

An end ileosotmy (made by bringing up the terminal end of the ileum onto the abdomen, creating a single stoma) is much easier to maintain and pouch successfully than a loop ileostomy (made by bringing up a length of the jejunum, splicing the segment along its length and opening it up, creating two stomas - a "working stoma" that represents the end/distal portion of the functioning digestive tract and a "mucus stoma" that represents the beginning/proximal portion of the diverted/resting digestive tract).

An end ileostomy is less intensive to care for than a loop ileostomy. An end ileostomy has a lower volume of fecal output per day; an end ileostomy has fecal output that is thicker/mushier in consistency; an end ileostomy has a lower percentage of corrosive digestive enzymes meaning that the parastomal skin is less irritated and less inflamed. An end ileostomy is generally preferred to a loop ileostomy. Most people will undergo stoma revision surgery to create an end ileostomy in deciding to keep an ostomy long-term.

2. Keeping your temporary, loop ileostomy for now and having a takedown + reversal at a later date

You need not be in any rush to decide on a reversal of your loop ileostomy. There is no defined end date by which a reversal must occur in order to meet with success.

There are individuals on the UOAA forum that have maintained their loop ileostomies for years and years and later decided to undergo a takedown - with successful end results. In one particular case on the UOAA forum, there was a gentleman who kept his loop ileostomy for 5 years before deciding to proceed with a takedown + reversal. Despite the 5 year delay, his reversal was highly successful with no post-reversal deficits. He expressed that he was "as good as new."

Aspects to consider if you decide on a takedown and reversal years from now:
• The muscles of the pelvic floor and anal sphincters that are critical in the role of defecation lose muscle tone and "muscle memory" when they are not in regular use. A late-term reversal can be problematic with pelvic floor dysfunction - the normally synchronized and highly choreographed interactions between the sphincters and pelvic floor muscles falls to the wayside, much like an orchestra no longer having a conductor. A sphincter may close when it needs to open. The levator ani muscle may relax when it needs to contract. The distal anatomy, "down there," becomes confused and defecating can be an agonizing endeavor.
• The muscle tone of the resting segment of intestine weakens when it is not in use for years on end. Slow motility of the distal segment of intestine may persist when the entire length of intestinal plumbing is reconnected.

Bottom Line: You are not held by any strict necessity to proceed with the reversal next month. You can delay your reversal by weeks, months, or even years - if you so choose - and have the reversal performed at a later date. You can opt to make your loop ileostomy permanent if your ileostomy is giving you benefit in and of itself and/or giving you benefit in managing preexisting intestinal woes (ex. irritable bowel syndrome).

Your body. Your choices.

- 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.

Lydia666
Posts: 650
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Reversal or keep ileostomy?

Postby Lydia666 » Wed Apr 05, 2017 11:24 pm

I have definitely enjoyed being back to normal. My issues are frequent bowel but nothing that changes my quality of life. I go a few times during the day but have full control, never once close to an accident. Traveling is no problem .

All the best to you!
Oct 2012- thyroid cancer
June 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/chemo 5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda /positive CHEK2 mutation
May 2016- clear CT
July 2016- ileo reversal
August 2016- DCIS breast cancer
Oct 13,2016 - lumpectomy
Dec 2016 - clean scope
Feb 24,2017- prophylactic double mastectomy
April 2017- clean scope
May 2017 -clean CT scan
Sept 2017 - clean lung scan
Mom to 2 & 5 yrs daughters

Ehut
Posts: 169
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Reversal or keep ileostomy?

Postby Ehut » Thu Apr 06, 2017 9:27 am

I read all the horror stories about ileo reversal before having mine reversed, but decided to go forward anyway. I am extremely grateful that I did, as I did have some ileo issues with prolapse and occasional leaking, and not being able to comfortably sleep on my side. Post reversal, it took several weeks/months, but I got back to a good "normal", that involves going usually twice per day with excellent control. In some ways my system is working better now than ever before.
Dx 12/11 rectal stage IV w/ 6 mets to liver
4 cycles FOLFOX 12/11 to 2/12
5 days radiation 2/12 (European protocol)
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
Currently NED!

AussieAssCancer
Posts: 213
Joined: Sat May 21, 2016 10:16 am

Re: Reversal or keep ileostomy?

Postby AussieAssCancer » Mon Apr 10, 2017 1:03 am

I am a tad over 7 weeks out from my reversal and it is the best thing I did. I had an ULAR with not much of my original rectum kept and I too had read horror stories of people who had had bad experiences with their reversals.

The first two days were miserable but each day/week got better and better. If you read my recent entry you'll see that, for all intents and purposes, things are pretty normal for me.

I have had no issues with incontinence and I am back to eating anything I want, when I want.

For me, the greatest benefit was psychological. It was a huge thing to be able to walk down the street and look down and not see a bag attached to me. Little things like being able to lie on my stomach turned out to be a huge deal. I went for my first swim at the beach the other in I can't even remember how long. I went once with my bag but was so self-conscious about it that I ended up hating going to the beach, even just to sit on the sand and watch my daughter make sandcastle's. Now I have that sense of self back, which is a huge thing given I was a competitive swimmer and the beach has always been a big part of my life.

I said to my surgeon after only 2 weeks when things were less than ideal that if that was as good as it was going to get, then I could live with that and more.

MissMolly has given you some invaluable advice to help you make your decision. As she said, it's your body and your choice. I wish you best of luck whichever route you choose.

Geoff
Dx Oct '15 w/ Stage 3c RC
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
April '16: Clear CT (NED)
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Dec '16: Clear CT (NED)
Feb '17: Ileostomy reversed
Aug '17: Clear CT (NED)

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

del
Posts: 45
Joined: Thu Mar 03, 2016 11:21 pm
Location: Sydney, Australia

Re: Reversal or keep ileostomy?

Postby del » Wed Apr 12, 2017 4:54 am

I had exactly the same thoughts before my reversal last November. You read so many horror stories about LAR syndrome, and I had my entire rectum removed so I was sure I would have major problems. I went back to work after two weeks and everything has been getting better month by month. I'd say 5 months later life is pretty normal for me. I eat whatever I want, go to the gym, swim at the beach, go hiking, camping, long road trips, flights, etc. I do visit the toilet maybe 2 or 3 times a day but have full control so it's no big deal. Also, you may want to ask your surgeon about the possibility of going back to a bag if the reversal really doesn't work for you - it might give you some peace of mind knowing there is a plan B if things really don't work out. Good luck!
Male, 33 @ dx, stage 1 RC (T1N0M0 0/29 LNs)
2016-02 - Cancerous polyp removed during colonscopy, 0.5 mm margin
2016-03 - ULAR & TME surgery, temp ileostomy
2016-04 - DVT, pulmonary embolism
2016-08 - Clean CT
2016-11 - Ileostomy reversal
2017-03 - Clean CT & colonoscopy
2017-09 - Clean CT

User avatar
CRguy
Posts: 9221
Joined: Sun Feb 10, 2008 6:00 pm

Re: Reversal or keep ileostomy?

Postby CRguy » Wed Apr 12, 2017 9:23 pm

Hi miles66,
good info for you in this topic so far, BUTT maybe the best starting point I could offer would be : strictly IME / JMO !

1. get the takedown done ( with some proactive preparation ) ... no rush on the time frame
2. work with it for a while ( with a program such as MDA references listed below ) ... give it at least a year or two... IMO
3. IF it is not working for your QOL .... consider making a stoma permanent.

Why do I say this ?
I have had more rectosigmoid resected than you had and I am post takedown since Feb 2008.
It takes TIME and a plan after the reconnect to get into a "new normal" ( hate that term BTW :twisted: )
Personally have not seriously considered becoming a "lifer" with the stoma BUTT many folks who have had issues, do so with very good results.

There have been many topics here about post-resection temporary ileostomy takedowns over the years.
In general the replies seem to be " try reversal first before considering making it permanent ."
Then IF there are severe issues which limit QOL ... consider going for a permanent stoma ( either ileostomy or colostomy depending upon your exact circumstances )
Some things to consider / investigate would involve the MD Anderson "bowel training" resources which many folks here have tried. Here are a couple of links for you
https://www.mdanderson.org/transcripts/ ... Bisanz.htm

https://www.mdanderson.org/patients-fam ... age|page:0


Final word to a friend = research this site ... it is a huge resource of folks who are/were where you are and where you are going....
AND http://www.ostomy.org/Home.html always comes into the conversation as the Go To resource for stomas.

Best wishes with whichever decision you make

Cheers and Harmony
CRguy on the Journey
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Rich.P
Posts: 3
Joined: Wed Mar 08, 2017 11:20 am

Re: Reversal or keep ileostomy?

Postby Rich.P » Tue Apr 18, 2017 9:03 am

Hi...I had my ileostomy reversal 15 months ago and still having LARS problems, my last incontinence issue was 3 weeks ago and thankfully I was home. I still can't eat until 3-4 pm or I am trapped in the house because once I eat there can be very little warning time before I have to go so if I was out somewhere not immediately close to a bathroom I would be in deep trouble. I have asked my surgeon about a permanent bag and he has told me to give it at least a couple years before considering that option which is what I'm going to do. While the bag gave me more freedom I found it very unappealing and in the way big time for any intimacy.
I'm currently trying a different diet, not drinking during meals only in between , more fiber, less grazing, probiotics and the exercises I've read on here.
Lots of interesting and relevant information on here, best of luck to all!!
Rich.P

MissMolly
Posts: 397
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Reversal or keep ileostomy?

Postby MissMolly » Tue Apr 18, 2017 3:55 pm

Rich.P wrote:I had my ileostomy reversal 15 months ago and still having LARS problems


Rich.P wrote:I have asked my surgeon about a permanent bag and he has told me to give it at least a couple years before considering that option


I honestly find it sad when surgeons hold a negative view of ostomies and discourage individuals from pursuing an ostomy when it would likely improve their quality of life.

Rich, be aware that a colostomy is much easier to care for than a loop ileostomy, as you have had previously. A colostomy is low maintenance. Your bowel routine would likely be similar to that pre-cancer. That is, if you had a bowel movement once a day that is likely what you would experience with a colostomy. A colostomy is not a constant flow of liquid fecal output as is the functionality of a loop ileostomy. A colostomy has fecal output 1 or twice a day and it is semi-formed in consistency, with low risk of digestive enzyme skin irritation as is the case with a loop ileostomy.

Pouching systems for colostomies allow for single-use, closed-ended pouches. Simply peel off the backing to a hydrocolloid wafer and slap it on the abdomen over the bud of a stoma. A colostomy stoma is 1/2" or less in length, a small bud of intestinal tissue that takes residence on the abdomen. When the colostomy has output, simply remove the pouch, place it in a plastic bag, and toss it into the trash. No mess. No fuss. Closed ended pouches come in three sizes - maxi, midi, and mini - so that the size of the pouch is appropriate to each person's volume of output. With closed-ended pouches, you are not "walking around the a bag of feces on your abdomen" - as is a fear and concern of many who may be contemplating an ostomy. When the colostomy has fecal output, the closed-ended pouch is changed and tossed away, a new pouch is applied in its place.

Many individuals use a discrete stoma cap during sex and intimacy. A stoma cap is like a small gas-cap that covers the stoma.

Personally, I cannot see the value of enduring with unpredictable bowel control and anal leakage for several years. I am simply shaking my head side-to-side in disbelief that your surgeon has such a low opinion of a colostomy that he would not support discussion of a colostomy, an honest appraisal of the pluses and minuses for you and the particulars of your situation.

The United Ostomy Association of America is a resourceful support group and the defacto experts on all things ostomy. Feel free to visit and hear from real people with real ostomies.

http://www.uoaa.org
- 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.

Swirdfish
Posts: 266
Joined: Sun Jun 19, 2016 3:57 am

Re: Reversal or keep ileostomy?

Postby Swirdfish » Tue Apr 18, 2017 7:45 pm

I agree with aussieasscancer. I'm almost 7 days post reversal and agree the first 2 days are hell. I think this is the system in shock. Today I commanded my own bowel movement surprising and the last 24 hrs have been great. No immodium. I'm also ULAR surgery so no rectum. I feel I can go to the shops or down the road now without changing my pants. Not easy to go through but worth the try to become normal. I too didnt like showing off my bag.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17


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