Ileostomy reversal experience?

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ocstacy
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Ileostomy reversal experience?

Postby ocstacy » Mon Feb 19, 2018 3:57 am

Hi All,

My mother will have her ileostomy reversal sometimes this May. I wanted to ask anyone who has had this done, how their experience was or how can I prep and plan for my mom's pre and post surgery? I have heard pro's and con's. Here are some questions:

1. How long was your ileostomy reversal surgery? Dr. said like one hour, but he said 3 hours for her previous surgery and it ended up being almost 5.
2. Was your post op surgery recovery as intense as the first one?
3. Any advise on what to get or prep for prior to seeing Dr. for reversal?
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 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
No Cancer!! YAY!
Chemo Xeloda post-surgery following reversal 05/2018
Me: Colonoscopy age 38. 08/17 Benign polp. internal hemmy's post partum

AussieAssCancer
Posts: 246
Joined: Sat May 21, 2016 10:16 am

Re: Ileostomy reversal experience?

Postby AussieAssCancer » Mon Feb 19, 2018 4:25 am

Hi there, I’m 12 months out from mine (1yr2days to be precise) and I haven’t looked back.

1) Mine was 97 mins according to my discharge summary but my surgeon did say that my stoma was quite comfortable where it was and took a bit longer to separate so about an hour would sound right;

2) Far easier recovery than from my LAR. I took 3 weeks off. My wound was partially closed with a purse string suture and then left to heal from the inside out. It meant I couldn’t go swimming as quickly which was a bummer but it has a lower risk of infection and the scar has healed perfectly. It also reduces the amount of pulling that a normally stitched wound can experience. Definitely had more energy as well and just an easier recovery all around.

3) Nothing specific comes to mind in terms of preparing other than increasing general fitness and work on the sphincter kegel type exercises.

The first week or so after everything is hooked back up is a tad hectic and chaotic and stick to bland foods. Imodium will also be your mums friend, at least for the first little while. She’ll see improvements measured in weeks and months rather than days but it does get batter.

No doubt others will have heaps of better tips.

All the best
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)
Feb ‘18: Clear CT (NED)

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

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O Stoma Mia
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Re: Ileostomy reversal experience?

Postby O Stoma Mia » Mon Feb 19, 2018 6:02 am

ocstacy wrote:...I wanted to ask anyone who has had this done, how their experience was or how can I prep and plan for my mom's pre and post surgery? I have heard pro's and con's. Here are some questions:
...
...
3. Any advise on what to get or prep for prior to seeing Dr. for reversal?

By mid-May your mother will have been on temporary ileostomy for 7 months. This means 7 months without daily bowel movements and 7 months without using the bowel-movement muscles. Unless....

Unless she does some sort of daily Kegel exercises or daily sphincter exercises to keep the bowel-movement muscles and pelvic floor muscles in shape. So, between now and mid-May, you could try to encourage your mother to do some of these exercises every day so that when it comes time for reversal she at least has some strength in these important muscles.

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ocstacy
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Re: Ileostomy reversal experience?

Postby ocstacy » Mon Feb 19, 2018 1:44 pm

Unless she does some sort of daily Kegel exercises or daily sphincter exercises to keep the bowel-movement muscles and pelvic floor muscles in shape. So, between now and mid-May, you could try to encourage your mother to do some of these exercises every day so that when it comes time for reversal she at least has some strength in these important muscles.


Thank you so much. My mom mentions at times, she has occasional leaks down there. That is very good advice. Yes, she hasn't used those muscles in a long time.. since last October 2017. It will be 7 months on the dot. My mom is 78 and she didn't too well with recovery after her LAR. She developed a 6CM sac full of puss and I was so upset they didn't do an U/S prior to discharge. It was an abscess so she got real sick with fever, vomit, and fatigue! Those can be very dangerous and could lead to sepsis. Glad she got to the hospital just in time.
So to be honest, I am a little nervous with her going into surgery again. She does not do well with Oxycodone, so not sure what she can take for pain..

Thank you for your advice! have a good one! :wink:
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 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
No Cancer!! YAY!
Chemo Xeloda post-surgery following reversal 05/2018
Me: Colonoscopy age 38. 08/17 Benign polp. internal hemmy's post partum

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ocstacy
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Re: Ileostomy reversal experience?

Postby ocstacy » Mon Feb 19, 2018 1:48 pm

The first week or so after everything is hooked back up is a tad hectic and chaotic and stick to bland foods. Imodium will also be your mums friend, at least for the first little while. She’ll see improvements measured in weeks and months rather than days but it does get batter.


Good to know about the bland foods. Yes, we need more of that Imodium, it's so expensive. Any suggestions to get a bigger jar, maybe Costco. Hoping this will be the end of surgeries for awhile. Thank you for the encouragement. Prayers to all
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 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
No Cancer!! YAY!
Chemo Xeloda post-surgery following reversal 05/2018
Me: Colonoscopy age 38. 08/17 Benign polp. internal hemmy's post partum

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ocstacy
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Re: Ileostomy reversal experience?

Postby ocstacy » Mon Feb 19, 2018 1:50 pm

The first week or so after everything is hooked back up is a tad hectic and chaotic and stick to bland foods. Imodium will also be your mums friend, at least for the first little while. She’ll see improvements measured in weeks and months rather than days but it does get batter.


Good to know about the bland foods. Yes, we need more of that Imodium, it's so expensive. Any suggestions to get a bigger jar, maybe Costco. Hoping this will be the end of surgeries for awhile. Thank you for the encouragement. Prayers to all
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 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
No Cancer!! YAY!
Chemo Xeloda post-surgery following reversal 05/2018
Me: Colonoscopy age 38. 08/17 Benign polp. internal hemmy's post partum

Swirdfish
Posts: 278
Joined: Sun Jun 19, 2016 3:57 am

Re: Ileostomy reversal experience?

Postby Swirdfish » Mon Feb 19, 2018 4:31 pm

It's tool me a very long time to get back to a normal kind of state. I can now catch public transport. Fly on aeroplanes with the worry of if I'd have an accident. It's a long recovery process but u will get there. Anywhere up to a year. Immodium and codiene where my friends to limit my bowel functions. Yes the first couple of weeks is like hell. But I'd say I'm almost back to 100% but not quite. I had ULAR surgery.
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

Aqx99
Posts: 383
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Facebook Username: aqx99
Location: Pfafftown, NC

Re: Ileostomy reversal experience?

Postby Aqx99 » Mon Feb 19, 2018 7:46 pm

My reversal surgery was not like the typical ones. Normally, they go in through the stoma to do the reversal. I was told the surgery would take about an hour, mine ended up being 3 hours. I woke up to a huge incision down my belly because I had so much scar tissue in my abdomen and my surgeon punched a hole in my small intestine. He ended up removing 18.5cm of small intestine. So my recovery ended up being harder than the previous surgery, because that one was done laproscopically.

My biggest piece of advice for heading in to reversal surgery is get your mom hooked up with a pelvic physical therapist. I have been seeing one and the exercises she has been giving me have helped a lot. She taught me a massage technique that helps me evacuate my bowels in one movement, instead of clustering. I am already down to about 6 trips to the bathroom a day.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL
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 Diagnosed w/ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL
1/11/18 CA 125 8.6 U/mL
1/23/18 Reversal
3/21/18 CT showed enlarged thymus
4/6/18 PET

Annau
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Facebook Username: Anna Urbani

Re: Ileostomy reversal experience?

Postby Annau » Thu Feb 22, 2018 11:54 am

Hello there!
I have done reversal in March last year. I've had huge ups and downs.
The reversal itself lasted an hour in the operation room. But the wound took three months to heal. I had to go change the mesh every day in the first month and then I asked to go every other day.

As for the rest, you will have to prepare your mother for many changes. The first few months were a nightmare for me. I really considered getting the bag back!!!! Or die. Really.
The doctors were not helpful as they don't seem to have a clue. I was pooping all the time. I was sore and tired.

So it had been 10 months and little, very little progress. I was having a really tough time during the day and alot of stools at night that kept me awake.
But lately, before going to ask for a permanent ostomy, I decided to search for LARS "friends". And I found a Facebook page. There the advices just poured in. What an amazing experience. Had I had those advices earlier I would have been much happier!!!

So:
1)Metamucil
-with your meals and take it thick like a thick pudding. And don't drink during meals!

2)avoid certain foods. The ones that made you sick(diarrhea) before will make you sick now. I removed sugar, chocolate, fried foods, any beans and nuts, wheat. But that's just me. She will have to figure that one out for herself.

3)small portions. Eat and wait 20minutes. She will feel saciated after 20minutes, I promise

4) intermitting fasting. Careful with this one though. She will need to have good food intake before she could consider intermitting fasting. I would say she asks her nutritionist if it's ok after a few months.
But it definitely worked for me!!!!!

5)enemas, but only after a year because things need to be really well healed. And I use it only when I have to be somewhere with no toilets. Otherwise my gut will get lazy. And the I'll be stuck with fragmented bowel movements.

Now I feel great after a month of this new life!

I hope all goes well for her!
Good luck!

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ocstacy
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Re: Ileostomy reversal experience?

Postby ocstacy » Mon Feb 26, 2018 1:51 pm

As for the rest, you will have to prepare your mother for many changes. The first few months were a nightmare for me. I really considered getting the bag back!!!! Or die. Really. The doctors were not helpful as they don't seem to have a clue. I was pooping all the time. I was sore and tired.


Thank you for your reply. I kinda feel like she is doing so well with the pouch now, why reverse it as she seems to be fine. Any thoughts? I have also heard pros and cons about the reversal. Some say the surgery should only be 1 hour, but some end up 3 hours and with another incision. I also was told for her first surgery, she would only have about 3 small incisions and she woke up with a c section. poor mama. I really hope that she recovers okay with this second surgery. The first one was a hard recovery, she is 78 years old. Do you know how long until the reversal after chemo stops? Maybe two months or so?

Thank you,

Stacy
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 back @ hospital due 2 abscess/hernia - back home 11/06/17 antibiotics
NO LYMPHS INVOLVED! NEAR PATHOLOGICAL RESPONSE! YAY! :shock:
No Cancer!! YAY!
Chemo Xeloda post-surgery following reversal 05/2018
Me: Colonoscopy age 38. 08/17 Benign polp. internal hemmy's post partum

ams5796
Posts: 2274
Joined: Fri Feb 06, 2009 10:07 am

Re: Ileostomy reversal experience?

Postby ams5796 » Mon Feb 26, 2018 2:45 pm

I hate to be Debbie Downer :wink: but I agree with you. If she's doing well with the ostomy maybe she would be better off keeping it. Since she's 78 I could see her having trouble with recovery. The surgery itself isn't that bad. It's the time afterwards that can very tough to deal with. I got reversed ten years ago but I do daily enemas to deal with all my bowel issues. There are many threads on here and boards on FB detailing the trials and tribulations of reversal surgery.
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

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juliej
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Re: Ileostomy reversal experience?

Postby juliej » Wed Feb 28, 2018 6:44 pm

Have you asked her how she feels about it? Maybe she's fine with the pouch. Maybe she'd prefer her old plumbing back. I think I'd leave that decision up to her after she's informed about the pro's and con's of both sides.

The surgery itself should not take long. You'll need to tend the wound afterwards. Sometimes it's stapled, but mine was packed with gauze so it had to be changed daily until it healed up in about a month. Most times reversals are done shortly after ending chemo unless the patient is too weak.

Did your mom have radiation prior to her initial surgery? There are some trials now where they aren't using it at all, just chemo for tumor reduction prior to surgery. I didn't have radiation and consequently had an easier time adjusting after the reversal. The radiation causes a lot of collateral damage to the colon/rectum.

If your mom wants the reversal, I would stock plenty of Imodium, baby wipes, Colace (for constipation, in case things go the other way), Gax-X, and maybe panty liners or Depends for her first trips out shopping, etc. - just to make her feel more confident. Also buy a tube of Calmoseptine Ointment - it will help greatly with a red and raw bottom from going too much (it's called "clustering"), which happens a lot in the first few weeks.

As far as diet, start easy with low residue foods and gradually increase the types of food. Add new items every few weeks. If something doesn't work, then stop eating it and try again later. It took me a year to be able to eat popcorn. But I was able to eat fruit and salads after 6 weeks or so. Also, remember the same things work after the reversal that worked for the ileostomy -- bananas, rice, peanut butter, applesauce, oatmeal, starchy foods -- those are all good things to eat at the beginning because they lessen the odds of diarrhea.

Also, I can't emphasize enough the importance of probiotics. Her intestines have been "offline" for awhile now and she needs to repopulate her gut with healthy bacteria. That will help a lot with diarrhea and gas issues. Yogurt, kefir, or a probiotic pill will do the trick. I use Jarrow brand (Jarro-Dophilus + FOS). Try to get a brand that's kept refrigerated because they have the most viable strains of bacteria.

Hope this helps!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 12/13/2017, CEA<1

heiders33
Posts: 179
Joined: Sat Nov 04, 2017 11:08 am

Re: Ileostomy reversal experience?

Postby heiders33 » Sat Mar 03, 2018 9:21 am

Thanks for this information, juliej. I just ordered some of the ointment and some baby wipes in preparation for my reversal on March 12. I have been taking probiotics and doing pelvic floor exercises all through chemo so I feel pretty well prepared. I also have some Lomotil on hand and will probably get some Immodium when that runs out (if necessary).
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal

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O Stoma Mia
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Location: Budapest

Re: Traveling for holiday

Postby O Stoma Mia » Mon Mar 05, 2018 2:29 am

heiders33 wrote:... I just ordered some of the ointment and some baby wipes in preparation for my reversal on March 12. I have been taking probiotics and doing pelvic floor exercises all through chemo so I feel pretty well prepared. I also have some Lomotil on hand and will probably get some Immodium when that runs out (if necessary).

I notice from your posts that you are having your reversal a week from now, but planning a trip to Bermuda 6 weeks later.

My question would be: Do you have any concerns about taking a trip like this only 6 weeks after your reversal? If so, you might want to consider starting a new thread by posting your concerns and asking members here if they have any tips on overseas air travel that soon after reversal.

Threads like this have been started in the past when patients have had specific concerns over traveling for a holiday before/after reversal, For example:

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53429&p=422885#p422885

heiders33
Posts: 179
Joined: Sat Nov 04, 2017 11:08 am

Re: Ileostomy reversal experience?

Postby heiders33 » Mon Mar 05, 2018 9:09 am

Thanks, OSM. No I don’t have any concerns because it’s only four nights and a 2 hour flight. I’ll be sure to pack whatever I need - Immodium, etc. If I have any problems I might reach out but I’m not concerned at the moment.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal


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