Ileostomy Reversal -- What do I pack/prep/plan?

Please feel free to read, share your thoughts, your stories and connect with others!
4us4
Posts: 19
Joined: Tue Aug 13, 2019 2:58 pm
Location: Oregon USA

Ileostomy Reversal -- What do I pack/prep/plan?

Postby 4us4 » Tue Feb 18, 2020 1:49 pm

Hey All,
I am 3.5 months past HiPEC/Cytoreductive and heading back down to UC-San Diego for my Ileostomy reversal sometime March 2020.

What do I pack? From other posts, I'm planning to pack:
-Metamucil (to bulk up / combat diarrhea)
-Diaper Ointment (to help burning buns)
-Imodium (when diarrhea gets too intense)
-Good yogurt (to get probiotics into my system in the hospital once I get the green light-- they just had that sugary kind last time - yuck)
-what else??

Is there anything I should do to prep? I googled this, but did not find much... my mom (ha,ha) said:
-flood system with probiotics as much as possible pre-hand
-do sphincter clenches... ha... my mom... but actually- is she right?
-anything else?? Or you know, from a doctor.. ha

What about future planning?
This whole past year has been a combo of house arrest aka chemo & surgery recovery--- We need a hot beach/sunshine vacation-- but I want to be on a gorgeous beach running with my kids - not just back and forth to the bathroom... From what I've read on other posts, seems like the recovery time really varies. What do you think? 3 months post reversal? 6 months? I'd really kick myself if I planned a spendy trip and spent the whole time in the bathroom.

Thanks all!
-Kelsi
DX@39yo in April19: Stage 4 Sigmoid Mets to peritoneum, ovaries, spleen
June-Oct 2019: FOLFOX, Avastin, 5FU (9 infusions)
Nov19: Cytoreductive+HiPEC at UCSD, PCI score= 8
Jan20: FOLFOX, Avastin, 5FU (3 infusions)
April,June,Aug2020: watching several small growing lung nodules

Married w/ two sons (5,1). Oregon coast-USA. Solid in my faith & firmly believe WHATEVER the future holds, God is with us & THAT is enough...while praying my socks for full recovery & chance to raise my kids to adulthood.

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Ileostomy Reversal -- What do I pack/prep/plan?

Postby juliej » Tue Feb 18, 2020 7:39 pm

4us4 wrote:...my mom (ha,ha) said:
-do sphincter clenches... ha... my mom... but actually- is she right?

Your mama is right!!! :D :D :D

Your rectum and sphincter muscles need a bit of retraining due to lack of use. Start now so they'll be good and strong by the time you have the reversal.

These can be done either lying down or sitting.

Set 1: Breathe out, then tighten and pull up the sphincter muscles as tight as you can! Keep breathing as you hold for 5 seconds and then relax for 10 seconds. Repeat 5 times. This works on the strength of your muscles.

Set 2: Breathe out, then pull the muscles up to about half of their maximum squeeze. See how long you can hold this and keep breathing. Then relax for 10 seconds. Repeat this one 5 times too. This will work on the staying power of your muscles.

Set 3: Pull up the muscles as quickly and tightly as you can, then relax, and then pull up again. Do as many of these as you can.

Do these 3 sets several times a day. As your muscles get stronger, you'll find you're able to hold for longer than 5 seconds and you'll be able to do more of Set 3 without your muscles getting tired.

Also, you might get a tube of Calmoseptine Ointment. It works much better than plain diaper ointment for sore butts!
https://www.amazon.com/Calmoseptine-Ointment-Tube-4-Ounce/dp/B0064FFP96

Hope this helps!
Juliej
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Ileostomy Reversal -- What do I pack/prep/plan?

Postby Punky44 » Wed Feb 19, 2020 1:23 am

It does seem like recovery varies depending on several factors, and recovery can continue for up to a year after the procedure before they deem whatever the state of things is as “your new normal.” Maybe to be on the safe side, wait until after your procedure to see how your first days/weeks go and what works for you and then decide from there how far out you’d need to plan for a vacation to be enjoyable. But one thing’s for sure—you definitely deserve a vacation!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

KMC21
Posts: 7
Joined: Thu Oct 25, 2018 8:14 am

Re: Ileostomy Reversal -- What do I pack/prep/plan?

Postby KMC21 » Fri Feb 21, 2020 11:12 am

Hi Kelsi:

I can share my own experience after my ileo reversal in late January 2019.

The first few weeks were definitely tough. I had to stay close to a bathroom for sure.

I had a family trip to Florida planned for mid-February and I rolled the dice and went. Basically, I had to eat very little and take Imodium. Generally I did OK and was able to enjoy myself. I was just hungry :) I think I had one bad episode that confined me to the hotel for an evening.

I took a trip to London and Paris in June and that generally went fine. Again, I was careful to eat small portions and take Imodium for the flights.

I feel like I kind of lucked out, based on the spectrum of experiences I read about before my reversal. I was so scared going into reversal, knowing that I basically had no rectum left at all--how would things work? I'm definitely not the way I was before, but it's not as bad as I know it is for so many people. I also did not have radiation, which I think makes a difference.

Good luck!
ER visit 9/25/18 with dizziness and rectal bleeding
Colonoscopy 10/2/18
Diagnosed with rectal adenocarcinoma, 10/4/2018
Moderately to poorly differentiated, 8.1 cm from verge, T3 on imaging
Low anterior resection/total proctectomy w/ temp ileostomy 11/27/2018
Downstaged to T1, no lymph node involvement, no adjuvant therapy recommended
Reversal 1/29/2019
CT scan 4/2019 clear, CEA 1.0

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Ileostomy Reversal -- What do I pack/prep/plan?

Postby Rock_Robster » Fri Feb 21, 2020 11:43 pm

Hey there, I had my ileostomy reversal a few weeks ago, so here’s a few random thoughts.

Probiotics beforehand are good, but actually the area that needs to recover the most is the colon which isn’t currently accessible via the oral route. Some studies have found going straight to probiotics after reversal actually makes things worse, as you’re rapidly introducing an artificial mix of bacteria. My integrative doc suggesting taking prebiotics for the first few weeks instead - these are the food for your natural healthy gut flora, which will allow your colon to rebuilt its own healthy bacterial mix more rapidly.

One great source of prebiotics is partially hydrogenated guar gum (PHGG). It’s often given to IBS patients, which is basically what you’ll be for a few weeks at least. It has the added benefit of being very high in fiber so it can help bulk out your stools and reduce clustering, but check with your surgeon first when you can start taking it - many want to wait a week or two to ensure the anastomosis has healed well and avoid an ileus or obstruction. You can also look into taking a prebiotic supplement like S.boulardii (I’ve been taking this 3x daily).

An electrolyte drink is good - both to replace fluids from diarrhea, but I also found it actually made things just work better as well.

Calmoseptine was definitely the best barrier cream I found - reapply lightly after each bowel movement. You’re not going to want to use toilet paper for a while - ideally a bidet attachment (or squirt bottle) is best, with wet wipes to clean up afterwards.

I brought absorbent pants (aka adult diapers) but fortunately only needed them for a few days. They were handy in hospital though when my bathroom sprinting capacity was limited! I’m 3 weeks out now and I just use a very thin panty liner when I go out in case of any near-misses.

Recovery time is sooooo individual. I read one study that said 100% of people with a ULAR were still dealing with more challenging side effects after a month, 50% at six months, and 30% at a year. I think so far I’ve been very lucky - I’m 3 weeks out and have almost complete control, and only go to the bathroom a few times per day (if I use fiber and Imodium). My surgeon suggested a minimum of 6 weeks after surgery for doing things like going back to work, longer distance travel, etc. but it might be an element of seeing how you go. A few months would sound after though. Can you book something flexible, or with shorter notice?

Good luck!
Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

4us4
Posts: 19
Joined: Tue Aug 13, 2019 2:58 pm
Location: Oregon USA

Re: Ileostomy Reversal -- What do I pack/prep/plan?

Postby 4us4 » Wed Mar 11, 2020 2:06 pm

Driving down to San Diego now... Thanks for all the help. March 17! St. Patrick's Day bowels, hope they are lucky.
DX@39yo in April19: Stage 4 Sigmoid Mets to peritoneum, ovaries, spleen
June-Oct 2019: FOLFOX, Avastin, 5FU (9 infusions)
Nov19: Cytoreductive+HiPEC at UCSD, PCI score= 8
Jan20: FOLFOX, Avastin, 5FU (3 infusions)
April,June,Aug2020: watching several small growing lung nodules

Married w/ two sons (5,1). Oregon coast-USA. Solid in my faith & firmly believe WHATEVER the future holds, God is with us & THAT is enough...while praying my socks for full recovery & chance to raise my kids to adulthood.


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



Who is online

Users browsing this forum: No registered users and 106 guests