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