Checking I. From being MIA

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Carboxo
Posts: 25
Joined: Sat Nov 02, 2019 5:10 pm

Checking I. From being MIA

Postby Carboxo » Sat Aug 29, 2020 1:06 pm

Hello Everyone
I’ve missed everyone so much. I had to go MIA. With everything going on in the world it’s been so much. In May my sister had her ostomy reverses and it’s been hell ever since. The burning, diarrhea, crying. We got her a hand held bidet, a site bath, all kinds of creams. Calmospetine is working the best. She had a anal manometry exam which she failed. She couldn’t pass the balloon. She’s not able to do the therapy to help because of COVID. She has had her 1 year colonoscopy which they did because she is still having bleeding. The bleeding is because she a several ulcers and one is at the site of the anastomoses and where a staple clip is. The doctor told her he didn’t see any cancer, biopsied a few areas and all that came back negative for cancer. She’s still worried because of the diarrhea and bleeding. But the burning is the worst. She will refuse to eat and drink because she just doesn’t want to go to the bathroom. One problem is my sister is a picky eater and she has a hard time eating what she should now. Anyway. The are getting ready to do some kind of breath test to check for gut bacteria. Has anyone heard of this?
On the other hand, she has decided to marry her boyfriend after 15 years. She says cancer has told her she doesn’t really have time. I hate to hear her talk about time but I know it’s the reality. There is so much I want to just get off my chest but for now I’ll stop here and come back later for more.
Still surviving g and really hating what cancer does to my sister.
DS: caregiver
48, female
DX: RC, Adenocarcinoma
G2: Moderately differentiated
pT1N1bM0 Stage IIIA
Positive lymph’s:, 2/15
Baseline CEA value 2.5
Tumor invades submucosa
Perineural invasion (PNI) present
Surgical margins: clear
MSS,KRAS/BRAF status: WT
LAR robotic, colectomy, with Ileostomy 9/4/19
Radiation therapy (if any): Chemo/rad scheduled next
Chemotherapy:XELODA,CAPEOX, started 10/28/19

Lee
Posts: 6096
Joined: Sun Apr 16, 2006 4:09 pm

Re: Checking I. From being MIA

Postby Lee » Mon Aug 31, 2020 5:31 pm

I am so sorry your sister is in so much pain. From what I understand, these reversals can take a long time to recover from or training your body to a new normal. Radiation destroyed most of my rectal muscles, thus I was tied to the toilet for hours anytime I ate. I understand the diarrhea and soreness issues. For me, getting a permanent colostomy gave me my life back.

Don't know if this suggestion will help, but will throw out there just in case. "Daily enema". Many people have found great success doing this once a day, especially if they were tied to the toilet all day. I'm wondering by doing this especially in the morning, she good to go for the day. Hopefully no more pain or if there is pain, just once a day. People who have done daily enemas are generally good for 24 hours. Check the search engine at top. Several people through the years kept on line diaries on what helped them. And where to get the best supplies.

Not sure what it is called, but it's like a step stool around your toilet. Guess when your legs are elevated, it make passing BM matter pass a lot easier. I'm hoping less painful for your sister. They were pretty common at Bed Bath and Beyond a few years back.

Maybe keeping a food diary on what helps and what does not might give some insight on maybe what foods to avoid, especially in the beginning.

For what it is worth, I'm a 16 year survivor of rectal cancer, stage IIIC. Many of us are out there. We just don't always check in as often.

All the best to your sister.

Lee

P.S. Edited to add Squatty Potty is what I was trying to describe above.
Last edited by Lee on Mon Aug 31, 2020 6:01 pm, edited 1 time in total.
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!

Lee
Posts: 6096
Joined: Sun Apr 16, 2006 4:09 pm

Re: Checking I. From being MIA

Postby Lee » Mon Aug 31, 2020 5:52 pm

Carboxo wrote:Hello Everyone
. . . The are getting ready to do some kind of breath test to check for gut bacteria. Has anyone heard of this?
.


I believe they will be checking for C-diff, but I thought that was through stool samples. So I could be wrong.

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!

User avatar
GreenLakeGirl
Posts: 772
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: Checking I. From being MIA

Postby GreenLakeGirl » Mon Aug 31, 2020 7:28 pm

SIBO test is a breath test to check for bacteria overgrowth in the stomach or small intestine.

I added a specific probiotic to balance my guts: Visbiome. It's available from a pharmacy, and mine has to special-order it since they don't keep it in stock. Some insurance will cover it; mine doesn't right now. I notice an improvement when I take it—fewer episodes of burning. I haven't tried any other probiotics because this one is one of the few that has some scientific papers behind it to support its use to help those with UC and pouchitis.
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo


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