Haven't been on in a while, but more good news!

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Maia
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Joined: Fri Aug 24, 2012 8:00 am

Re: Haven't been on in a while, but more good news!

Postby Maia » Thu Mar 23, 2017 8:08 pm

You got this, Beans!! Enjoy with your little one and all the family :)

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

Re: Haven't been on in a while, but more good news!

Postby MissMolly » Thu Mar 23, 2017 10:33 pm

Beans:
With regards to your ongoing diversion colitis . . .

An unused and hibernating segment of colon + rectum is not necessarily a happy resting colon and rectum.

At the heart of the problem that is diversion colitis is the absence of the regular passage of feces in the segment of colon and rectum that is disconnected.

Poop/feces has a purpose. Poop/feces contains long-chain fatty acids that serve to nourish the tissues that line the intestinal lumen. A segment of colon/rectum that is devoid of the regular passage of feces becomes dry and parched and cracked owing to the lack of the long-chain fatty acids normally found in poop/feces. The dry environment leads to altered pH levels that then attract an overabundance of bacteria to flourish. The dry environment also lends to inflammatory processes. It is less that you have an active "infection" that will benefit from antibiotics and more that your diverted segment of colon/rectum is malnourished and inflamed due to the lack of passage of poop/feces and the inherent long-chain fatty acids contained.

Corticosteroid creams and foams (ex. Proctafoam) help with symptom control in dampening down the inflammation but do not correct for the root cause of the problem (lack of long-chain fatty acids). The use of antibiotics (typically Flagyl or Cipro) also help with symptom control but do not correct for the root cause of the problem.

Long-term control of recurrent diversion colitis can be found with fecal transplantation. Yep. You can easily transfer some of the feces from your ostomy pouch into your rectal stump, providing the nourishment that is sorely lacking. While the concept may initially make you cringe and feel squeamish, give the concept a quiet moment of reflection. It is your own poop. It is poop that would normally have traveled down the full length of your digestive tract, just as it was intended to do and to serve its larger purpose in nourishing the intestinal tissues. Poop/feces has a purpose. Its purpose is to nourish the tissues that line the intestinal lumen. The body in its design and function is genuinely amazing.

There is an active thread on the UOAA forum that discusses fecal transplantation for the treatment of distressing diversion colitis. Members discuss their techniques, successes and failures. Feel free to visit the UOAA forum and read through the thread and give thought to the approach. One of the UOAA members, BillG (a retired civil engineer) writes openly about the process he uses and his success in alleviating recurrent diversion colitis.

www.ostomy.org
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

mtipte
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Facebook Username: mario tipte
Location: Lima, Peru

Re: Haven't been on in a while, but more good news!

Postby mtipte » Fri Mar 24, 2017 11:16 pm

This is geat news mamabeans.

Hope you will recover soon. I'm praying for you!

God bless you.
Dear Mum 60 y/o
dx 09/16 RC III CEA 9
Chemo/rad 28 from 10/16 till 12/16
Xeloda
multiple lymph nodes
Adenocarcinoma low grade invasive
Now 2000 mg Xeloda for 2 weeks as maint. before surg.
24/01/17 CEA 4,9
APR surgery permanent colostomy :( 24/03/17
3/26 nodes involved -LVI - clean margins
Staged after surgery: T3N1Mx
Infection due to bladder problems. Slow recovery.
CEA 1.7 :)
Adj. Chemo Xelox 6 rounds 29/04/17
After round 3 CT Scans Clear 15/07

God is faithful. Only Jesus.

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BeansMama
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Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Haven't been on in a while, but more good news!

Postby BeansMama » Sat Mar 25, 2017 7:54 am

Thank you everyone, for the support and advice, I hope the pelvis stuff isn't serious too. All we can do is wait and see I suppose.

Hope you all are enjoying your weekend. I had treatment on Tuesday, finally over the fatigue part of it I think but now the bone pain sets in.

Keeping all of you in my thoughts and prayers.
Beans.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Haven't been on in a while, but more good news!

Postby Lee » Sat Mar 25, 2017 10:48 pm

BeanMama

So GLAD to hear Larry is in "suffer" mode. Hope he disappears to the world beyond. The sooner the better.

You are never far from my thoughts and prayers, hope you recover from you most recent treatment and back to being a mom ASAP.

Always,

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!

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CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: Haven't been on in a while, but more good news!

Postby CRguy » Sun Mar 26, 2017 1:34 am

"Larry" .... don't let the door hit you on the way out ... Beee-atch !!!! :twisted:

Keep kickin' it ole skule BM !!!!! :shock:
Don't retreat ... RELOAD sista'
WORD !

Mega Cheers
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Haven't been on in a while, but more good news!

Postby fumaros » Sun Mar 26, 2017 7:34 am

That is awesome news. I pray the treatment keeps working and you can have surgery.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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BeansMama
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Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Haven't been on in a while, but more good news!

Postby BeansMama » Mon Mar 27, 2017 8:30 pm

Thanks Lee, CR, and Fumaros! Keeping up the fight. Won't stop until Larry has been chased the heck out of dodge!!!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Need2talk
Posts: 32
Joined: Sun Oct 02, 2016 7:24 pm
Facebook Username: Janicejones

Re: Haven't been on in a while, but more good news!

Postby Need2talk » Mon Mar 27, 2017 9:45 pm

So glad you posted!! Tell Larry to beat it and I am happy for your good news!!! I keep thinking about you and sending you good vibes!!!

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CRguy
Posts: 10472
Joined: Sun Feb 10, 2008 6:00 pm

Re: Haven't been on in a while, but more good news!

Postby CRguy » Mon Mar 27, 2017 10:09 pm

BeansMama wrote:Won't stop until Larry has been chased the heck out of dodge!!!

Damn straight !!!! = WORD !

Cheers sista'
CR
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Joannerogers
Posts: 260
Joined: Tue Jun 16, 2015 4:50 pm

Re: Haven't been on in a while, but more good news!

Postby Joannerogers » Thu Apr 06, 2017 1:13 pm

Great wonderful news!

LARRY......BE GONE!
53yo married 27 years, 2 children, 24 and 25
Diagnosed april 23,2015 rectosigmoid
Starting CEA 1845
Port placement and liver bx April 27
Folfox started april 29
Avastin added on May 6
Stage IV crc with mets to 50% of liver

10/13/15 dc'd transfusion #12...toxic
Pet/ct scan on 11/3/15
20% liver resected all margins clear 11/30/15
8/18/15 cea 21.
9/15/15 cea 13.9
10/13/15 cea 14.4
1/22/2016 cea 2.5
LAR 02/15/16 all clear

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: Haven't been on in a while, but more good news!

Postby MDK » Thu Apr 06, 2017 6:36 pm

Wonderful Beans!!

I am all about kicking Larry to the curb.

Fight on baby girl!

Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Haven't been on in a while, but more good news!

Postby LPL » Thu Apr 27, 2017 12:16 pm

Hi BeansMama, How are you?
Thinking about you and hoping all is well.
Kind Regards /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets


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