Holiday Weekend Fistula

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AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Holiday Weekend Fistula

Postby AppleTree » Sun Jan 14, 2018 3:30 pm

Seems like everything always happens to me on weekends.

Yesterday I had a particularly bad day with diarrhea. But it was also coming out of my viginia. Is this a medical emergency or I can wait until Tuesday?

I was supposed to have chemo on Friday. My platlets were the lowest yet...under 50. So, now I am rescheduled for this coming Friday (that makes a 3 week gap for me, which has been fairly typical due to platlets. On Friday I had been happy to report to my oncologist that I really only had the runs 2x in 2 weeks and not severe. Yesterday was severe.

In the meantime, until Tuesday I am supposed to wear a red hospital bracelet with codes on it already matched to my blood type...to speed things up in case of an emergency.

Just not sure best course of action. Anyone have similar experience? Not sure what it all involves.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

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

Re: Holiday Weekend Fistula

Postby Lee » Sun Jan 14, 2018 4:08 pm

I had the bag, so can not really give any advice. Can you put in a call to your Onc and tell them what is going on. You may need to be seen, butt let your Dr. make that call.

Are you having any pain. My understanding, fistula is suppose to be painful.

Good luck, diarrhea is the worst.

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!

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Holiday Weekend Fistula

Postby MissMolly » Sun Jan 14, 2018 4:10 pm

Apple tree:
Oh . . how distressing for you. Rectovaginal fistulas can be agonizing simply due to the personal natural of foul-smelling vaginal discharge and leakage of liquid feces.

My aunt, with whom I was very close, developed rectovaginal fistulas as an unfortunate byproduct of radiation for ovarian cancer. Radiation caused ulceration and inflammation of both her GYN anatomy and lower rectum. The ulceration and inflammation weakened the epithelial tissue separation between the vagina and rectum = fistula.

I would not think this is a medical emergency needing immediate ER attention. I would encourage you to call your colon surgeon tomorrow morning and ask for an expediated appointment. If you experience an elevated temperature or purulent/puss discharge, then an emergency room visit would be appropriate. Often women are placed on antibiotics pending more definitive evaluation and treatment.

Some small fistulas will heal and close on their own. A fistula larger than 2.5 centimeters will often need a surgical approach - ranging from irrigation to flush and clear the tissue deficit + full-thickness tissue closure to a complex surgery that involves a flap of vasculized tissue that is transposed to close the deficit.

My aunt, unfortunately, had a difficult experience with fistulas. Her lower pelvic tissue was fragile from the effects of radiation. Surgical repair did not hold and failed. Fortunately, the fistula did not cause her pain. She was able to wear a low-profile undergarment that contained the fecal discharge without anyone being the wiser.

I am genuinely sorry that a fistula has been added to your health woes. I hope you find the support and care you need from the many fine people on this forum to help you through.
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.

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Holiday Weekend Fistula

Postby AppleTree » Mon Jan 15, 2018 11:34 am

Thank you for your responses. My sister was very worried and we went to Beth Isreal Deaconess ER last night...for hours. My potassium was very low so they gave me the horse pills. Good news is my platlets went from below 50 to 80 in 2 days! They did an adomine to pelvis CT scan to see if any absess, etc. Night radiology read the report as nothing significant. Day radiology called this morning and told me to get the disc to my oncologist for comparison as there is a small cyst in the liver. I had CT scans in November, July and Feb so they definitely have scans to compare.

I have a power port and they were really happy I had the wallet card with flushing instructions, etc. I guess different ports are different! I also had a list of my current meds with me. Anything to help them out.

They said what I really needed was a barium enema and they do not do that in ER. So, working on that, but my oncologist office is closed today and she is out until the end of the week.

I do not consider it an emergency because I have no pain, but my sister is very worried about infection. Last infection ended up with me being weeks in the hospital, so I understand! The Neulasta shot keeps my white blood cell count high. That is a good thing despite the killer headache I always get from that.

So, all things considered, ER provides some peace of mind even if they do take forever. I get It! Certainly if car accident people, etc. would take priority and rightly so.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Holiday Weekend Fistula

Postby NHMike » Mon Jan 15, 2018 3:00 pm

AppleTree wrote:Thank you for your responses. My sister was very worried and we went to Beth Isreal Deaconess ER last night...for hours. My potassium was very low so they gave me the horse pills. Good news is my platlets went from below 50 to 80 in 2 days! They did an adomine to pelvis CT scan to see if any absess, etc. Night radiology read the report as nothing significant. Day radiology called this morning and told me to get the disc to my oncologist for comparison as there is a small cyst in the liver. I had CT scans in November, July and Feb so they definitely have scans to compare.

I have a power port and they were really happy I had the wallet card with flushing instructions, etc. I guess different ports are different! I also had a list of my current meds with me. Anything to help them out.

They said what I really needed was a barium enema and they do not do that in ER. So, working on that, but my oncologist office is closed today and she is out until the end of the week.

I do not consider it an emergency because I have no pain, but my sister is very worried about infection. Last infection ended up with me being weeks in the hospital, so I understand! The Neulasta shot keeps my white blood cell count high. That is a good thing despite the killer headache I always get from that.

So, all things considered, ER provides some peace of mind even if they do take forever. I get It! Certainly if car accident people, etc. would take priority and rightly so.


Nice thing about Boston is that there are a lot of great ERs in the area.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT


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