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I need to talk with someone who knows something about fistulas, getting rid of "brain fog" and fatigue

By Anonymous August 16, 2015 - 8:15pm
 
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I was rushed out of Africa July 1st when I had 8 lbs of a metalic smelling liquid pour out of my vagina in a night-long gush followed by additional drainage. The dr. who sent me home gave me a pelvic, said i was red inside, swollen, showed me thick blood which did not drip off the side of the speculum - along with additional drainage, still smelling metalic. ( This is after an Oct 7, 2014 total hysterectomy of level 2 ca found in vaginal area, no signs of it elsewhere) (December Radiation therapy - 4 tx, 10-12 minutes. I felt pain in my stomach, a pulling sensation after that, and urination was uncomfortable, I also began light blood-tinged draining which I was told was normal after radiation. I felt "sloshing" of liquids after that, was told it was nothing. (sometimes it was metalic, but that tended to go away so I did not report it) I was told all this would go away- it did not - nor did the brain fog, and fatigue despite my request for a nutritionist to help me figure out what to do to be healthy while in Africa. I cobbled together homemade "pads" for the airplane ride, came home, and went to the CA Dr at The James who said the CT scan showed no incidence of any returning cancer (along with blood work). He gave me a pelvic, said I was red in the back wall where the vagina had been take (laproscopic surgery) and said possibly there were fistula(s) there. He did not help me with the incessent sleeping, slight chills and fevers I had off and on, and the ongoing drainage. A couple of weeks later, I had a swelling, something like a boil that formed at one of the surgical scars from the CA surgery. It was swollen, and hot - but then about a week later, resolved itself and so I did not report it. But since then, another laproscopic hole did the same thing . The CA dr said to not worry. I called my General Practitioner who had me come in. I told her about how I continued to leak, with metalic smells coming and going, and then returning as well. She examined me, said she thought she saw a hole in the back wall of where they sewed me up and said she had read the CT scan report which said that they could not see the entire region where I had surgery because of interference from imagery due to the two hip replacements I have. She ordered a bariatric enema and colonoscopy (mid July)- which can not be done until August 31. She did say she thought that I might have 1 or more fistulas but said there was nothing to be done about them. I asked about diet, and ways to ensure best health given the possibility of infection - and she said she would wait to see the test results first. She did not respond to my questions about sleep and brain fuzz (I am on optifast - have lost 50 lbs- and since this returning to the USA have decided to try to eat without their optifast - but that has changed nothing. Also, since then, another laproscopic scar has had a boil - the second which leaked). Since I really want to go back to Africa because of my responsibilities there, I called my cousin, a MD who serves in Tanzania 1/2 of the year. When he heard my symptoms, he said I should press to get responses from my doctors about diet/nutrition, and that I should also have a bowel smear since there could be some involvement of the bowel in all this (I have had funny leaks sometimes when I had a bowel movement - and once, there were dried bits that looked like coffee grounds. Because he knows about African diseases, he said the drs should also be testing for possible parasitic issues given that I work in back villages and live alongside the people. I asked about just going back to Africa since the doctors were being so slow - but he said that would be unwise since if they find a fistula it may either be minor or serious with implications with returning cancer. I don't know what to do. Where can I get some reading materials on fistulas related to cancer, and nutritionist support in determining what I can best do toward physical healing from the CA and radiation burning that is frequently damaging? I hate being a baby but if I go back to Africa I can easily be in serious trouble if I do not handle this situation for best outcomes (NO medical services - even the dr who initially told me to go to the US because there was no adequate care in Tanzania for cancer - has since moved away. I am Carolee Uits. Thanks. God bless.

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Guide

Hello Carolee,

Welcome to the EmpowHER community. I am so sorry to hear about your ordeal, and as of yet, not getting any definitive cause for your symptoms.

For now, you need to remain in the U.S. Have you been evaluated by a gastroenterologist and an infectious disease specialist? If not, I urge you to speak with your primary care physician and ask for a referral for both of these specialists.

I can provide you with general information.

In stage II vaginal cancer, the cancer has spread from the vagina to the tissue around the vagina.

Surgery is the most common treatment of vaginal cancer. If the uterus and cervix are taken out through a small incision in the abdomen using a laparoscope, the operation is called a total laparoscopic hysterectomy.

A fistula that has formed in the wall of the vagina is called a vaginal fistula. A vaginal fistula that opens into the rectum is called a rectovaginal fistula. A vaginal fistula that opens into the colon is called a colovaginal fistula. A vaginal fistula that opens into the small bowel is called a enterovaginal fistula.

A fistula can develop following surgery to the back wall of the vagina and radiation therapy to the pelvic area.

A fistula lets urine or feces pass into your vagina. If you have a rectovaginal, colovaginal, or enterovaginal fistula, you most likely have foul-smelling discharge or gas coming from your vagina.

Your genital area may get infected or sore. I am concerned that what you are calling boils are infected areas caused by leakage of stool, which would explain the fever and chills as well as fatigue and brain fog.

A gastroenterologist can use an endoscope to examine and locate a fistula. MRI of the pelvic area would help in the diagnosis.

Carolee, please stop taking Optifast. If you have been taking the high fiber content product to lose weight, and do have a vaginal-rectal fistula, the added fiber in your diet could be making matters worse.

I think you need a thorough work up and a consultation with an infectious disease specialist who can rule out any parasitic or bacterial infection that you could have contracted while in Africa.

Regards,
Maryann

August 17, 2015 - 8:39am
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