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Old 10-11-2007, 09:34 AM   #1
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tazziebear HB User
Fistula of the colon

What kind of test will find a fistula that deals with the colon.The doctor I've seen won't help me as I'm high risk.So I've been bounced around by doctors in this horrible town trying to get help.They just did an MRI. That would be fine but they did not use the dye.Basically worthless test.The MRI was my hope of getting out of here and going to a University to get fixed.What do I do know?

 
Old 10-11-2007, 07:19 PM   #2
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Re: Fistula of the colon

Where is your fistula located?

 
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Old 10-11-2007, 09:35 PM   #3
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Re: Fistula of the colon

My fistula they think is connected somewhere from the colon to the vagina.However the bladder is somehow involved in this connection as well.

 
Old 10-12-2007, 06:21 PM   #4
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Re: Fistula of the colon

See a gastrologist.

 
Old 11-16-2007, 09:03 AM   #5
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Re: Fistula of the colon

Hi Tazziebear,

I am in the same boat as you are. I went to a colon surgeon and he ordered a barium enema test to be performed. I already knew I had a fistula. The radiologist said it was a slight one and somewhat hard to see. He recommended another test which my surgeon has not ordered. I have so far decided to let things be and see what happens. I have been really relieved to read the more positive posts of the latest resections that have been done. I hope you find help soon.
Clancey

 
Old 11-16-2007, 09:33 AM   #6
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Fistulas - a word to the wise

Hi,

I thought I would share our experience of fistulas. My wife had a fistula develop from the terminal ileum to her bladder and another that was not picked up that leaked into her abdominal cavity. Her physician prescribed immuno-suppressants to try and heal the fistula.

However, with the benefit of hind-sight, this was counter-productive as the immuno-suppressants simply allowed infection to set in from faecal material leaking from the gut into the urinary tract and her abdomen. As a consequence she developed sepsis, pneumonia, spinal osteomyelitis and a blocked ureter from swelling and scar tissue.

Basically, she needed a 6 month stay in hospital to recover. If we had known then what we know now we would not have left things for so long and we would have pushed for a resection sooner.

As it was she needed a temporary ileostomy in addition to the resection that was reversed after 12 months. She has now recovered apart from significant sacro-illealic pain as a result of the spinal osteomyelitis that eroded her spine.

My intention is to share our experiences and not to scare you. I believe it is important that you consider all the pro's and cons and that you empower yourself with knowledge.

My wife's symptoms of Osteomyelitis included extruciating back pain that radiated down both her legs, particulalry down the thighs and into her feet. She also experienced considerable fevers and "cold sweats". This was eventually put down to the sepsis. She also suffered cold sores all over the bottom of her face and numerous mouth ulcers. These resulted from the fact that her body was having to fight so hard to combat the infection in her body, while she was finding it difficult to keep nourished.

My recommendation is to keep pushing your health professionals to get accurate and up to date data points for them to make a clinical decision based upon the best available facts.

I hope you find this information helpful and I wish you all the best with your ongoing management of your condition.

 
Old 11-17-2007, 06:13 PM   #7
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Cool Re: Fistula of the colon

I'm so sorry to hear about your wife.I'm still trying to get the help I need.Where I live the doctors aren't too smart on fistulas.I think they'd rather I'd die vrs help me.Everyone says its a fistula but no one wants to fix it.Has anyone had bubbles in your urine?Or passed gas out of another organ besides the colon?I do and have been.I will continue to try and find a doctor to help me.Thank God there is a place that you can go and talk to other people about this serious problem.Any info on symptoms would be greatly appreciated.Thanks again,Tazziebear

 
Old 11-17-2007, 06:17 PM   #8
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Talking Re: Fistula of the colon

Quote:
Originally Posted by Clancey View Post
Hi Tazziebear,

I am in the same boat as you are. I went to a colon surgeon and he ordered a barium enema test to be performed. I already knew I had a fistula. The radiologist said it was a slight one and somewhat hard to see. He recommended another test which my surgeon has not ordered. I have so far decided to let things be and see what happens. I have been really relieved to read the more positive posts of the latest resections that have been done. I hope you find help soon.
Clancey
Clancey,How did you know it was a fistula?My fistula they say I've got is hard to find on tests and I'm tested out!Any info as how to get my doctors to find it would be greatly appreciated.Thanks,Tazziebear

 
Old 11-18-2007, 04:04 AM   #9
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Re: Fistula of the colon

Something I should have added to my post was that my wife has made excellent progress, largely through nutrition. After the Crohns op she no longer needed any medication for the condition as the section of affected bowel had been removed.

We have largely managed her condition going forward through effective nutrition. She has now been off the medication for 2.5 years and we have had a beautiful healthy baby.

There is definitely light at the end of the tunnel. Sometimes one needs to be assertive with the medical profession to get what you want. If gas is being passed out of the urethra I would suggest you force the issue with your health professionals.

It certainly flagged up as a tipping point in the intervention regimen with our gastro-enterologist. By the way, our gastro-enterologist has an international network of connections (from conferences he speaks at) and he may be able to recommend someone in your vicinity. Which part of the world do you hail from?

 
Old 11-18-2007, 04:45 PM   #10
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Smile Re: Fistula of the colon

I live in Redding,California.Northern part of California.I think that my biggest problem has been thus far trying to find a doctor to help me.I have other health problems and I think these doctors think I'm high risk.With some doctors they are more worried about medical malpractice vrs helping people.Plus having cancer and liver disease I've had to educate myself to help myself because no one else will do it for me.My OBGYN had me black balled so no doctor will help me.Hes a primadona who didn't like that you knew almost as much as he does.God complex.So thats another problem I'm dealing with.have Marginal B Cell Lymphoma,got HepC in surgery and Arthrtis from Hep C.Plus another auto Immune disease of unknown origin.I'm so happy for you and your wife that her health is doing good and what a blessing to have a baby after all you two have gone through.Thats wonderful!Thank You for talking to me I really appreciate it alot.My hubby and I are at our wits end trying to get help for this condition.Plus keeping my cancer and hepc in check too.Take care,Tazziebear

 
Old 11-19-2007, 01:41 AM   #11
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Re: Fistula of the colon

Wow Tazziebear!

I thought my wife had a thick medical history file but youo certainly win on that one!!

I'll get in touch with my wife's gastro-enterologist today and I'll let you know how I get on.

The approach taken by health professionals for my wife's combination of medical problems was to create a "care team" with specialisms in the different conditions etc. For example, she had a microbiologist, a gasro-surgeon, a gastro-physician, a cardiologist and a pain management specialist. They all worked together to formulate a care plan and to consider the pros and cons of the treatments so that one did not create a problem for the other.

I would suggest that you need a team that will adopt the same approach. Perhaps try to find someone who will take the lead on this. I'll try to give some help from this end and let you know what our gastro-team suggests.

Best regards.

Chat soon.

 
Old 11-19-2007, 05:12 PM   #12
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Re: Fistula of the colon

Thank You so very much for all the information.I really do appreciate it.Its hard when a person is ill let alone having no doctors to help is even worse.Sometimes I feel hopeless in this new health crisis.But with any luck I'll find some good doctors too.Thanks again,Tazziebear

 
Old 12-03-2007, 09:03 AM   #13
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Re: Fistula of the colon

Hi again tazziebear,

I've spoken with our gastro-physician and he is sadly not able to help. Perhaps use your own network of contacts to identify recommended health professionals who in turn may be able to recommend someone.

I hope you have success.

 
Old 01-11-2008, 01:54 PM   #14
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Re: Fistula of the colon

Hi Everyone! In 2005 I started having some pretty strange things happen...at least strange to me! I felt bloated and "full" all the time and I had cronic constipation. Then I started "passing gas" from my vagina and urinary tract and had stool coming from my vagina. After seeing various doctors and having numerous tests, no one could tell me what was happening. Every test came back normal except for my white blood cell count, which led my Uro. doctor to go on a fruitless search for bladder cancer. After a few months of "normal" test results(every test you could imagine) the doctors started acting like they thought I was making things up, even though my PCP himself told them he saw the stool in my vagina. At that point I even started doubting myself! Finally, as a last resort my husband and I made a 2 hour trip to the Cleveland Clinic. I wasn't with the doctor more than 5 minutes before he told me exactly what I had and after a quick vaginal exam he told me exactly where it was located. Within 2 weeks I had my surgery. I had a "complex" fistula, a connection between the colon, vagina and bladder as a result of an infection from diverticulitis. He said it had been forming for years, these things don't happen over night.
Sorry I've been so graffic, but my intent is to maybe help others going through what I did. The C.Clinic doctor told me that this type of fistula usually does not show up on the tests that the others ran on me. Great, I went through all that for nothing!
Please don't give up...there is help out there

 
Old 01-15-2008, 04:06 PM   #15
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Re: Fistula of the colon

Gmtric,

What kind of surgery did you have? Was it a colon resection? Are all your symtoms gone? What was the recovery like? I have similar but not the exact symtoms, and very nervous about having surgery. Any info you can share would really be appreciated.
Thanks so much,
Clancey

 
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