PLEASE HELP - Fistula and Humira

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ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 5/26/2009 2:54 PM (GMT -7)   
Do any of you have success with fistulas healing because of Humira.  Remi doesn't work anymore, and I have a fistula that is absolutely killing me.  Stories would help.  The reason I ask is because I have an HSA and I would have to come up with the first $3000 out of my own pocket, which I can and can't afford, you know what I mean?

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/26/2009 3:04 PM (GMT -7)   
Hello,

Are you in a lot of pain?? I know you are having trouble with your "special friend" -- or "fiend"! But are you really in a lot of pain that means you need to see the doctor now?? Do you have a fever (even a small one) or real pain when you tough the area?

Just concerned about you.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 5/26/2009 3:16 PM (GMT -7)   
I'm in extreme pain, we're trying to be agressive about it. There has been a lot of leakage. Pain management has been an issue.
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/26/2009 3:53 PM (GMT -7)   
What worked best for my fistualas were Imuran and 6MP. Unfortunately, those drugs also made me feel like crap. When I reduced them enough that I felt better, the fistulas started returning.

Humira helped a little bit. Sometimes they would start to close up, but then would start flaring again. The fistulas were never unbearable, but did hurt and weep at times.

It was SCD that actually healed my fistulas. Don't ask me how, but something on my former diet was aggravating them. Maybe it's because SCD reduces the bad bacteria in your intestines, and that's what allowed them to heal. Don't really know. But after 1 month, they were flat, painless, and no longer weeping, and after 4 months they were closed. My colonoscopy didn't show anything, so they must be healed on the inside too.

I don't think most people's fistualas heal quite that fast on SCD, so it was probably a combo of the diet and the Humira.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/26/2009 3:59 PM (GMT -7)   
I'm wracking my brain here trying to remember, but I don't think I was on humira when my fistula popped up. It just happened to be there around the time I had to have emergency surgery for a pregnancy so I was on IV steroids and antibiotics for a week which closed it right up..of course the antibiotics like to kill the balance between yeast and bacteria, but that is a whole other story.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/26/2009 4:43 PM (GMT -7)   
LMills has an idea there. Have you tried Flagyl or Cipro to help heal it? Both are supposed to be helpful, just be sure to take lots of probiotics to keep your gut balances.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


ExJohnson
Regular Member


Date Joined Feb 2009
Total Posts : 128
   Posted 5/26/2009 4:58 PM (GMT -7)   
I have actually stopped taking probioticcs because I figured the antis would just kill them off. SHould I be taking them?
I am a pre-30yr. old who has been diagnosed with Crohn's for 14 years.  Symptoms change from cramping and weight loss to severe anemia with fatigue and diarrhea. 
I'm DONE (D-O-N-E, DONE!!!) with immuno-suppressants.  Tremble, yee Pharmacuetical companies, for you will not withstand the aggressive onslaught of our healing!
new prescription from natural doc,
3.5 grams Chlorella daily.
4.5 mg Low Dose Naltrexone nightly. 


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/26/2009 5:41 PM (GMT -7)   
My GI has always told me to take probiotics but ESPECIALLY if you are on antibiotics. The best thing to do is take your probiotics about two hours after the probiotics. I always made sure my stomach was empty for the probiotics as well.
You really should be taking them if you are on antibiotics to help balance out the effects.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 5/26/2009 8:02 PM (GMT -7)   
I am so sorry you are in such pain. I know it can just get horrible!

With all the poking your docotrs did today, did they detect any other pockets of infection? I am wondering if you have another abscess. The flagyl will help any infection in the surrounding tissue and can help the fistula cool off and shrink. You may need to go on IV antibiotics for a couple of days (stronger doses that pill form of flagyl) just to wack that infection. But nothing can help an abscess except an I&D.

If you think about what could be hurting, it is either the surrounding tissue, another abscess, or the fistula itself. The flagyl/antibiotics will help #1 and 3, but not #2. Stay ahead of the pain with meds, and if you feel worse (fever, more pain), I would not hesistate to call you doctor!

Praying it gets better for you ASAP!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/26/2009 10:45 PM (GMT -7)   
LMills is right, take your probiotics two hours after each dose of antibiotics. If should help keep you gut happier, and hopefully keep you from getting a yeast infection.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods

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