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Crohn's Disease Forum » Extra Intestinal Manifestations » Skin » Hidradenitis Suppurativa?


 
06-30-2013, 12:32 PM   #61
JohnnyRottenAppleseed
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Join Date: Oct 2011
Location: Colorado
Against doctors orders I went off 6mp cold turkey. My family doc was
Monitoring my blood but she was the one lancing and draining my boils and packing my wounds 2-3 a week. After watching me suffer for over a year she gave me her blessing, off the record, to go off meds. Off the record. My GI was pissed. I havent been back to him since. He was just a drug pusher. Sad he is one of the top GI in his field in the US. Total Big Pharma drug dealer. I'm convinced Merk or whomever pimps humira is building him a huge retirement villa somewhere tropical. I feel amazing today. Normal bowel movements , no more boils. I only flare about once a year and knock the flare dead with cipro/flagyl. I take probiotics and S Boulardii and get adequate Vit D. Magnesium. Zinc and eat organic and avoid GMOs.
06-30-2013, 12:43 PM   #62
slb815
 
Join Date: Jun 2013
Location: West Virginia
Thanks for your story. My doc sounds like yours... Last time I went to him with complaints about bloating and pain in upper right quadrant he did an endoscopy and gave me Prevacid, telling me to consider Remicade or Cimzia. I refused the new meds and only tried the Prevacid for about a week or two. My pain continued until I started a low carb diet.. Pain subsided within a week. I've since went back to normal diet and pain occasionally returns. I was convinced it was my gallbladder and still think it is.

Nonetheless, I'm considering trying the Paleo diet or cutting out gluten. I'm in the beginning stages of researching how I can alter my diet to eliminate the need for medication. I also worry about the long term effects of 6mp.
08-29-2013, 01:28 PM   #63
Nutlug88
 
Join Date: Aug 2013
Location: Redding, California
Hey guys I have been Diagnosed with HS as well as my wife ( she has had it for 15 years ) I have been trying to get a diag for crohns but have been having problems. Those of you in California contact Dr. Daniel Eisien at UC.Davis There is no cure but he is the fore most expert on HS in California. Lancing the lesion causes more scaring and more lesions try a cortizone injection in each lesion it helps. Here is a paper Dr.Eisien just wrote on current treatments that you should print out and bring to your derms cosderm.com/fileadmin/qhi_archive/ArticlePDF/CD/024050226.pdf
08-29-2013, 01:34 PM   #64
mish2575
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Join Date: May 2013

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Thank you. Yhd only time I've gotten the shots were when they were already too big to stand the pain. Less than 12 hours after a shot they always burst on their own.
03-10-2014, 02:34 PM   #65
mish2575
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Join Date: May 2013

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This is what works for me:

1.) hibiclens-shower at least twice a day using this in the area each time
I found Hiiclens works well, just be careful. . . I've also figured out that it caused me to have UTI symptoms.

It took me a long time to figure out what the heck was going on.
12-26-2014, 10:15 PM   #66
crohnsconfused
 
Join Date: Dec 2014
I've had HS since i was 14 years old on both sides of my groin. I have tried topical and oral antibiotics and nothing seems to help it. I have many sinus tracts and intense purple scarring. At age 18 I started experiencing GI symptoms and later developed an anal fistula. Has anyone had a Crohn's diagnosis like this after years of having HS?
02-26-2015, 02:12 PM   #67
Patticakes
 
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Join Date: Feb 2015
Location: Weston, Vermont
My son has been suffering from HS for 10+ years. He is classed stage III. He has taken, Accutane, Flagly, Doxicycline, prednisone, turmeric, low sugar diet.

He has had surgery to remove both armpits, by slicing his back and moving his skin forward to create armpits. His 1st surgery he De-hissed; two weeks after surgery. His seams re opened when they started to remove his staples. He ended up with a post surgical infection and a wound vac. His 2nd surgery his surgeon did not allow enough room for swelling and he had to undergo a surgical cut down without anesthesia 4 hour after surgery because of compartment syndrome. He spent 12 days in the hospital trying to save the flap, but eventually lost it and spent 6 weeks on a wound vac. He was just diagnosed with UC. His Dr is recommending Remicade.

I used to be in the business years ago, I was a buyer: pharmaceutical, chemical and botanical, for a company with 12 production lines and 5 research laboratories. I question every medication. My apologies is this upsets anyone, but if they do not know what causes UC and they do not know how to cure it, then why treat it with a drug that is systemic, not pin point. Why risk other organs?

30 years ago I watch my father being treated with tons of medications, diet etc, for a bleeding ulcer, only to find out years later is was h pylori and treatable with a antibiotic. He died of damage to his kidneys. My sister took a medication for weight loss which later was taken off the market; she died of heart failure due to that drug. My son was on Accutane, we now know it may lead to UC, we are in a lawsuit with the parent company. Drug companies are out to sell merchandise and if that merchandise has complications all the better, then they can sell you a second product to fix it. I feel like they have lost their way. Yes, there are medication that works, yes if you get a great doctor who can work through the BS you can get to that medication.
You can see what "incentives" your Dr is getting from the drug companies here..... https://openpaymentsdata.cms.gov/

I am so confused, I want what is best for my son, but I am afraid of what remicade might do to his body down the road. What experience have other had with a UC treatment that worked or at least helped with the symptoms?
__________________
Mom/Son 25
DX 2004 hidradenitis suppurativa III
DX 2015 UC
Meds: Prednisone 20mgs,daily
Fodmap Diet, VSL#3
6000IU vit D Daily
B complex Daily

Last edited by Patticakes; 02-26-2015 at 02:30 PM.
06-25-2015, 09:58 AM   #68
InstantCoffee
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Join Date: Dec 2012
Location: Connecticut

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My son has been suffering from HS for 10+ years. He is classed stage III. He has taken, Accutane, Flagly, Doxicycline, prednisone, turmeric, low sugar diet.

He has had surgery to remove both armpits, by slicing his back and moving his skin forward to create armpits. His 1st surgery he De-hissed; two weeks after surgery. His seams re opened when they started to remove his staples. He ended up with a post surgical infection and a wound vac. His 2nd surgery his surgeon did not allow enough room for swelling and he had to undergo a surgical cut down without anesthesia 4 hour after surgery because of compartment syndrome. He spent 12 days in the hospital trying to save the flap, but eventually lost it and spent 6 weeks on a wound vac. He was just diagnosed with UC. His Dr is recommending Remicade.

I used to be in the business years ago, I was a buyer: pharmaceutical, chemical and botanical, for a company with 12 production lines and 5 research laboratories. I question every medication. My apologies is this upsets anyone, but if they do not know what causes UC and they do not know how to cure it, then why treat it with a drug that is systemic, not pin point. Why risk other organs?

30 years ago I watch my father being treated with tons of medications, diet etc, for a bleeding ulcer, only to find out years later is was h pylori and treatable with a antibiotic. He died of damage to his kidneys. My sister took a medication for weight loss which later was taken off the market; she died of heart failure due to that drug. My son was on Accutane, we now know it may lead to UC, we are in a lawsuit with the parent company. Drug companies are out to sell merchandise and if that merchandise has complications all the better, then they can sell you a second product to fix it. I feel like they have lost their way. Yes, there are medication that works, yes if you get a great doctor who can work through the BS you can get to that medication.
You can see what "incentives" your Dr is getting from the drug companies here..... https://openpaymentsdata.cms.gov/

I am so confused, I want what is best for my son, but I am afraid of what remicade might do to his body down the road. What experience have other had with a UC treatment that worked or at least helped with the symptoms?
Accutane is linked to Crohn's (I didn't know about colitis but it wouldn't surprise me) however Crohn's is also linked to HS, one often comes before the other.

HS is believed to be an inflammatory condition similar to Crohn's and Remicade / Humira should be effective at prevention symptoms of both diseases.

The link would further suggest that Crohn's / Colitis are bacterial or viral conditions considering that HS is reported to respond to treatment with zinc and magnesium as well as restricted carbohydrate diets.

If so the bacterias that cause Crohn's are likely the same, and our leading culprits in Crohn's are AIEC and MAP.

http://www.ncbi.nlm.nih.gov/pubmed/25994082


Treatment with Remicade and other biologics may be able to suppress activity of MAP according to some studies.
__________________
Dx 05
Past drugs: Remicade, Azathioprine, Prednizone, antacids, Humira
Current therapy: Diet and supplements.
I'm my own guinea pig.
My log with studies, journal of my experiments:
http://www.crohnsforum.com/showthread.php?t=72046
My Blog
https://beyondtheoddsfitness.wordpress.com/
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