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Crohn's Disease Forum » Extra Intestinal Manifestations » Skin » Hidradenitis Suppurative linked to Crohn's Disease


06-16-2015, 05:01 PM   #1
InstantCoffee
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Hidradenitis Suppurative linked to Crohn's Disease

http://www.ncbi.nlm.nih.gov/pubmed/20976417

http://www.sciencedirect.com/science...10836X12000164 See section 11

How come I saw so many specialists dealing in crohn's and dermatologists and not 1 ever recognized or suggested it?

My first Crohn's doctor at the children's hospital sent me to two dermas, I saw 2 ER doctors (one for one on my private bits in highschool, one for armpit nodes after college), a walk-in doctor (arm pit nodes, went to ER after he scared me off), and 3 different colorectal surgeons, then the two GI doctors I had after I left the children's clinic post college.

I've had probably 10 done on my butt, 3-4 on my groin, one on my bits, 4-5 self treated on my face, 2 in my arm pitts I self treated with dietary changes after antibiotics failed.

I don't have an official diagnosis but at this point I hardly need it.
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07-19-2015, 12:16 PM   #2
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This is exactly how I was too, I went to so many dermas. Dedicated time at the primary care physician, the GI, and of course a surgeon. I've had a ton of these guys on my butt, my groin, my armpits, my back, and my neck. I actually had a few behind my ears.

I eventually became so sick of it, I just bought some lancing tools, and just started lancing them myself when need be. I have scars, I have ones that lie dormant under the skin. It's brutal.

But I feel your pain brother.
07-26-2015, 10:47 AM   #3
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May be too early to say but I'm seeing improvement, I just threw a shotgun approach and here's the things I'm currently doing:

-High dose L-Lysine (3000mg a day)
-Colloidal silver and ginkgo biloba extract orally
-colloidal silver and ginkgo biloba extract topically with DMSO to pull it into the skin
07-27-2015, 06:34 PM   #4
Lady Organic
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there is this so interesting medical show I watch and recorded most episodes. Its called the Food Hospital.

Icant play the video, but maybe you can : http://www.channel4.com/programmes/t...mand/54035-005

A GP a surgeon and a nutritionnist host show. They had a case of Hidradenitis in the episode above in the link:

http://www.channel4.com/info/press/p...pital-series-2

''Human rights Lawyer Gozen, 25 from Enfield has a condition so embarrassing she spends hours trying to conceal it. She suffers from Hidradenitis Suppurativa, a chronic inflammatory skin disease, which affects at least 1 in 100 people in the UK. The unsightly symptoms include cysts and abscesses in the armpit, groin, chest and back areas which exude discharge. People are often too embarrassed to seek help which is one reason why extensive research into the condition is lacking. GP Gio Miletto advises Gozen to go on a low GI diet which has been used to relieve acne, which is said to have some similarities.''

so a low glycemic index diet to avoid increases of insuline was attempted and her situation greatly improved. so looking for food with very low glycemic index could be interesting.

they had another episode with acne and they explained how insuline stimulate the production of androgen hormones, which play part in acne.
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07-28-2015, 04:27 PM   #5
InstantCoffee
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I guess that makes sense, the diet it got better with would have been low GI. I'm gonna try replacing honey / sweeteners in my diet with stevia.
07-28-2015, 06:02 PM   #6
Lady Organic
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it is worth checking the lists of fruits as well. some have very high GI like dattes, bananas, pineapple... refined grains too or grains in general I believe.
07-29-2015, 07:35 AM   #7
InstantCoffee
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it is worth checking the lists of fruits as well. some have very high GI like dattes, bananas, pineapple... refined grains too or grains in general I believe.
The only fruit I eat in large amounts is strawberries and they have a fairly low GL.

Looks like i'm gonna be running my nutritiondata tracker again.

Idk what I'm gonna do for carbs, my only real source is oats and they're pretty high. 2 cups is already putting me over the 100 recommended daily GL.

Breakfast + Lunch

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