Hidradenitis Suppurative linked to Crohn's Disease

[InstantCoffee]

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

http://www.sciencedirect.com/science/article/pii/S2210836X12000164 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.

 

[iamaaron]

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.

 

[InstantCoffee]

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

 

[Lady Organic]

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/the-food-hospital/on-demand/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/programme-information/the-food-hospital-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.

 

[InstantCoffee]

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.

 

[Lady Organic]

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.

 

[InstantCoffee]

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

 

[mish2575]

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

Hi Coffee,
Did this work?

Spirolactone helps mine but would prefer natural remedy.

 

[mish2575]

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/the-food-hospital/on-demand/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/programme-information/the-food-hospital-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.

This!
That is why my doctor prescribed spirolactone. It helps combat the estrogen (?) from Lorena u til I have removed

 

[InstantCoffee]

Hi Coffee,
Did this work?

Spirolactone helps mine but would prefer natural remedy.

DMSO gel helps my facial lesions in the early stages but I don't think the facial problem is the same as the HS on the lower parts.

Those went away with dietary changes, if I keep the diarrhea in check, the HS is in check it seems. Low FODMAP seems to be the direction to go.

 

[Ebru]

It seems like most auto immune diseases are related to each other. I've read that psoarias (maybe even Parkinsons') and Crohn's come from the same defect genes.

 

[InstantCoffee]

I wanted to suggest for anyone suffering from this - I had a flair of an HS-like lesion on my mid-back near the spine that would not leave.

Twice daily application of zinc oxide diaper rash cream has almost completely cleared it.

May not work on HS but worth a try.

 

[MaybeNothing]

I realize this is an old thread, but I was wondering if anyone has noticed a cycle with HS and Crohns symptoms.

I’ll be fine, then all of a sudden I have bloating, gas, abdominal pain, severe fatigue, joint pain, and heartburn that won’t go away for about two days. With or without blood and/or diarrhea, but usually accompanied by urgency.

Then, up pops an HS nodule. Although they’re painful, I almost love them, because as soon as that thing appears, GI symptoms improve.

This happens over and over and over again. For years. I’ve seen multiple doctors who acted like I was crazy. But it happens just like this EVERY time. My dermatologist is the first doctor to ever suggest Crohns.

(I have HS, GERD, and esophageal ulcers. I haven’t been diagnosed with Crohns, but my dermatologist suspects it. I have a gastroenterologist appointment this month.)

Has anyone else had cycles like this?

 

[InstantCoffee]

I realize this is an old thread, but I was wondering if anyone has noticed a cycle with HS and Crohns symptoms.

I’ll be fine, then all of a sudden I have bloating, gas, abdominal pain, severe fatigue, joint pain, and heartburn that won’t go away for about two days. With or without blood and/or diarrhea, but usually accompanied by urgency.

Then, up pops an HS nodule. Although they’re painful, I almost love them, because as soon as that thing appears, GI symptoms improve.

This happens over and over and over again. For years. I’ve seen multiple doctors who acted like I was crazy. But it happens just like this EVERY time. My dermatologist is the first doctor to ever suggest Crohns.

(I have HS, GERD, and esophageal ulcers. I haven’t been diagnosed with Crohns, but my dermatologist suspects it. I have a gastroenterologist appointment this month.)

Has anyone else had cycles like this?

My HS was connected to crohn's severity but not subsiding, it went away when I changed my diet (reduced sugar and dairy intake)

 

[MaybeNothing]

My HS was connected to crohn's severity but not subsiding, it went away when I changed my diet (reduced sugar and dairy intake)

Thank you! I’ve just started trying to go dairy-free, but I hadn’t even considered sugar. I’ll try cutting back on it and see if that helps.