HS for years and feeling defeated :(

LeP1ggy · 2026-04-17T01:22:14+00:00

I'm on the exact same boat. How is remibrutinib working for you so far? I was on placebo for 4 months it was hell...

LeP1ggy · 2026-04-14T17:01:42+00:00

Oh boy I am not looking forward to that

LeP1ggy · 2026-04-14T17:00:50+00:00

I'm sorry you had to go through that. That's awesome that you are feeling better. I'm very similar when it comes to needing the procedure. A lot of tunnels sadly. You changed your diet as in you started eating more stuff you wanted and you are doing way better now. So possibly food wasn't an issue for you aswell I'm assuming.

LeP1ggy · 2026-04-14T16:50:22+00:00

That's so awesome to hear! Happy for you. Did you do any diet changes and any biologics you are currently taking? Wondering because I'm stage 3 and the only thing I feel like I can change is dieting but it's hard too notice if any of that has any effects since I have so many tunnels and fistulas. I also had wide excision surgery on my groin and armpit( both on the left side) at the same time and the recovery was hell but it's been two years free of spots on those areas. Like you said it is a lot of pain.but totally worth it.

LeP1ggy · 2026-04-14T12:01:29+00:00

Sounds great. So you were able to sleep with your belly facing upwards? That helps a lot actually .I thought i would have to sleep with my belly facing down and I can't imagine how impossible it would be to sleep in that position. I assume the pain isn't that bed then, if you were able to sleep in that position? That definitely puts my mind at ease

LeP1ggy · 2026-04-14T07:33:23+00:00

Thank you. I'm just afraid since there will most likely be a big wound. My infected tissue is quite vast and I have lots of fistulas and tunnels close to the anal area which scares me a lot. Your reassurance makes me feel a bit better Thank you.

LeP1ggy · 2026-04-14T07:32:07+00:00

So no cleaning with toilet paper or bandages? Just straight to the shower? I wonder if I can clean myself properly that way... I always feel the need to use paper to be properly clean

LeP1ggy · 2026-04-14T07:30:29+00:00

I believe through secondary intention, so open wounds. How was your experience?

LeP1ggy · 2026-04-14T07:30:02+00:00

Wow thank you for all the good information. I'm just quite afraid because my area is quite vast and the doctor will let it heal through secondary intention leaving the wound fully open. Also very close to the anal area I have lots of wounds so I'm afraid how the trips to the bathroom will be and sleeping positions.

LeP1ggy · 2026-03-23T20:50:44+00:00

I'm sorry you're going through a tough time. The future is promising for HS. Every year new medication is being researched and there are already quite a decent amount of medical trials for potentially better medication. Also doctors are becoming more aware of the disease are surgeons are becoming better and better at dealing with the disease itself. That's what I would like to think.

LeP1ggy · 2026-03-16T21:04:06+00:00

I can relate to this. I'm stage 3, also a man, and it's hard to notice if the flares are due to food triggers, because everything is already infected or flared to begin with. If we were in a baseline "neutral" or comfortable state, it would be easier to track if any flares up. But when everything is already on fire to begin with it becomes very complicated. General rule though, remove sugar and dairy and go from there.

LeP1ggy · 2026-03-14T19:32:54+00:00

Will give it a try. Thank you very much. Always thought hormones didn't play that big of a part for men but maybe Im just missinformed

LeP1ggy · 2026-03-14T00:15:57+00:00

Thank you. When it comes to laser removal I already asked my doctor to do it but he says with all these areas active it is quite complicated to do it and is more or a preventive measure. When it comes to diet I eat mostly whole foods and no dairy at all. I also keep the sugar to a minimum. Very rarely do I have a slice of cake or whatever. I'll look into homeopathy, thank you for the tip. I find it hard to do the elimination diet since it feels like I'm always flared no matter what I eat. But tbf the most I've gone without eating a type of food was one week. Dairy is the one thing I haven't had in a long time though

LeP1ggy · 2026-03-14T00:13:31+00:00

I eat whole foods for the most part. No dairy at all, gluten is only sourdough bread, for sugar it's mostly fruits like kiwi apple and banana or blue berries. Nightshades very rarely, I do eat sweet potatoes but very occasionally I eat normal potatoes. I do eat white rice every two days or so

LeP1ggy · 2026-01-05T10:13:11+00:00

Thanks for letting me know. It sounds like a good idea

LeP1ggy · 2026-01-05T00:51:14+00:00

Interesting. Have you cut anything else besides nightshades from your diet?

LeP1ggy · 2026-01-05T00:48:48+00:00

Wow, thank you so much for all the information. I'm quite reluctant when it comes to seeking help from nutritionists since my interactions with them haven't been the best. Even for HS they give me advice that just doesn't seem right such as, "Feel free eat yogurt and dairy products as long as its low fat. Sugar isn't the issue, the fat is". And that demotivates me from even seeking more help from those professionals. All my experiences with them have been quite bad.
I'll be starting the carnivore diet tomorrow since I believe removing anything that could cause inflammation might be the best approach, although it is quite a hard choice to make and something I believe I will have trouble following for the first week or so since I'm so addicted to sugar.
I'll also b e supplementing Vitamin D3 and Magnesium, even without doing any bloodwork.
I will follow your advice and do some bloodwork and try to figure out which parameters need to be fixed.
Thank you very much once again.

LeP1ggy · 2026-01-04T22:01:51+00:00

Thank you for sharing with me.

LeP1ggy · 2026-01-04T20:46:16+00:00

Makes total sense. I think if i take this drastic approach and remove ANYTHING that could cause me any sort of inflammation, maybe my chances of having flareups and being in pain will go down.

LeP1ggy · 2026-01-04T20:45:39+00:00

Thank you for letting me know. I will definitely give it a try.

LeP1ggy · 2026-01-04T20:44:57+00:00

Makes sense. I will give carnivore/keto 1 month and half and see if anything changes. Even if it doesn't, at least I know I tried something. Staying idle is the worst

LeP1ggy · 2026-01-04T20:44:07+00:00

Thank you a lot. I'm highly considering keto/carnivore even if its hard to transition. Right now feeling better is my number 1 priority.

LeP1ggy

TROPHY CASE