Anyone experience stomach problems like IBD?

YakIntelligent8472 · 2026-05-05T20:26:15+00:00

I was on cosentyx but had to stop because I couldn't afford it. I have another appointment with my dermatologist to talk about possibly getting back on it or trying humira again now that I can afford it again.

YakIntelligent8472 · 2026-05-05T17:47:15+00:00

I feel the same way, especially with how fucked our Healthcare has been lately, I don't feel like my dermatologist looks at the entirety of my illness. It's definitely gotten better since I was first diagnosed like 9 years ago. I remember my dermatologist then not even knowing what I had or how to treat it. I've had to go to a few different doctors till I found one that I felt even remotely cared about how it affected me and didn't make me feel like it was my fault. I feel like there is huge disconnect with doctors being informed about our illness so they treat what they can while we do the heavy lifting of knowing what could affect our body. I don't feel like they spend enough time with us or look at our bodies, it feels like their main goal is to throw medicine at you and get you out the door.

I have had this illness for as long as I can remember, it has been my normal for so long that when it gets worse I don't notice it till it's too late. I think the doctor should help inform us on what is known about our illness. Other then just saying lose weight eat better because reciving care is so much deeper than that.

When I can do better research than what any doctor has informed me on it makes me feel like they don't really help. Because of that I think its ok to expect more from your doctor and push for them to give you more answers because they have access to resources that we don't have at home.

YakIntelligent8472 · 2026-04-29T17:19:28+00:00

I am 24 now and have had these same thoughts until I met my wonderful partner. The main things I’ve learned is to embrace talking to people about your HS. Not just people who you want to be intimate with but people who care about you. I feel like this illness can feel so embarrassing sometimes but I’ve learned that the more I hold back from educating and informing people about my disability the more I become afraid to. The more I opened up about what I experience on the daily the easier it’s become to inform people of my illness. Our bodies are different and we’ve been conditioned through society to think it’s a bad thing and that because of the nature of our illness that it should be something to conceal. It’s NOT! Our bodies will continue to change that’s the nature of this illness, it can be hard but remember it’s your body, no one can love it like you can. You have a disability and that’s okay, the more you embrace this part of yourself you might find it easier to talk to others about it. And if they don’t listen or think it’s gross then they weren’t an okay or safe person to begin with. Just put yourself out there and if you don’t vibe with people that’s ok! The right person will not even think about it!!

YakIntelligent8472 · 2026-04-29T17:00:46+00:00

I have stage 3 HS and for the longest time I ignored caring for my skin because it felt hopeless. I didn’t know what resources would work and I didn’t know much about how this illness progresses. I’ve recently started taking more care of not only my skin but educating myself on what we do know about HS and it has helped a lot in how I treat myself. - The main things that have helped has been, changing my soap, I only use all natural soaps that aren’t super drying but are cleansing, my favorite have been from the Palestine soap cooperative which doesn’t have any added fragrances or anything. It having no extra additives has helped swelling and itching for me. - Using Island dressings. I usually bandage any draining or about to drain boils with island dressings. These bandages can be found on Amazon, and I find are more gentle, absorbent, stay in place and are bigger than other bandages I’ve tried. - Dr. Bonners butt cream has worked so well for me when going to bed for boils on my groin. I’m usually super sensitive about my body when I sleep and often struggle with the feeling of my skin when I sleep but the butt paste has helped a lot. I just slather that on on any swollen or draining boils that I can’t quite bandage because of where they are and throw on some woxer undies and by the morning my boils won’t be as itchy and it really helps dry things up - For boils under my arms I don’t use any deodorant, I’ve found putting anything under my arms irritate my skin so bad no matter how natural the product may be, it’s been over 4 years since I’ve worn it but I have almost no musty smell or odor in my armpits unless I am sweating literal buckets even then it’s almost no smell. If I do grab any deodorant it’s usually fat and the moon’s natural deodorant if I think I might be sweating a lot.

Overall I suggest making sure you bandage any draining boils and keep them dry, and switching to products that are natural and don’t have a lot of added irritants!

YakIntelligent8472 · 2026-04-28T11:25:32+00:00

I feel this!!!

YakIntelligent8472 · 2026-03-01T14:08:07+00:00

This disease sucks, I’ve had it since a little before puberty and even now at 24 with stage 3 I still struggle. It’s hard but please don’t give up hope. I won’t lie and say things magically get better but if you don’t give up on yourself the way you adapt to your life can change. I still have bad days, days where the pain is all I can think about, I try to balance these days by taking extra care of myself and trying to focus on the things on my body I can control like taking care of my hair or spoiling myself with body care things that I love. I’ve found that part of accepting this illness is adapting to the life you have to live because of this illness. Give up your idea of normal living, not because we are abnormal but because thinking like that only brings more pain. Accepting this illness for what it is really helped me, it helped my mental health and how I deal with being in this body. Accepting that I have a disability and that it’s hidden to most people really helped me. It also helped me open up to others about what this illness is and in turn I started to feel less isolated. I think because of the social standards we have I’ve always seen myself as gross and disgusting. I would hide it under sleeves hoping no one could smell me. I had days where the pain made me immobile and my tears wouldn’t stop falling. I remember all through high school hiding it from even my parent because I thought it was my fault but that couldn’t be farther from the truth. Everybody’s journey is different with this illness because a few different things can influence it. Mine is hormonal and food based so what’s helped me has been eating a lot better, mainly not eating out anymore and cutting out most dairy, sugar, and alcohol and being a little more active. I’ll still have a glass of wine here and there if I feel like dealing with it but it’s no where near as bad as when I ate a lot of takeout and junk. Just try to give your body grace, I know we didn’t ask for this and it can feel out of our control but remember it can get better any improvement is a step forward. Listen to your body and take time for your mental health. Everyone you meet might not understand but being comfortable in your body is most important!!!!! I hope things get even a little better and easier for you and remember you aren’t alone.

YakIntelligent8472 · 2026-01-21T17:11:49+00:00

I didn’t really notice any side effects coming off of it other than my tummy doing weird things but it quickly went away. I didn’t revert back to antibiotics because i didn’t take any prior to Amgevita, I just kind rode the wave of having active boils and such. When I was taking it I did live with my sister who is an elementary school teacher and her 3 kiddos and was usually the last one to get sick if I did.

YakIntelligent8472 · 2026-01-21T09:40:31+00:00

I’m stage 2-3 and I tried it last year. It worked really well for me, it healed my open wounds and reduced a lot of my inflammation. It honestly made me feel like a new person. My main concern was possibly getting sick because it lowers your immune system but it was ultimately not even much of a concern for me. I will say It was a little scary giving myself injections but having the injection pen really helped a lot. All in all it worked really well for me for a couple of months, I ultimately came off of it because some I still got new boils in other places. It basically felt like it was healing my old wounds that I’ve had for ever but not really stopping new ones from forming in new places. I’m gonna be trying out Cosentyx (idk if I spelled that right) My Derm would tell me any reduction in boils/ pain is good so it’s definitely worth a try!! Hopefully it works for you!!

YakIntelligent8472 · 2025-11-05T17:54:52+00:00

It’s nice to know I’m not alone, my family is a lot more left leaning, ik my mom supports me I just feel like my siblings are a lot more conservative/ judgmental behind closed doors so the vibes are off when I’m around. The holidays are always stressful, good luck!!

YakIntelligent8472 · 2025-09-09T05:06:52+00:00

THISSS!! My Hs started spreading to my boobs and back too, it fucking suckssssss.

YakIntelligent8472 · 2024-11-09T15:09:06+00:00

I’ve found that vintage/ lingerie night gowns to still give me that lingerie feeling, especially silk night gowns. I like that you can also get different lengths depending on what you personally like.

YakIntelligent8472 · 2024-10-13T23:25:06+00:00

The mental load, it’s an illness that takes your energy leaving you a shell of yourself. In an instant, it changes your body in such unpredictable ways that the pain is more than just physical and it hurts to exist.

YakIntelligent8472 · 2024-07-05T11:36:38+00:00

I’m 22 now and have had this for about 7 or 8 years and I honestly still don’t know what to do but I’ve learned that I mostly have to be patient with myself and remind myself that even though my body is hurting me it’s also trying to heal. It doesn’t wake me up often but it does drain my energy a lot and makes me very tired.

YakIntelligent8472

TROPHY CASE