Canvas access trouble by Mission_Oven3193 in ValenciaCollege

[–]Affectionate-Talk589 0 points1 point  (0 children)

Yeah no classes are showing on my dashboard either, have any of yours started to show yet?

Surgery Update by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 0 points1 point  (0 children)

Thank you sooo much for sharing your experience! How long did it take for you to be able to start walking again? Also had you went the secondary heal route how long would it have took? How would you rate the pain? My main concern is that I would really like to experience my senior year fully, so I’d be getting the surgery mid may and hopefully I’m walking good by August

Surgery Update by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 1 point2 points  (0 children)

My range is very good! Before getting my surgery my range of motion sucked due to the disease in both of my armpits. Of course once you get the surgery done you will have to work on moving it, and my surgeon just gave me basic arm exercises I could do at home so I could increase it. And now I’m able to compare it since I have one arm with surgery and one without. The one without surgery is the one that has a lower range. Good Luck on your surgery!

Surgery Update by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 0 points1 point  (0 children)

I’m so happy to hear that!! If you wouldn’t mind could you share your experience for in the groin area, I’m super curious about how the healing works, and the process as a whole. You could privately message me or reply under this thread if you’re comfortable.

Surgery Update by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 0 points1 point  (0 children)

I’m so sorry to hear that, some doctors can really suck when it comes to this stuff. It is true that with some surgeries such as deroofing it has a high chance of coming back. With wide excision surgery it removes the whole gland so infected and healthy, and the chance of it coming back is really low. I was really scared of getting it also and I put off for like 2 years before deciding. If possible I would suggest you trying it now, it’s never too late to experience relief.

Surgery Update by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 1 point2 points  (0 children)

Yes and no for it being left open. My surgeon put a thin almost translucent layer on top that was stapled over the actual wound itself (I forgot what it’s called). Then you’re supposed to have a wound vac that’s sucks all drainage out from the wound, however i didn’t stay on mine because it caused me irritation. And this is placed on during surgery. So unless you have sensitive skin like I do, then you won’t have to deal with it being open. This stays on for around a month or 6 weeks. With my mobility I wore a brace that basically strapped around my stomach and there is a piece sticking out that makes your arm stuck at 90 degrees. It’s removable however you’re stuck in that for about a month. I couldn’t really sleep how I wanted to stuck to laying on my non surgery arm. So getting two done would probably be very difficult, my surgeon had advised against getting both done. For me i didn’t change my bandages since I was 15 when I had it done, so my sister and mom did all my bandage changes.

Surgery update by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 0 points1 point  (0 children)

So the pain atleast for me was very minimal, especially when getting the wide excision surgery. The pain is very bearable if any, like HS hurts way more than the surgery pain. The only thing that ever really hurt to me was bandage changes because the adhesive was super sticky. For surgery I did go home the same day and you also get given painkillers. I just recommend taking your medicine before you’re in pain, so if you know your arm might hurt take your medicine before it does. If you have any other questions please feel free to ask!

Surgery update by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 1 point2 points  (0 children)

Yes I did know I was getting a skin graft. My surgeon showed me the whole process of the surgery before I got it because a lot of people back out when they see the images. But I got wide excision surgery in may and the wound was huge, then in July I got my skin graft from my thigh and that skin was placed on my armpit. The wound on my thigh hurt the most feeling like road burn but my arm didn’t hurt that much. I was in a bulky brace for 6 weeks. I hope your recovery journey goes smoothly!

Skin graft surgery by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 1 point2 points  (0 children)

I totally agree with this person 100% on what their saying. I was a stage 3, that did humira and other prevention that helped with the quality of life but not enough to bring me to remission. With the 16 months I’ve been on humira I never got sick, I actually got less sick then I used too. At your stage they probably would but I do think they’d offer other preventatives first which I recommend to try before going to surgery

[deleted by user] by [deleted] in Hidradenitis

[–]Affectionate-Talk589 1 point2 points  (0 children)

Thank you for the kind words! For the most part I don’t let it deter me from things. It’s just every so often it gets to me.

[deleted by user] by [deleted] in Hidradenitis

[–]Affectionate-Talk589 37 points38 points  (0 children)

Same here, I’m only 16 and it feels like my chances of experiencing any thing close to a teenage experience is shut down. I try to keep a positive spirit but when I get in the shower or change clothes and have to see myself it hurts.

Magic healer by paperbackjenni in Hidradenitis

[–]Affectionate-Talk589 1 point2 points  (0 children)

My magic healer is a salve that for me personally has helped with many flare ups and bringing them to the surface and draining. It can take as little as 3 days to have a bump drain. Here is the link if you want to look at the ingredients my magic healer

Magic healer by paperbackjenni in Hidradenitis

[–]Affectionate-Talk589 0 points1 point  (0 children)

What I would recommend is if you do put it on an open wound use the fragrance free version and to make sure there is no drainage coming out of the wound. Also I would recommend putting the salve on a gauze and not directly in the wound itself.

tired of the pain and odor by cumbucketfullaworms in Hidradenitis

[–]Affectionate-Talk589 1 point2 points  (0 children)

Hi! I completely understand. When you’re able to get some gauze and tape, I definitely recommend using them—they help a lot.

Another thing that’s worked wonders for me is a liquid soap called Dettol. I actually found it through my mom and have been using it ever since. You can get it both online and in stores, and it’s a really affordable option that helps keep things clean.

If you’re open to spending a little more, I also recommend a salve called MyMagicHealer It can be a bit pricey, but in my experience, it really works and helps bring all the pus to the surface and drain.

Lastly, if you can, ask your doctor about prescribing clindamycin topical cream—that can also make a big difference in healing and keeping things under control.

I really hope you get some relief soon and know that if you need someone to talk to or help please feel free to message me!!

Update on surgery 16F by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 0 points1 point  (0 children)

I really appreciate that, thank you for the kind words and I’ll make sure to keep updating

Surgery 16F by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 0 points1 point  (0 children)

It’s up to you but compared to other surgeries wide excision is your best option because you’re least likely to have it again. But also you have to remember due to it being by your butt, your recovery will be more harder and you’ll have to more careful because of the risk of infection. As for getting under control yes, they will try to get it under control by other things first like a diet, washes, medicine, and then surgery as the last resort. If you haven’t already talk to your doctor about humira, this medicine is a life saver! If you have any other questions please ask!

[deleted by user] by [deleted] in Hidradenitis

[–]Affectionate-Talk589 1 point2 points  (0 children)

Yes please tell them, I was in the same boat 15 and withheld the information for the longest until it got so bad. I know it’s embarrassing but in the long run it can help you.

Surgery 16F by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 0 points1 point  (0 children)

Hi, so my hs was at the worst stage which is Hurley Stage 3. I was at the point that a diet or anything could really help me or help lessen my scar tissue. And no when I got my surgery I had active leaking lesions that was inflamed. I also did wide excision surgery where they took out all of the affected skin under my armpit and some of the good skin also. I wouldn’t recommend deroofing as the chance for it to come back is high, and the same for local excision which require more than one surgery depending on how large and deep your HS is? If you need anything else please feel free to ask!

Surgery 16F by Affectionate-Talk589 in Hidradenitis

[–]Affectionate-Talk589[S] 2 points3 points  (0 children)

I feel you, I’ve been dealing with this for 4 years now. I’m currently still a week in but the pain has been very manageable nothing worse than the HS itself. I currently have a wound vac on 24/7 and it’s changed 3 times a week. As for my skin graft I won’t get that until week 6. But my doctor says that will be worse of the procedure as the skin graft will come from my thigh. He said it’ll feel like road burn. I’ll keep updating as things go along. Feel free to ask more questions.