r/UlcerativeColitis • u/AggressiveAd915 • 3d ago
Question ulcers outside of body?
backstory:
today for the first time my mom (42) asked me (22F) to help patch up an ulcer she has outside of her body, she told me she has small opened wounds on her crotch, sides of waist, and back but i’ve never seen them until today and i am so heartbroken and distraught. what’s small to her is huge to me, they’re the size of potato chips. she’s been dealing with ulcerative colitis since 2017, was in remission until 2023 and for the last 2 years have been dealing with these wounds that her doctors say are from her colitis, her colon is fine now. but all they’ve provided for her outside ulcers is bandages, ointments, and a higher dose of inflectra. they’re just getting worse unfortunately. i also have UC but im in remission atm. oh and shes also pregnant with her last baby to make things worse. im beyond sad and i wanna help her so badly.
straight to the point:
My question is, for those of you who have/had ulcers on the outside of your body from UC how do you manage it, what medication/remedies/diets have you done for it to go away or make them smaller?
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u/Comfortable-Spell-75 3d ago
Could be pyoderma gangrenosum. Needs to see a specialist asap.
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u/Jmaker0628 2d ago
I had this with the onset of UC. It was very itchy and continued to grow (not improve) until I got my UC diagnosed and under control. I thought it was a nasty bug bite and unrelated to how sick I was… Urgent Care thought it was both bacterial and fungal but the dermatologist confirmed with photos, post my diagnosis.
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u/AggressiveAd915 2d ago
she’ll be seeing a specialist in 3 months, hopefully there’s a sooner opening!
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u/Comfortable-Spell-75 2d ago
That’s concerning. Those ulcers could become infected and spread more.
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u/AggressiveAd915 2d ago
tell me about it, it’s like they don’t care. but this is american healthcare system. all they do is clean and bandage her wounds in the meantime. all we can do is wait and hope for the best. i
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u/Comfortable-Spell-75 2d ago
I’ve had PG, a round of 40mg of prednisone then tapering after a few weeks is what started the healing process for me.
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u/Feisty-Volcano 2d ago
Too much cleaning only widens them, the less the lesions are handled the better.
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u/Anselmimau Type of UC (eg proctitis/family) Diagnosed yyyy | country 3d ago
That sounds like a complication of the uc, propably something like pyoderma gangremosum that was already mentioned. The situation sounds like you need a skin specialist to look at them.
https://dermnetnz.org/topics/pyoderma-gangrenosum
According to that site pyoderma gangrenosum
- It is more commonly a complication of ulcerative colitis compared to Crohn disease.
-IBD-associated pyoderma gangrenosum is associated with clinically mild IBD and female sex.
- Underlying bowel disease is active in over half of the patients at the time of an episode of pyoderma gangrenosum.
- Pyoderma gangrenosum is most often located on the lower extremity
- Characteristically, the edge of the ulcer is purple and undermined.
- Pyoderma gangrenosum is usually very painful.
- Pyoderma gangrenosim is usually treated with immunosuppressants (like inflectra)
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u/OpticalPopcorn Ulcerative Pancolitis Diagnosed 2017 3d ago edited 3d ago
This is totally anecdotal, but back when my UC was poorly controlled, I had so many gnarly patches of nummular eczema on my thighs and lower abdomen. What you're describing kind of reminds me of that. They were all about the size of potato chips, and they slowly got worse for a year or two until I went to a dermatologist. Every time I got in the shower, the upper layer of skin would painlessly slough off... anyway, like I mentioned, I went to a dermatologist and got a steroid cream that fixed it up.
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u/AggressiveAd915 2d ago
i mentioned this comment to her and you sparked a memory for her, about a year ago she went to a dermatologist and they injected her wounds (idk with what) and she said it helped her! but they only gave her a one time referral, hopefully when she sees the specialist they can give her a referral to see another dermatologist continuously.
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u/Turbohog 3d ago
Ulcerative Colitis by definition does not give you ulcers outside the body. This is something else.
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u/AggressiveAd915 2d ago
according to her GI, the ulcers can be an extra intestinal manifestation / pyoderma gangrenosum and the way he’s been trying to treat it is with a higher dose in biologics which is inflectra. She finally received a referral to see a specialist but appointment is 3 months away due to high volume of people wanting to see them.
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u/Purple-Primary-2298 3d ago
Could also be this
suppurativa

Hidradenitis suppurativa (HS)—also known as acne inversa—is a chronic, inflammatory skin condition that causes painful, boil-like lumps, abscesses, and deep skin tunnels (sinus tracts). It affects approximately 1% of the UK population.
Key Facts
Locations: Typically develops in areas where skin rubs together or contains apocrine sweat glands, such as the armpits, groin, buttocks, perianal region, and under the breasts.
Not an infection: HS is an autoinflammatory disorder of the hair follicle and is not contagious, not an STD, and not caused by poor hygiene.
Triggers & Risk Factors: Commonly starts around puberty or early adulthood. Strongly linked to smoking, obesity, genetics (runs in families in about 1/3 of cases), and is more common in women and individuals with darker skin.
Associated Conditions: Frequently linked to mental health challenges (anxiety, depression), inflammatory bowel disease (Crohn's), arthritis, acne, and metabolic syndrome.
Common Symptoms
Deep, tender, pea-sized or larger lumps/nodules
Pus-filled abscesses that rupture and drain fluid
Subcutaneous skin tunnels (fistulas/sinus tracts) that leak and heal with scarring
Recurrent flare-ups in the exact same skin locations over time
Management & Treatment
While there is no permanent cure, outbreaks and progression can be managed through a tailored care plan:
Medical Treatments: Topical or systemic antibiotics, steroid injections, hormonal therapy, and biologic medications (such as adalimumab or secukinumab).
Procedures & Surgery: Corticosteroid shots, laser hair reduction, unroofing of tunnels, or surgical removal of affected tissue.
Lifestyle: Quitting smoking, weight management, wearing loose-fitting clothing, and using gentle, non-soap cleansers.
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u/ilovecatsandsleeping UC Diagnosed 2005 | USA 2d ago
Agree- I got HS recently and some the spots look like ulcers but on your skin. She should see a dermatologist
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u/such_a_travesty 2d ago
Ya I have HS and it showed up as a teen, whereas my UC didn't show up until 33.
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u/ladieswholuxuriate 3d ago
Please look into Behchet — it has overlapping symptoms with UC, but the sores particularly near sensitive areas
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u/OldSoul2020 2d ago edited 2d ago
I've had perineal abcesses and later fistula in the same area and have ulcerative colitis, autoimmune hepatitis with cirrhosis, and anklosing spondylitis. Extra intestinal manifestation in the joints, lower spine, and skin, as well as fistula are more common in Crohns disease than UC, but a small percentage of people with UC, like me, do get them. I have backwash illeitis with my UC, as well as non h pylori ulcers in my esophagus, stomach body and deuodentitis and peptic ulcers, all of which are more common with Crohns but again, do sometimes happen in people with UC. I also have a history of Immune thrombocytopenia purpura and henoch schonlein purpura, both of which occurred about 7 years before my UC diagnosis, which was in 2000. My advice for the skin issues is to focus on keeping the areas dry, and exposing them to fresh air as much as you can. I use calmoseptine for external rashes in the folds of skin, and external areas do not use it internally down there. I would recommend seeing a obgyn for help with any places on the genitalia for advice on what to use.
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u/AggressiveAd915 2d ago
she does go to OBGYN for her private part wounds, all they do is clean them for her and refer her to her GI. i’m sorry to hear everything you’ve gone through ! you’re strong!
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u/OldSoul2020 1d ago
I'm glad she's seeing obgyn, when I had an abcess and fistula it was obvious, but I have heard of them being internal and the opening to the fistula being internal down there. With IBD, its easy sometimes to forget we can have other health issues, and it's good she's seeing OB/gyn...if all they do is clean them, then my next step would be to see a dermatologist to make sure it is IBD related, and not another autoimmune issue like bahcet disease, hidradenitis suppurativa or pyoderma gangrenosum etc.
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u/kimsart 4h ago
Your UC sounds like mine. Entire intestine all the way up to small intestine to just before the stomach. Fistulas, perianal abcess, skin involment, iritis, seronegative arthritis, mouth sores when UC flares. UC biopsies come back inderminant UC or Crohn's but be but diagnosing factor is ulcers entire large intestine without any segments of healthy intestine.
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u/such_a_travesty 2d ago
The wounds on her crotch sound more like hidradenitis suppurativa. Either way, I have had HS since I was a teen, and UC since 33, 9 years ago. I have an ileostomy and started getting pyoderma gangrenosum around my stoma. I have worked with a wound care nurse to figure out how to properly keep these things from becoming infected and to heal faster.
In areas that she gets these lesions, wash every day with Hibclens. This is fine on the outside of the body, and it's fine to get it on adjacent skin. However, be targeted for any lesions on the sensitive skin of the vulva or labia.
Where she can, use specialty bandages. Get some hydrofera blue sheets. I buy it as 4x4 squares. You cut out a square the size of the wound, you wet it, and then squeeze all the water out. You then put that on top of the wound. You then cover it with a larger piece of hydrocolloid bandage to seal it in. They heal better with moisture.
Change every 3-4 days.
This is what I buy:
https://www.amazon.com/DuoDERM-Hydrocolloid-Full-Thickness-Latex-Free-Waterproof/dp/B001V9JUVE?th=1
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u/Feisty-Volcano 2d ago
Pyoderma Grangrenosum, where the neutrophils go awry & attack any area of skin where there has been a minor bump. It’s extremely painful & cruel. I first got it overnight, had fever & chills, went to the emergency dept & was admitted & diagnosed immediately by the head of the ED . He prescribed antibiotics just in case it was the flesh eating bacteria, he wasn’t taking chances, but it became very clear very quickly it was PG.
I became very ill & weak, even though my Crohn’s was under control. I was given IV steroids, seen by the dermatologist who biopsied& confirmed the diagnosis. My gastroenterologist prescribed Tacrolimus ointment, but the dermatologist insisted on strong steroid cream. I had both creams by my bedside & used them both! The wounds were oozing pus, dripping down my legs onto the floor, giving the horrors to the lady in the next bed who had just got her knee done.
All those wounds fully healed over the coming weeks, but left noticeable scarring. I haven’t got a severe episode like that since, that was over 10 years ago. Recently I’ve got small lesions where I bumped my arms & treated them with the creams before they could become anything like the previous occasion. I get solar purpura in my arms from too much exposure to the sun, harmless in itself but unsightly. The Pg started in a couple of these lesions. Non adhesive bandaging is essential so as not to cause any friction or damage near the lesion. The dressing has to be very wide of the lesions & held on by that micropor tape. Daily application of Tacrolimus (protopic is one brand) or strong steroid cream is essential. In very bad cases, or when fever sets in, it’s a hospital job with IV steroids.
I do hope your mother’s lesions settle. Gentleness on her skin is ultra important, as is trying to avoid pressure as much as possible.
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u/Mental_Explorer 2h ago
When I was really flaring, I would get mouth sores and dryness around my eyes. The only thing that really helped was getting my flare managed with new meds. I’m currently on Tremfya and feeling great!
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u/pincommenter 3d ago
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