My granddaughter 21 yr old apparently has this and has had to drop out of college due to the severity of this condition.
She has been treated with multiple drugs with no results. She was referred to the plastics department at Oklahoma City University and they have declined to see her in consult and did not offer any suggestions. I have been a Certified Wound, Ostomy, and Continence nurse for 16 years and an RN for 48 years.I have taken care of patients with this in the peri-anal area that have had surgery with a temporary colostomy and skin graft with success. She has just about reached her limit as to how much more she can tolerate. She is very bright and as a freshman was in classes with seniors and doing very well in college. I have not actually seen the area, but I suspect I know how bad it is. She is willing to do what is necessary and knows that it will be extreme surgery, but she needs help. She has good insurance and the ability to pay what is not covered. She has been to 5 doctors and had a biopsy and no other condition was identified. Is there someone who specializes in this type of surgery?
I know surgery is not always the cure all, but apparently may need to be considered for her. Thanks
I am sorry to know about your daughter’s problem of Hydra- adenitis suppurativa. It would be good to know the observations & examination findings of the doctors she has been to and also her biopsy report in order to help you better.
In general perianal hydradenitis suppurativa typically runs a progressive and relentless course which is associated with acute exacerbations and remissions that lead to sinus tract formation and marked scarring. It presents with fissure, fistula and discharging pus.
In my opinion, extensive surgery can be done if the patient is expected to get even some amount of relief or improvement in quality of life. That means clinically the surgeon notices recurrent abscess formation and formation of sinus tracts as he follows up with the person. The extent of the fistula determines what kind of surgery needs to be done.
With the details that you have provided I think she has Stage 3 disease. Surgery in such cases should typically involve wide excision of the area with no primary closure. Grafts can help in process of healing. Following the procedure, the patient should have a thorough follow up with the surgeon once every 3 months or as advised.
Generally Colorectal Surgeons and plastic surgeons in tertiary hospitals operate such kind of problems.
Hope that this information helps and hope that you will get better soon.
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