Oliver William’s Hidradenitis suppurativa (HS) Patient Story

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Hello my name is Oliver Williams and this is my story of my battle with HS. I was diagnosed with HS in August of 2015. I first started noticing abscesses on my upper buttocks in July of 2014. I was under the assumption that they were just boils but i have come to find out they were much more than what i originally thought. In September of 2014 I had 3 sites on my inner thigh the size of large gumballs i went to the hospital and they lanced all 3 sites. Their diagnosis at that time was that i was suffering from cellulites and I was prescribed some antibiotics and was sent home with packing in my thighs and no instructions of follow up treatment. At that time in my life I was doing lawn care work and did not know the determent I was doing to my body by continuing the work I was doing.

In the following months I went to the hospital emergency room several times for the same reoccurring abscesses with the same treatment every time they would do a culture and prescribe me antibiotics. My struggle with the abscesses grew more prolific over the next seven months with more and more sites developing in new and worsening areas of my buttocks and groin.

Finally in July of 2015 I went to the hospital and at first the medical staff said I had cellulites and then they called in the infectious disease doctor and she stated that I might have a venereal disease and proceeded with that course of treatment. I was started on a course of antibiotics for a sexually transmitted disease for which I did not have and was told to come back if my symptoms get worse. A few days later I returned to the hospital because my conditions had not improved and the staff took concern with the golf sized abscess that I had on the top of my thigh in the pelvic area and said that it need to be lanced under anesthesia and this was the start of my trips in and out of the hospital. I remained in the hospital for five days and was given vanco intravenously. After my surgery the surgeon suggested that I get a colostomy in order for my abscesses to heal in the area of my buttocks and perineal I was not willing to do the surgery at that time.

In the month of August I went into the hospital again for the continued abscesses in my buttocks ,groin ,perineal, and scrotum. I went to a different hospital and was admitted and operated on the next day due to the infection in my body because of the numerous sites that had developed in my nether region. It was after this surgery that I was diagnosed with Hidradenitis Suppurativa I had finally found a doctor who did enough research and properly diagnosed my condition. I thought this was a blessing but it turned out to be only the beginning of my problems to come. I forgot to mention that at this point in my life I did not have insurance and this made my treatment more difficult because I could not afford the aftercare that was needed to try and control my disease. In the month of October I had to go to the hospital again because my condition became inflamed once again. I was operated on and the surgeon debriefed 19 sites on my buttocks perineal, groin, and scrotum. I remained in the hospital for seven days.

During the month of November my condition became inflamed once again but I had obtained a county insurance and was referred to my new best friend and now my favorite doctor in the world Dr. Michael Donohoe of Deland, Florida. He actually knew quite a lot about HS and once again suggested that I receive a diverting colostomy in order for my condition to come to a state of manageability. I was somewhat reluctant at first but after doing some research and coming to the realization that the only other option was to have most if not all of my buttocks, groin, perineal and some of my scrotum excised and then have to have skin grafts after that option was explained I became more amiable to his suggestion.

On December 21, 2015 I received my diverting colostomy and had 14 sites debriefed that were infected. I was in the hospital for 10 days. Since then my life with HS has been one of chronic pain and a plethora of spin off conditions such as high blood pressure, back problems, depression, anxiety, bipolarism, hot flashes, diarrhea, and a general feeling of despair because I know there is no cure. My life has totally changed because of HS. I was granted disability by Social Security in thirty one days due to the fact that HS falls under the rare disease disorder and therefore it was fast tracked but even that was a blessing and a curse at the same time. I go see my doctor ever week where I incur weekly I& D with a local and a number 15 scalpel this is what I have to look forward to every Friday that coupled with a life of suppressive antibiotics which have their own side effects my life now is controlled by my medication. And to top things off my Social Security is greater than my SSI so my health coverage was cancelled and I do not qualify for Medicare until March of 2017, I cannot enroll in Obama care and I have to meet a $756 share of cost in order to be covered by Medicaid. I will not be reimbursed for any monies out of pocket and I now have to pay for my colostomy supplies because my share of cost has not been met. I am so thankful that my doctor will still see me but now I am tasked with making enough doctors appointments to exceed 756$ a month in order to maintain any insurance.

I know I do not have the most despairing story for someone with HS but it is bad enough for me. I hope someone can take something from this story and it may help in any way.

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