Jeep Seat Or Motorcycle Seat? – Angela’s Hidradenitis Suppurativa Patient Story

Part of my life and happiness for the last twenty years has been riding on motorcycles, a little by myself, but mostly hanging on tight to your friend/life partner! It’s free and daring in the fast lane! Some rides are at least a good 150 miles in the great wide open breeze with long, winding country roads or a good lake view cruise! Free and easy down the road you go! It was a close friendship and bonds with other people who enjoyed the same hobby, life riders! Many great people!

The last five years have been challenging and drastically changed with the capabilities to be able to enjoy the pleasure. I’ve dealt with a very critical illness in 2011 and my chronic illnesses of HS, spinal arthritis and disorders, and the good ole PD. Pilonidal disease is known as “Jeep seat” because it was so prevalent in WWII among service members who endured long, bumpy rides in a Jeep. From 1941-45 it was reported some 80,000 soldiers were treated for the condition. That’s when they started to truly understand the disease.

Incidents of pilonidal cysts and sinuses are about 26 per 100,000 population. Anyone, you or someone you know, may have this issue too.

Well, I don’t spend a lot of time in Jeeps, but these illnesses, especially PD, have put a total damper on my motorcycle rides. So I say my “motorcycle seat” has made it a painfully numb experience. My butt and body just could no longer withstand the journey.

My HS, fibromyalgia, and spinal degeneration have progressed over the years, and it seems like a downward slope since my diagnosis in 2002. The last several years proved the hardest on my body, with multiple different treatments, therapy, and surgeries, including cervical spine fusions.

I had this pilonidal disease for many years accompanying my Hidradenitis Suppurativa. This is a common issue: a large cyst with sinuses at the gluteal cleft and tail bone. It’s also part of the follicular occlusion diseases: pilonidal cysts, and HS. Pilonidal cysts and sinuses with a boil-like process just below the tail bone are seen in about 30% of patients with HS. Having PD alone can be painfully debilitating. And with Hidradenitis Suppurativa, it’s a chronic issue that can keep recurring. This year my flares have been so bad with both, I could no longer cope and deal with its presence.

I got a referral to surgical services and a consultation with a colorectal surgeon to excise the entire cyst and the four sinuses I had. Surgery was scheduled in a month. No bike rides this summer.

Summer is not the favored season for HS patients because the heat and humidity work against us. Most find this time of the year the hardest to cope with and manage our illnesses. This summer proved no different: my flares were non stop. The Friday before surgery, seven days previous, I had to make a trip to the hospital for pain control and incision/drainage of my right breast. It was a good thing because it brought instant relief from the golf ball-sized abscess, and it didn’t look infected or show cellulitis like the last time.

Upon waking on Saturday morning, I could feel the soreness in my tailbone, which was different than my other chronic issues with spinal and pelvic arthritis. I knew it was the cyst, and I thought, “Well, at least this next Friday it will be removed.” I didn’t have much longer to go. By Sunday it was more painful and had swelled. Oh, no, don’t start with me now; surgery is so close! Well, just my luck, by Monday it had abscessed the worst it ever has. Seriously, why? Back to the hospital, I went.

The treacherous, excruciating ride to the hospital was torture. If you ever experienced a pilonidal cyst, you would understand that any movement is unbearable. I have had several traumatic trips to the hospital, more than I would like to admit, but this time couldn’t be excluded from my experiences. They could tell my discomfort and my inability to sit, so they got me into a room ASAP. The staff was very understanding and controlled my pain immediately. They paged my surgeon and assessed the situation.

After a short time, they decided to hold off until the scheduled surgery time, prescribed me antibiotics and pain medication, and I was discharged. So I got back into the car for that excruciating drive home. Thank goodness some of the pain was under control, but it was still uncomfortable. I believe it started leaking out a sinus from this excursion.

I went straight home to lie down to try and sleep. There is sweet relief when it starts to drain because the pressure is released, just like any other HS flare. It ruptured in the middle of the night, and I woke up to a mess.

Purulent puss, blood, and wet gauze bandages were in my jammies. Ewe, Eek! It sure felt 50% better, and it drained for two days. Friday could not come fast enough.

On Friday, surgery time was scheduled for ten a.m. I arrived at 8:15 to register and be prepared. Vitals, gown, blood drawn, and IV and fluids placed. All ready and set to go. Shortly on my way to pre-op, I hoped. It was already a long, tiring day. By ten a.m., I was still waiting. Of course anxiety and anticipation were growing. What’s taking so long, my surgery is scheduled for ten? Well, it’s past ten! I called the nurse to ask why.

The surgeon was delayed by fifteen minutes in his previous surgery. I said, “Ok, take your time, hehe!”

Before too long, they brought me to the pre-operation room. They gave me a cute hair net to wear, checked my vitals again and talked with the anesthesiologist. He gave me an injection and before I even hit the operating room doors, I was out like a light. I didn’t receive general anesthesia, just strong sedation. So I did all my breathing on my own.

No need for post-operative recovery, I just went directly back to my patient room. Before I knew it, I was coming in and out of sedation and on my way to my room, with my family already waiting there too. Such jokesters they are, so funny.

Once I was more alert, they got me some apple juice and peanut butter toast. I was in need: dry throat and hungry. The doctor came in and chatted. Everything went well, and he discussed what to expect and how to care for the wound. I had eaten so I was able to get more pain medication; I was tender for sure.

I asked my daughter to take a picture and check out my bum, as she will be helping with wound care. She laughed and joked, “Mom has tighty whities on, bahahaha!” Oh, the unconditional love and support between a mother and daughter.

So I hung out with my family and worked up the courage to get dressed and ready to leave. I was scheduled for day surgery, so whenever I felt comfortable enough, I could leave. The whole process was about five to six hours. I was glad to have this over and head home, to rest my butt.

Everything went well and has been an okay recovery so far. I’m three days out with wound care twice a day, and I’ll recheck with the surgeon in ten days or so. I’m hopeful that the surgery was successful and the healing will be good. Having HS also, a chronic, painful, inflammatory disease of the skin, which is the largest organ with a magnitude of sensory feeling, this condition runs deep and felt in every way imaginable

Pilonidal disease is acquired involving hair, skin, and perineal flora. Risk factors for PD include male gender, hirsutism, Caucasian, a sitting occupation, deep natal cleft, family history, and HS. Consider that Hidradenitis Suppurativa, a chronic inflammatory disease of the apocrine glands in which follicular occlusion with local friction, also plays a role in patients thirty years or older, especially those with comorbidities such as diabetes and obesity. The disease often affects the groin, axillary, perianal, perineal, and inframammary regions.

These patients need a surgical referral and references because this condition of HS and PD is likely to be a long-term concern, as noted in Medscape article and references.

After three days post operation, I’m managing but sore. I’m doing the best I can and staying positive and optimistic. I have six to eight weeks of full healing time, and then I’m thinking about starting Humira after I heal, but that is ready and waiting to start. I do have another surgery consult and therapy to finish – all in due time. I hope to go for a ride someday again.

Stay strong and keep fighting, fellow HS family and friends. The community support is greatly appreciated!

 


Patient Resources for Pilonidal Disease

Pilonidal sinus disease:  Pilonidal sinus disease Email this page to a friend Email this page to a friend Facebook Twitter Google+ Pilonidal sinus disease is am inflammatory condition involving the hair follicles that can occur anywhere along the crease between the buttocks, which runs from the bone at the bottom of the spine (sacrum) to the anus. The disease is benign and has no association with cancer.  Source: medlineplus.gov

Pilonidal Disease Treatment & Management: There are several medical treatments for pilonidal sinuses. It is fairly widely agreed that an abscess formed from a pilonidal sinus should undergo surgical treatment with incision and drainage. However, regimens for elective treatment of pilonidal sinuses vary widely. Source: medscape.com

WHAT IS PILONIDAL DISEASE AND WHAT CAUSES IT?: Pilonidal disease is a chronic infection of the skin in the region of the buttock crease (Figure 1). The condition results from a reaction to hairs embedded in the skin, commonly occurring in the cleft between the buttocks. The disease is more common in men than women and frequently occurs between puberty and age 40. It is also common in obese people and those with thick, stiff body hair. Source: fascrs.org

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