Hello, my name is Bryan and I am a 40 year old male with HS disease. The pain, anxiety, fear, depression, disgust, and anger from HS all work against me daily, but I have been able to hold on so far!
This is my story…
I was 35 (unless the abscesses I had as a teenager were HS) when my symptoms started. It took another 4.5 years to be diagnosed by a Gastroenterologist. They at first thought the abscesses were Crohn’s related (fistulas). A family member convinced me to get a second opinion on the appropriate steps to deal with my Crohn’s symptoms. The third GI I visited diagnosed HS. That was roughly six months after the Crohn’s diagnosis. The HS symptoms were present for roughly two years prior to the Crohn’s diagnosis.
I’m in stage 3 now, and I have abscesses in the groin and backside areas. I haven’t found an appropriate way to describe the level of pain caused by HS, but I would say that it’s relentless. Working as a Relationship Manager for a retirement plan administration firm, while living with HS has been hard and it has definitely affected my work.
I love to travel and HS causes too many challenges to list. HS hasn’t prevented a trip so far. I’m just back from a short vacation with my brother and I just finished planning my trip to Holland, Belgium, and Germany in 2018. Each time I travel it feels like a victory over HS. The challenges of day to day life are magnified when traveling away from home. I have to plan everything I do on my ability to clean wounds and change dressings every hour or two. Packing enough 4×4 gauze pads and baby wipes isn’t really an issue when traveling in a car. It is more difficult with air travel.
Isle seats near the restrooms are important along with a properly stocked backpack. It is the key to my ability to move about freely. I have family in Ireland and I really enjoy visiting. I’ve been four times since 2004. Nothing gives me more enjoyment than making that trip. It is tough being on a plane for eight hours though, but I make it work. Another problem I’ve found is traveling with some of the medication.
I inject Humira weekly, and the medication must be refrigerated. I can travel with the pre filled pens, but you have to keep them in a small ice chest or a small soft sided insulated bag. I have to alert the airline and provide a letter from my doctor with a few details.
The biggest problem is fear. I fear that an abscess will rupture and I will have to walk around in public with blood all over the seat of my pants for an extended period of time. It has happened a few times so far. The only way I know to deal with fear is preparation. I spend a considerable amount of time planning my trips and making sure that I am prepared for delays and things like lost luggage. I make sure I have a few days’ worth of each prescription in my carry-on bag and leave the rest in a checked bag.
These things are small on the surface, but can be mentally exhausting.
When I was diagnosed with stage 3 HS they started me off with Prednisone and a few different antibiotics. I experienced a lengthy nightmare coming off of Prednisone and transferring over to Remicade infusions every 8 weeks. The medication caused me to feel confused but full of energy. Not a good combination for me. I was snappy with my co-workers. It was pretty embarrassing, and they still mention it from time to time.
The withdrawal from Prednisone was very difficult for me mentally. I have a hard time explaining how it felt other than unnatural and very disturbing. My doctor reduced the dosage over time but not slowly enough. I had to increase it again though and start the process over again. The second try was still rough though. I felt out of control and it was very scary. I now take Entocort EC 3mg three times per day as a replacement for Prednisone, and it has far fewer side effects.
Currently I’m managing my HS by injecting Humira weekly, taking Flagyl, using a topical, taking Zofran for nausea, and I take Lialda (for Crohn’s). I also do my best to eat the right foods, light exercise when I have the ability, frequent cleaning of the areas (4″x4″ gauze pads are changed 8-10 times per day), and rest. The medication basically keeps the wounds at a relatively mild inflammation level. I have constant drainage and light bleeding, but I can get around without too much aggravation. When things are good I can even play a round of golf. It requires a pain pill and a golf cart, but it can be done.
If I could grant someone newly diagnosed a wish, it would be to give them self-esteem that couldn’t be diminished. I know my life would be very different without Crohn’s and HS, but having them has given me a Silver lining I suppose. It provided me a reason to stop smoking cigarettes and drinking alcohol daily.
I stopped both the day that I was diagnosed.