I had an appointment with my dermatologist today to check the status of my pyoderma gangrenosum since I’ve been dealing with more leaking than usual. I am on doctor appointment overload but this one ended up being what I hoped for. The PG is under control, I don’t need steroid injections…and he basically gave me the name of an appliance to try, recommended I use the creams he had given me, and a few other things. That was a HUGE relief!! I am not an expert on PG so when the bag leaks and I see crater looking things on my skin, I reluctantly make an appointment to go see him for peace of mind. While I was there, the bag leaked all over the place. It was all over my clothes, my body, the table…just everywhere. I wasn’t expecting it since I purposely don’t eat or drink before an appointment with him but today I had a lot of water (yes, I am a dare devil) beforehand which was a mistake I’ll never make again.
After I left the appointment, I was talking to my mom who tried to remind me that going to the bathroom is a normal bodily function and that I need to accept that this is my body. She was also trying to help me put things in perspective since if the bag had to leak, being in a doctor’s office with a man whose son suffers from crohns disease is not an awful scenario. Dr. Goldman was so warm, empathetic, patient, etc. It wasn’t a bad situation in reality but it opened my eyes. It opened my eyes to the fact that this really was my body. Forever. The word “forever” sounds so overwhelming to me and was the part I struggled with when I first had an ileostomy from the ages of 16-19. It is one thing to say you have accepted something but acceptance runs deep. In order to truly have accepted something, you need to be okay with every single part of it.
There are various stages of acceptance and I do know that I am on my way towards fully accepting having an ileostomy. But, based on my reaction in the office today I realize that I am not completely there yet. I still find it embarrassing, the leaking is still upsetting and catches me off guard…and if I hadn’t been with my mom in a doctor’s office I would have been floored. I am comfortable sharing with people that I have an ileostomy and talking about it but when something goes wrong (ex, unexpected leakage), it brings me back to reality in a way. The reality being that I am going to most likely have to live with this forever. Unless I want to undergo another surgery, this is my body.
When you are dealing with something life altering or challenging in any way, it is important to allow yourself time to grieve and time to heal. You will more likely than not end up coming to an acceptance of your situation it just may take some time. And that is okay. I realize now that I am still mourning the loss of the person I used to be, and the way my body worked for 6 years (with a kock pouch). It has only been a little over a year that I made this life altering decision to live with an ileostomy and give up my kock pouch fight. Within that year, I have also had more curve balls thrown my way. I know I am closer than I ever have been to fully accepting life with an ileostomy but today was an eye opener. Acceptance needs to come from deep down inside you. It needs to reach your very core. Saying you have accepted something doesn’t mean you truly have. As long as you are making progress, you are moving in the right direction.