Living with indolent systemic mastocytosis (SM) for the last 25 years has caused me gastrointestinal problems almost daily. I have had diagnostic tests for all my medical issues pertaining to ISM — except the dreaded colonoscopy.
I don’t know if it was the embarrassment of the procedure that kept me from doing it or the thought of their finding something since I have so many stomach problems. But I got my courage up and got it scheduled.
What is SM?
Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.
It was last week, and the prep, of course, was terrible. I won’t go into detail, but I had to drink a large amount of liquid that cleans you out the day before the procedure. That was not fun.
Read more about SM treatment and care
My friends and family who love me and knew about the procedure, of course, started sending me all the videos of people after their procedures having to pass gas before they could leave the facility. Oh, the humiliation, I thought. I can’t do that!
I was also starving because all I could have was Jell-O, chicken broth, juice, soda and water. Nothing red, orange or purple, either. There went two of my favorite Jell-O flavors. I like to eat, so that was hard, especially when the family was eating supper that night. I took time the night before to prepare their meal. I wasn’t going to cook while starving in between trips to the bathroom.
The night before the procedure, I started getting nervous, of course. I thought this was going to be the most embarrassing moment of my entire life. Waking up the day of the procedure, I wanted real food so bad, and I was not in the best of moods. Basically, I was hangry! I got to the center where the procedure was taking place, and it wasn’t too long before they called me back.
The nurse came in and put an IV in my arm. The anesthesiologist then made his appearance and told me what to expect as far as sedation. They rolled me into the procedure room, where there were a couple more medical staff, and they must have seen the look on my face because they immediately told me that they do 80 to 100 of these a day.
The anesthesiologist told me it was time to go to sleep, and the next thing I knew, I was waking up in recovery. Thank goodness no one told me I had to pass gas before I could leave! I had made a big deal out of nothing. I should have already done this and not waited until I turned 56, with so many problems. The results were clear, and I don’t have to do it again until five years from now.
I want people to know not to let the “What ifs?” get in your head and prevent you from scheduling any diagnostic test that could help you. There was nothing embarrassing about this procedure. Diagnostic tests are so important to those of us living with any disease. I must have another bone marrow biopsy next month. I have had so many of those that you can see the tiny scars from the needle.
The bone marrow biopsy to me is more pressure than pain. It can be tolerated. Everyone who has done mine talked me through it and helped put me at ease. No, I am not looking forward to it. But I know I can handle it, and I also understand the importance of having it done. Schedule the diagnostic test that you need to keep your health the priority.
Sign up here to get the latest news, perspectives and information about SM sent directly to your inbox. Registration is free and only takes a minute.
