When making my final decision to have ostomy surgery (permanent due to location of the inflammation – primarily sigmoid/rectum/anus), I wanted to exhaust all my options in ALL realms of medicine. I have tried 6-mp (which I will never do again), humira, prednisone, endocort, remicide, pentasa, entyvio, low dose naltrexone, etc. You name it- I have tried it except for stelera and methotrexate. The reason I have not tried the last two medications are because of what my doctor in Cleveland Clinic told me. He said if I wasn’t responding to the low dose naltrexone – then the inflammation seen on my CT scans is probably caused by scar tissue and NO medication could decrease that. Additionally, if some of my colon was left during surgery, I wanted stelera to be an option for treatment afterward and I didn’t want my body to have the opportunity to build anti-bodies prior to surgery. As for the methotrexate, my doctor said that this medicine is good at keeping Crohn’s disease in remission- not inducing it. So this medication is not appropriate for me at this time.
I also tried non-conventional approaches as well in which some doctors have not approved of yet. This was a first for me in my life to try this alternative but I was desperate to save my colon and I wanted to live with no regrets if surgery ended up being my final option. I had to know if there was merit behind this option for me. I can honestly say for me- it does decrease pain, decrease nausea, and helps me sleep soundly which is next to near impossible when on 60 mg of prednisone. However, I still have frequent accidents and pressure like I am constantly going to crap myself when standing. Again, because my primary problem is caused by scar tissue this option is not solving my issues but is helping with symptom management. Thus ultimately leading me to become more comfortable with the decision for surgery.
With that said, I recently went for pre-op testing this week and on the health questionnaire it asks about all medications and recreational “activities.” This was the first time I had ever had to check yes to recreational “activities” but I needed to be honest because I didn’t want it to interfere with the anesthesia for surgery. I was worried though, what will the nurse think of me? Could she tell my boss? (No she cant due to HIPPA laws) Do they really need to know this? (Yes) The nurse was great, she discussed with me in the most non-judgmental way that the doctor asks that all recreational “activities” are not done 2 weeks prior to surgery if possible- but definitely stopped 48 hours before surgery.
The next day, I also had a visit with my primary doctor. Due to the fact that I am on pain medications, it is their policy to due a urine test to make sure that the patients are not abusing medications. The urine test analyzes the urine for “medications” prescribed and not prescribed. Again, anxiety kicked in. What would my doctor think of me? Would this interfere with my ability to get pain management that I needed? Did he suspect that a positive test for this recreational “activity” was my attempt to self-medicate ultimately leading to my decision to agree to surgery? It never came up and that eased my mind because I didn’t want a lecture. I wanted a nap after my iron infusion from earlier in the day. We ended the appointment talking about the side effects of prednisone and long term use since I have been on it since January. Two major side effects for me to be concerned about osteoporosis and high blood sugar. Side effects that I deem more alarming compared to the side effects of my recreational “activities (and probably what he deemed more important to discuss as well).
Thanks for reading! 🙂
*photo compliments of google image search