
Crohnies may find the following interesting. My Crohn’s disease symptoms appear to be partially unpredictable. You never know how you will respond to a new medication, different food or just change over time. Prednisone, Lidocaine gel, Azathioprine, Remicade and many other related medications all seem to help with symptoms most of the time but it seems some type of flare or odd symptom always comes popping out at an inconvenient moment.
I had the flu shot but I believe I had a mild version of the flu anyways characterized by a lot of hot/cold flashes and uncontrolled shaking. The mild flu seemed to trigger a very unpleasant short crohn’s flare which I thought was not going to go away but fortunately it did not last. I have not had anything that painful for a couple years. I contacted both doctors during this flare and asked for some type of heavy duty pain medication for the pain in my rear end. Doctors are reluctant to hand out strong opioid type medications these days because of the opioid crisis so that was a slow battle. I was going to go into the hospital and refuse to leave until they treated the symptoms but the symptoms resolved completely by themselves before any new medication was given. Who knows why?
The GI doctor seems to be pinning the main long term symptom control on a heavy Remicade infusion dosing schedule. I believe this is gradually working. It better work. I saw one Remicade bill on my insurance for $56,000 which I consider to be impressive. I couldn’t even pay for the copay of one dose without MAPP insurance and I get a dose every six weeks.
Prednisone made a dramatic improvement in an earlier flare that I had and there were no side effects at all while I was taking it. There has been a long term change in my symptoms after taking prednisone but I don’t know how long that will last. Doctors do not like prescribing prednisone because of potential side effects.
I have been taking Azathioprine for many years. It does give me a lot of skin tags but other than that I don’t even notice any effects. I take a variety of other medications for Crohn’s related problems which tend to make me a little tired and fall asleep in public if I relax. I slept through the latest Star Wars movie while snoring loudly which probably irritated everyone near me in the cinema. My son tried unsuccessfully to keep me awake during Star Wars but it was hopeless.
I have not been impressed with diet based treatments for Crohn’s. Unless I eat something in large amounts that would upset anyone’s digestion I have not noticed a correlation between diet and Crohn’s flares.
This has just been my experience and all Crohnies may have different results with the same medications or food. So far my GI tract is intact and I would like to keep it that way without any modifications from happy knife wielding surgeons. My normal GI tract has lasted a long time with these symptoms which seems to surprise the doctors. Hopefully I will die of old age long before Crohn’s disease kills me with some lovely side effect.




