Let this be a cautionary tale to anyone who has been told that you do not get systemic effects from steroid enemas. I have been in a flare since the end of August - probably a relatively mild flare compared to what a lot of people here are dealing with: urgency, blood, 4x per day. The thing that was bothering me the most was the blood loss and fatigue. After seeing a new GI in November, I was put on a new med regime to get this flare under control. After having no success with Entocort enemas, I was put on Betnesol. I was told that the Betnesol enema may have some, but not too much, in the way of systemic side-effects (Betnesol is a corticosteroid called Betamethasone).
Within one week of starting this horrible drug I started with dizziness, confusion, mania. The bleeding lessened, but did not go away. By week two, I was into the next phase of zero energy, depression, physical exhaustion, complete lack mental accuity, moon face, facial hair, weight gain, acne. I had what I thought was a bad canker sore for the past three weeks (which I showed my GI Dr. on Tuesday). It turns out that the canker sore is actually a thrush infection which has been caused by the immunosuppresents. The fungal infection is so bad that it has migrated down into my esophogus and caused craters!!!!
Here I lay - exhausted both mentally and physically. Depressed, unalbe to think clearly (I had an episode of becoming Catatonic which I told my Dr. about - I was completely unable to speak or move in the grocery store for a few minutes). My face is so swollen that I am unrecognizable. My immune system is shot. I can`t imagine how long it is going to take to get my health restored. I am so so sorry that I ever went on the steroid enema. Knowing how my body has reacted, I will NEVER take them again unless it is seriously a matter of life or death. I felt much better during my worst flare than I do now.
35 year old female, diagnosed with UC in 2006.
At diagnosis, mild proctitis/proctosigmoiditis (first 15 cm), now moderate inflammation in first 40 cm.
Meds: 4 x 1.2 mgs Mezavant and Betnesol (5 mg in 100 ml) enema per day.