That is how my GI classifies my UC. The biopsy (in March) showed moderate to severe uc, but my GI was not impressed as it went up only 15 inches which according to him is enough to make me feel miserable, but it does not make me sick. I don't lose much weight, I don't faint. My heartbeat and blood pressure remain low and I have never needed a blood transfusion or iv fluid. I had "low blood counts" -whatever that means- amidst a flare and a hospitalization for a perianal abcsess, but I was only told to "take it easy for awhile".
And because I am not "sick" he keeps me on the same meds even though they are not working well anymore.
For the last year and a half I have been stuck in a flare of varying degrees of miserable-ness. I get better for a few weeks or a month then I get bad again. I go into see the GI every two - three months with the same old story and he just gives me the same old response.
My UC symptoms have been revving up the last month and I now have blood and mucus over ten times a day (including at least three times at night), every time I pass something whether it be bm, blood or mucus, it is a sickening painful event. I feel raw, sore and tired. Everyone here on this board knows what I mean. I am in midst of substantial flare. Rowasa which is usually really wonderful is not helping much because I cannot keep it in for more than one hour and a half.
I have had this GI since 2005 and I have never called him. I have always sucked it up and waited until my regularly scheduled appt. even if I was flaring significantly. I thought that if I didn't call for every little thing, he would understand that if I did call, it was because I was feeling really badly.
So I called him today. Or rather I called his nurse. I told her I thought I should try something stronger such as a steriod foam enema. She is a sympathetic lady and I like her, but she was definetely in a hurry and I didn't get a chance, I don't think, to really communicate how awful I was feeling. She talked to doc and called me back with the instructions from my GI to keep taking all the current meds, but to take them more often and to "just try harder to keep the rowasa in".
Since he wouldn't deign to speak with me personally, I don't know if he even considered my request to try something stronger. I don't want a lot of side effects, however, after a year and a half of flaring almost continuously, I am ready and desperate to try just about anything, but according to my GI, I am not really sick, but apparently just being a big old baby, about my pesky colitis.
I don't think I have ever felt as frustrated and sad about this dd than I do today. I just feel locked in by UC and that there is no escape and I have never felt that before. And I abhor my GI for his contribution to making me feel this way.
Sorry for the rant, but I am just that upset. No one else would understand.
UC diagnosed 10/05, first symptoms 1983
asacol 12/daily and rowasa as needed
Trying out Culturelle Probiotic
past rx: colozal, lialda, canasa
i can't complain, but sometimes i still do. lifes been good to me so far. -joe walsh