Scared

Been battling proctosigmoiditis for weeks now. Two courses of pred were not very effective. At the moment I am on mezavant plus nightly salofalk enemas. I have no blood but I still go to the bathroom between 4 and 6 times on a good day and today I must have been about 12 times. I presume that I may still have inflammation if tis is still happening. Am I right in my presumption.

Got an appointment tomorrow with my GI to discuss further management options. I should go with a multitude of questions but my mind is blank because I feel so stressed and anxious.

I feel like I have no options left. My wbc is always low so the aza and biologicals are probably out of the question. I feel like I want to be back on pred forever even though it wasn't as effective as before. I know that won't happen either.
Please has someone any words of wisdom

I would try steroid enemas in addition to the Asa enemas. Also like somedude said look into vedo/entyvio.

I know we all think and discuss this often and its not an overnight miracle, but helped me relatively quickly. Do you keep a food log? I know doctor's say diet has no effect on it, but in my opinion and my experiences and from things I've read, it does. I am not saying follow any specific diet, but try to watch what foods do what to you. I know for a fact that if I am flaring or having any symptoms of flaring, I cannot eat raw vegetables. I also cannot eat wheat (anything). Strangely I crave crap food like hamburgers, cookies, chili, etc (I usually eat a plant based diet wtih the occasional meat here and there). So I listen to my food cravings and sure enough, I go from being on the toilet 6-8 times a day to 3-4 overnight. If you find a food that reduces your bathroom time, stick with it and only introduce other foods one at a time so you know if that value goes up or down for certain. It takes time to build a full journal, but soon you'll have a good idea of what to eat and what not to eat when having a more difficult time.

This can help get over the hump when medication isn't enough.

Thanks everyone.

Rbartolo = I already have weekly ivig for a neurological problem I have. I have 40g a week. Been having this for 18 years. I don't think it works for my uc. How much do you get and how often. Do you know if it can cause a low wbc. I am trying to look into this.

Anyway saw my gi today. He mentioned a new enema type drug which is an immunosuppressant but he never told me the name. I think it is under trial but he said it may be of benefit to me. He is going to send me more details. He said it didn't have the side effects that other drugs have.
I came out feeling slightly more positive. He said I could use immodium now and again when I go out for the day and also gave me a script for pred to take on holiday with me just incase.
He is also going to investigate why my wbc is low. It has only been low for the last three years which coincides with me starting trazodone. Does this lower your wbc.

I am really tempted to try and come off the trazodone.