New Here! A few questions.

Hi there! I just joined this forum tonight so I'll give you a little back story and then rant/vent/ask my question. I started having symptoms in October 2014. Severe constipation then diarrhea and almost CONSTANT nausea. At first I thought I could be pregnant, but that wasn't it. I saw my primary physician the first few times because I thought the symptoms could possibly be from having my gall bladder out when I was 18. I started having a large amount of blood in stools and feeling so bad that it began to get in the way of my marriage, work, social life. I finally got referred to see a GI doctor before the holidays but of course could not have a colonoscopy done until after the first of the year this year. After the colonoscopy I was officially diagnosed with UC. I had active proctitis and colitis near the cecum and on the left side. I started with canasa suppositories only and I felt better within a week or so. However, that didn't stay the case and I ended up switching doctors because my doctors was a huge jerk. In February I saw new dr and we added Apriso maintenance dose to the canasa and once again I felt better but it slowly began to come back. I have lost 20+ pounds since all this started in October and I have always been rather thin. So I have not been looking healthy for a while. After seeing the new GI dr a couple more times and being tested for C-diff, celiac, crohn's, etc., and all coming back negative, and no relief from flare in sight, NP started me on prednisone taper last Monday (a week from today or yesterday now). I started at 40 mg. NP also put me back on Zoloft (I used to take meds for anxiety). She said it would help relax my gut. Also started me on an align probiotic. I take Zofran for nausea and Prilosec for heartburn and those help a lot. The first week of all these new meds was extremely hard. I could not sleep and sweated all the time. I literally felt like I may lose my mind. However, this week is starting off much better. I've been sleeping more and I can tell a difference in how I feel. I actually have an appetite back and I'm not having D anymore. First question, what is the next step after a taper like this? I'm so scared I will go right back into a flare and I have literally been flaring for 8 months and I'm so tired of it. Second question, how do you explain to people what is happening to you? I get so tired of feeling like people think I just have a stomachache or I'm being dramatic or making it all up. I'm hoping this forum can help me cope and not feel so alone! Thanks for your time. Hope to hear back from a few of you :)

Do you have rectal meds now ? Usually, you keep up you retail meds and your oral after you have tapered your pred.

Pred is only to get a kick to relief the inflammation but UC med should be taken during and after.

I have never been on oral Pred only had cortisone enema and they made me fell real bad. Could not sleep well and felt a little crazy...

I'm sure some with more knowledge than I will come along and give you more information about medications and what comes after Pred.

about getting the others to understand it is the hard part with UC... As most people don't get it. Unless they care enough to go and read about it. I explained how I fell to the people that are close to me and able to understand. But you will always have people around you that won't get it. For instance my mother in law just mixes it up with IBS... You have to find a way no to care about what other thinks. It is not always easy. With UC I find that not only the symptoms are hard but the worries and not knowing is also difficult. But that not too many understand.

You have come to the right place here. I found a lot of useful information here and moral support.

Chanterelle, I am not on rectal meds now. Only 4 Apriso 0.375 tabs daily plus the pred and probiotic. I really hope after this taper I will be symptom free! I already feel much better. Just trying to cope with the not knowing and the people around me that are clueless about this disease!!

I agree with Ipoop for the rectal meds. I just don't get why some doctors don't prescribed rectal med for UC as the inflammation starts in the rectum and work its way up.