Frustrated (long, sorry)

I need to vent a little. I am so frustrated with waiting. I've been in this flare now for almost a year and a half. I was a lot worse a year ago this time...now i'm at about 70%. No blood but pain and D and all the side effects of the pred (been on that for a year as well)

My Gi took me off of imuran to see if that is what has been making me so nauseas. And since being off I am way less nauseas. So he sent my stools to be looked at once more to be sure my nausea isn't another kind of infection or a bug i picked up last nov in mexico. If it comes back clear we are going to try imuran again. if it is what is making me nauseas on to remicade I go.

In the meantime he has finally lowered my pred to 10mg (it's been at 15 since last august, coming down from 60 in jan 07) I am steroid dependent and now face coming down on pred whiile not on imuran. Last time I was under 15 mg it was horrible.

I'm just so frustrated with waiting for test results and waiting to see if drugs kick in. I'm not horribly flaring so I'm having a hard time conceding to remicade. I want off of pred but am so afraid of the next few days and weeks. These past few months I have jsut been simmering and waiting. Having blood drawn monthly for cbc and bimonthly for prometheus...and not getting any better. Where i'm at is almost livable. I'm used to the pain now. I've accomodated the bathroom in my schedule (6-10 trips a day) even when I am teaching. My parents are pushing me to have surgery and don't seem to understand why i'm not jumping to get rid of my colon. My Gi has never even brought up surgery. I could see considering it if I was bleeding heavily still but not where I am now. Oh and now i find I also have strictures and am having pain and problems with my diet becasue of that. I can't seem to tolorate much fiber at all without lots of pain.

I'm just so sick of being sick. I'm so glad that I'm not as sick as I was a year ago but at least then there seemed to be urgency in my treatment. Now I feel as though all I do is wait. I wait for the next blood test, the next dosage, wait for the drugs to kick in.

Thanks for the shoulder. It really does make me feel better just to get it out there.

Hi Kelly - I just wanted to drop a line and tell you that I hope you feel better soon. If you aren't happy with your treatment, you can always talk to another GI. I am a bit surprised you were pulled off Imuran only because it takes so long to build up in your system. Perhaps, if you're only off it a few days you can go right back to your earlier dose, but given that it may be making you sick, you may want to go back up on it slowly. I found the hardest part of Imuran was getting on it, and scaling up the dose, so just do that slowly to give your body a chance to adjust.

Hang in there and remember that neither your parents nor your GI know what you're feeling. so you have to do what works for you, even if others think you should be doing something else.

feel better soon.

Have you tried dietary changes, omega-3s to reduce inflammation or probiotic supplementation? There are alot of ways you can improve your gut ecology and assist healing so you're able to reduce or eliminate medications. The book Listen to Your Gut has a wealth of knowledge on various options.

Thanks all.

I was on rectal meds but they weren't doing anything and I couldn't afford them anymore.

I have tried many many different dietry adjustments and plans with no success. I have tried chinese herbs, aloe, probiotics, nothing has helped (and I gave each plenty of time, usually more than a year). I am hoping the imuran will work the second time around but I am just tired of waiting to see if it will.

Thanks for the support!!!

Kelly - so sorry you're going through so much! Do you think any of the nausea could be from your reflux??? I find that sometimes that's what's causing the most of my nausea... Just trying to help you and your doc trouble shoot!

Honestly, I'd think that if the Imuran didn't get you off the pred yet, it might be time for Remi. A year of flaring seems awfully long. Although my first flare etc. lasted nine months... My second "major" one was another nine months - with that one I started Imuran to get off of the pred.

Vent all you need! We're here :)

Kelly, I really feel for you and am sorry you are having such a rough time right now. My longest flare like you are dealing with was about 3 months and I was at my wits end trying to cope then. A year and a half is just plain cruel. I hope you get feeling better soon. I wish I could offer something other than healing thoughts but I have no other suggestions for you. Hang in there. Big hugs.