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Out of remission, need to vent

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Crohn's Disease
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Posted 1/21/2010 6:01 PM (GMT 0)
Sigh...so as I posted before, I was following SCD, then I cheated over Christmas and started noticing some symptoms. This past week the D has come back with a vengeance. I got my last Remicade infusion 4 weeks ago. It's supposed to last 8 weeks. I'm also on Methotrexate which apparently isn't helping anymore either.

I'm just frustrated because I was diagnosed in July of last year, started on the big guns, Remicade, and they've apparently already worn off. Wow. So now what, another try at a biologic? I know I could try spacing my infusions closer to see if that helps. But if not, then on to another drug and who knows if that will work.

My husband and I would like to try and have kids. We were going to start trying last year right before I got sick. Doctors told me to wait a year after my diagnosis to start trying. I was hoping I'd be in remission when I started trying, but now, I don't know. Plus I've only gotten my period once since I got sick. I went to the gyno and my thyroid test came back normal, which is good, but what the heck happened to my period?

Sorry I'm complaining. I just am still trying to accept the chronic disease label. It's tough, but you all know that.

One question, I called my GI's office to tell them I'm getting symptoms again and to see if I can schedule my next Remicade infusion sooner. They said they want to do a C Diff. test first before they do anything. Is that a normal procedure? I thought C. Diff. was usually related to antibiotic use.

Thanks for listening. I'm just having a rough week. I am usually sympathetic, but right now I'm having a hard time being sympathetic to people who complain about temporary discomforts to me when they know I'm sick. I sound heartless, sorry. I'm just frustrated. How do you guys deal with comments like that?
Posted 1/21/2010 6:48 PM (GMT 0)
I am glad that you came here to vent. We all do understand what you are going thru. I am glad they are doing the c diff test as sometimes that can be confused with a flare. Also, we are really sensitive to foods, so sometimes we can eat the wrong thing and it can cause flare like symptoms. Something else that causes flare like symptoms for me is anxiety/stress. With my anxiety/stress I will get diarrhea, nausea and sometimes vomiting and will not feel like eating for days. You are fairly newly diagnosed so you may be confusing some of the symptoms with a flare, or you could truly be in flare. I know that sounds confusing, but after having this disease for as long as I have, I have learned to differentiate, and one day you will too. I suggest letting your doc do some testing to see if you really are flaring or if its one of the many side issues we can get. But I also know with the SCD diet I have heard that sometimes you will feel bad for awhile until the die off symptoms are over, so it still could be your body adjusting to the diet. Hopefully some of the SCD'ers will be along soon to discuss that aspect further. Hope they get you figured out soon. Hugs~
Posted 1/21/2010 7:23 PM (GMT 0)
Thanks, Nanners, you're such a sweetheart. I appreciate your words.

I am wondering if I am for sure in a flare. What kind of test could the doctor do besides the C. Diff. test that can determine that? I'm afraid it may be a flare though, because besides the D, I'm starting to feel random pains in my knee, and I had major arthritis during the initial presentation. I'm wondering if the pains are a precursor to an arthritis flare up. I'm afraid of having to miss work again, not being able to walk because of the arthritis pain or going back to the hospital. Hopefully I will eventually be able to figure out the difference between a flare or not.

Thanks again for listening. I feel really lucky to have found this place.
Posted 1/22/2010 1:47 AM (GMT 0)
Hi Octobergirl

I'll tell you a little about my recent problems - I was in a flare from August until a week ago when I had my first Remicade infusion. It didn't matter what I ate I was in large amounts of pain and I developed an abscess. Anyhow, I have been tested for C. Diff twice since August. I had never been tested for it before but now it sounds like it will be a regular occurrence for me. Honestly, I don't mind so much anymore doing all of the tests - it helps me learn more about my body and what's going on with it. Anyhow, the test is quite simple. My surgeon ordered it for me after my last colonoscopy because I had been on antibiotics for so long. The test is quite simple, you collect a sample in a container and take it to your nearest lab. It HAS to be delivered within 24 hours and must be kept cool until it arrives at the lab. My surgeon ordered 3 separate tests that I did over 3 consecutive days - sometimes you can have a false negative and more than one test is recommended. My surgeon also had me do a C&S (Culture and Sensitivity test). I'm not exactly sure what the last test tests for but I got a call from my surgeon stating that all tests came back negative.

Anyhow - if I can recommend one thing to you is restrict your diet immensely. I used to eat the same thing every day because I knew it wouldn't bother me. Going to a liquid diet can be good too. I drank Ensure like it was going out of style - I still do as I am trying to regain the 25lbs I lost when I got sick.

Hang in there, it does get better - I'm just finally seeing the light at the end of the tunnel after being off work on disability for 5 months!
Posted 1/22/2010 7:20 AM (GMT 0)
idea that sucks for you i know. I've had crohn's before they knew what it was1970. I've never been on the big guns. but now my crohns is moving up in my throat and mouth and tongue. really painful, I just stated pred. but I was only on entocort, but I've had 3 recessions. due to obstuctions. I went on pred 6 days ago 3-3-2-2-1-1-1.then 2 days later my mouth and tongue exploded with blisters, so now pred again but I'm going to throw in entocort to see it that helps. vicodon if I have to, but that constipates me.BAD.take care

                                                          artist guy

Posted 1/22/2010 3:30 PM (GMT 0)
Hey Farfromnormal- I'm curious, did you end up turning up positive for C. Diff? I'm glad that my doctor wants to run tests, but I guess I'm just a little confused since I haven't been on antibiotics recently, so I'm unsure of why he wants to test for C. Diff. But I'm all for finding out if other things are going on besides Crohns. I'm happy to hear the Remicade is working for you. It did some great things for me in the beginning...hopefully I haven't totally lost any effectiveness from it.

Artist guy, I'm sorry to hear about your issues. Hopefully the steroids will take care of it. I had some mouth issues when I was diagnosed and was so relieved when they finally went away and it wasn't so painful to eat.
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