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04-25-2014, 02:05 PM   #1
Ladyslipper
 
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Update

Hi there - I joined this forum just a little bit ago as I was newly diagnosed with crohns in March after being ++ sick. I just wanted to give a little update as I had my first appt with the GI this week. I actually am finally starting to feel better but it has been a pretty rough 6 weeks - just starting to eat again (very carefully, mind you) and I am down about 25 lbs. The D has stopped and I actually have felt like myself for the past few days I have tapered down from 30mg of Prednisone (thought I was losing my mind while taking this) to 5mg and am to stay on this for another 2 weeks. I have started on Imuran 50mg daily and am to increase this in 2 weeks time. He told me there is a risk that I may flare again once the Prednisone is stopped but feels my CRP and other blood work is good at present and that he really hopes this will stay in remission at present - I will keep my fingers (and toes!!) crossed.

I had baseline blood work and am scheduled for weekly blood work. I am pretty nervous about being on this as I am a nurse who works with the public and a bit worried about my immune system being so low, but this Dr. felt this is my best option at this point. He is scheduling me for an MRI of my pelvis/abdomen to make sure there are no fistulae. He said the crohns would be considered severe when my colonscopy was done when I was ++ sick and it was located in the terminal ileum/small bowel. I must say that I was very pleased with the appointment in the regards that I did not feel rushed and that he was very thorough and answered all my questions. I am scheduled to have vaccinations (not live ones) up to date with my GP next week and am to check in with the GI next week following my first blood work after being on Imuran for the week. I also have an appointment with a dietician next week that may help me with some of my food issues - I really am restricting a lot I know, but just so fearful of what will cause me more harm. Feeling very nervous about entering another drug into my system but feel that I am starting to get stronger. I plan to return to work next week after being off for almost 2 months. I have started walking each day and that has been so helpful for my mental status as well as physical - I used to go to the gym about 3x/week but not since I became sick. I feel mentally stronger as well since the Prednisone has been decreased as well as just coming to terms with the diagnosis. Presently I am taking both Imuran and Prednisone in the am with a bit of breakfast and this has been ok, but not quite sure if this is correct. Anyways, just thought I would do a little update as I think the last time I posted I was feeling so overwhelmed with life but now seem to be a little more positive. One day at a time I guess...
04-25-2014, 02:45 PM   #2
afidz
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Thanks for the update!
It is common for people to start to flare once they get down to the lower doses of prednisone, but if you are doing well at 5mg, you have a pretty good chance at successfully tapering off of it with out flaring.
Its great that you are meeting with a dietitian, its always helpful in the beginning of a diagnosis. Keep in mind however that what the advice the dietitian gives you is just a baseline. Everyone reacts differently to different foods and really the best way to find out what doesn't or does work for you is trial and error. Take a look at this thread http://www.crohnsforum.com/showthread.php?t=17707 , its a list of foods that can and can't be tolerated by members of the forum. It can give you some insight as to what to stay away from for sure and maybe help you form some questions for your appointment with the dietitian.
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
04-27-2014, 05:05 PM   #3
David
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Join Date: Feb 2006
Location: Naples, Florida
We appreciate you taking the time to share an update! I'm glad you're starting to feel a little bit better! I pray that it only gets better from here on out. Please continue to keep us updated and let us know if there's anything we can do for you
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