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Denial regarding Crohn's dx.

I was diagnosised with Crohn's in Feb. 2011 (23 yrs old), after being hospitalized for an abscess in my small intestine. Things were confusing at this time and still are as I don't feel I have ever received any real answers. When I went to th Dr. the day I was diagnosised I was experiencing severe pain in my side and a low grade fever that lasted a week. I had been having irregularity and urgency problems prior to this and slowly they were running different test to determine what was going on. On this day they ran a CT scan and I remember clear as day the surgeon came in and said he has never seen a scan look like my scan and needed to get other opinions (later learned I had severe fistula forming Crohn's). I was dosed with antibiotics and put on a clear liquid diet for 1 week. i was discharged with follow up to see a GI specialist.
When I met with the specialist I was immediately put on Remicade, Imuran, and an assortment of vitamins . Throughout the eyar I was horrible at taking the imuran daily. I would miss several days and eventually stopped taking it. I continued with the remicade treatments every 2 months but stopped taking my other meds. I had regular bloodwork done which always came back normal. I had another scan done this past summer and I was told that things looked good and jsut keep doing what I am doing. I just went back to the Dr for a follow up last week and she now says she is not happy with my progress as my disease has been active and I have never reached remission in the past 2 years. So she now put me on a 30mg predisone tapering every 2 weeks regimen and another cipro rountine. I am to go back in a month and if things have yet to progress into remission she talked about doubling my remicade and/or starting a weekly shot of something... I am just frustrated as I don't have any major physical symptoms. My biggest complaint is my stomache growling constantly after eating and some pressure at times but nothing to complain about. No I don't want to end up having surgery but I also don't like taking several medications on a constant basis that do begin to effect how I work and think. Am I missing something and is this just pure denial??
I neve miss work but I am now home for the rest of the week with influenze sweeping through the house...
 
I hope you have been upfront with your doc about missing doses, etc,. that is probably quite important in achieving your remission. Think of it as someone who is bipolar who is on meds and once they begin feeling better they stop taking their meds and then wonder why they ripped the phone out of the wall? Your doc prescribed meds to get you to the point of remission. Interruption in that reduces your chances of remission.

Try taking some digestive enzymes when you eat and then probiotics every day. That should help your digestion. Your doc should know about that; and should be fine with it. It should not interfere with your other meds. Good luck!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

When you had the recent follow up with the doc and she said you had not been in remission what was she basing this on - your symptoms or tests that have been carried out and if so what tests were done? It can be possible for you not to have many symptoms and for things inside to still be active and bubbling away so it is best to follow to try and follow the treatment plan recommended. Out of interest have any type of dietary changes been mentioned to you? Are you still taking any of the vitamins and what ones had you been prescribed?

AB
xx
 
I originally was not fully upfront about not taking the pills. I told her at the last appt and that's when
she started the prednisone and cipro. Regular blood test were ran including liver function, inflammation markers (don't know the exact names) and all came back normal. She changed the meds based on my symptoms of feeling bloated at times and the bubbly stomach. I have eliminated several things from my diet but have never talked about a different diet plan. thanks for the response and the analog regarding taking meds for an illness even when u feel good . I guess that's my struggle I can't seem to move past.
 
The problem is your disease is progressing without a lot of symptoms. The bad part is
the damage is still going on


My old Dr explained Crohns can be graded on two scales . 1-10 disease process and 1-10 for symptoms. You seem to be the opposite of me. I have a lot of symptoms, very painful. You seem to have a higher(advanced) disease process. Does that make sense?


Lauren
 

afidz

Super Moderator
Hi advocate101!
Welcome to the forum!!
I wanted to direct you to a thread on the forum that you might find useful in figuring out a diet that works for you.
There was a poll taken a few months ago about the most common safe and unsafe foods among the members. Keep in mind that are diseases are all different so the lists are not set in stone, but its still worth looking at
http://www.crohnsforum.com/showthread.php?t=17707

hope this helps!
 
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