Intro- new diagnosis- question

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

baj
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/16/2009 2:25 PM (GMT -7)   
Hello

I'm new here and I'm sorry you all have Crohn's but think it is wonderful that you support each other.

I've been having recurring right side pain for several years, but the MD's would never get further than checking my ovaries a couple times-- no followup. In hindsight it seems like I had lots of "simmering Crohn's symptoms" for years. We thought I just had IBS and I tried to live with it.

about 5 weeks ago the pain came along with severe right back pain that I could tell was related and then neck stiffness too. I became exhausted and was basically in bed. My yearly physical was a week later and they were concerned enough to get me in for a CAT scan that day (? appendix) ----> thickened terminal ileum-----> G.I. two days later----> colonscopy scheduled for 3 days later, in the mean time hip pain so severe couldn't sleep----> "Crohn's"------> Entoric EC ----> seemed to get better for 5 days, then relapse-----> severe pain, blood, mucus, fatigue----> Prednisone (today is one week on it-----> today was check in call, they had hoped to taper, but although I'm better some pain still on right side, fatigue, cramping, etc. so keeping Prednisone at some dose-----> added Bentylin today.

I was told the goal was to get me in remission and then start on Remicade or Humira.

Last Thursday I did go to a Naturapath since my GI would not give any real diet advice "I can't treat your crohn's if you smoke or take NSAIDS and don't do anything stupid, i.e. eat what you know bothers you." The Naturapath has given me some supplements and diet advice.

I'm a bit bummed that even with cutting out gluten, dairy, eggs, fried, etc. eating bland and now mainly resorting to homemade bland soups
I'm not getting a better response from the Prednisone. Haven't had much appetite.

I'm clearly not as severe as many of the stories I've read, but do you think my timeline sounds typical? They seemed to hope that I would be in remission by now.

How long has it taken you all to get into remission with your Crohn's in the past?

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/16/2009 2:45 PM (GMT -7)   
Hey Baj,

Welcome to Healingwell. As you have already seen we have some great folks on this forum all trying to live with this darn disease too.

Remission varies for all. Being that you are newly diagnosed I will tell you that in the beginning it is the hardest for most, because it takes awhile to find the right treatment for you. Diet is pretty individual for most of us too. I live on a low residue diet all the time and that works really well for me. You might want to google it to get some diet ideas.

Hang in there better days will be ahead for you. Right now its just a little hard until they figure out what the best treatment for YOU will be.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 11/16/2009 6:12 PM (GMT -7)   
I was diagnosed almost a year ago and I'm still trying to figure out what works for me (diet & medicine wise)... I don't think I've really attained remission yet but when I do I'll be happy! Good luck and I hope you're feeling better very soon!
19 y/o female, diagnosed crohns december 2008
currently taking 500 mg pentasa 4x daily


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/16/2009 6:24 PM (GMT -7)   
Prednisone snapped my daughter right out of a flare within hours. The dosage was 60 mg solumedrol given intravenously.  
 
Is this similar to the dose you are on?
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past two years. Recent colonoscopy shows stricture gone but still two spots of inflammation in TI. Used LDN to taper off Entocort. Was on Entocort since April 06. Never had D. SCD multivitamin, homemade yogurt, 5000IU vit D3, 500 mg calcium, 27 mg iron, monthly B12 shots, daily oral B12 1000. SCD diet modified to include potatoes and rice. 


baj
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/16/2009 6:33 PM (GMT -7)   
Hi Nanners, Sickandlucky and njmom,

Thanks for the feedback.

nj- no, after almost 2 weeks of entocort he took me off that and put me on 20 mg of Prednisone twice a day. My GI says he is very conservative with the Prednisone. In the past for my asthma when I've had it, it's snapped me out of problems within a couple of days.

I know it has given me some energy (before I was at about 2/10 and mostly in bed) and helped some-- was just hoping for more. I guess if this Bentyl doesn't have me doing better by the end of the week he might raise it, it wants me to call. Since I've restricted my diet so much it's hard for me to tell how much is the Prednisone and how much is the restriction.
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 09, 2016 10:36 AM (GMT -7)
There are a total of 2,735,394 posts in 301,299 threads.
View Active Threads


Who's Online
This forum has 151402 registered members. Please welcome our newest member, Len.
306 Guest(s), 10 Registered Member(s) are currently online.  Details
robotguy, fly with me, smlafleur, iho, maria2016, rockyfords, sam12, JackH, Kristvet86, ljimd


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer