Newly diagnosed with Crohn's

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Tara13
New Member


Date Joined Nov 2008
Total Posts : 14
   Posted 11/8/2008 9:44 AM (GMT -7)   
Hi.  I have recently been diagnosed with Crohn's and have turned to the internet for research and support purposes.  I am currently on Prednisone and Azathioprine.  Was on Pentasa in hospital but they took me off that due to blood tests showing some liver problems.  They may put me back on that later. 
My main issues right now are that the disease has affected my joints badly - my knees and ankles ache constantly.  My arms have improved but I still have incredible weakness in my hands (my writing is terrible right now).  I also seem to be unable to sleep.  I am just wide awake all night long which of course is now becoming exhausting.  For the last 36 hours or so I have also had terrible constipation (is that normal for others?). I also had bad mouth blisters but thankfully they have healed.
I suppose really I am just looking to hear other people's experience of this illness and how they cope.
Looking forward to any replies I may get.

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 11/8/2008 10:18 AM (GMT -7)   
Tara, welcome to Healing Well! I'm sorry to hear you have Crohn's, but you've come to the right place for friendship and support! You might want to start off by reading the thread "Crohn's Disease Resources." It provides a wealth of information. Yes, Crohn's can certainly affect the joints. The prednisone may be what is causing you to not sleep well at night. Also, some of us don't always have diarrhea, but get constipated. Just make sure you don't end up having a blockage. Again, welcome!:-) Blessings, Julie
Diagnosed with Crohn's March 2006, Fibromyalgia November 2008
Asacol 3 times a day, Remicade 10mg/kg every 4 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Slow-FE (Iron), Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/8/2008 10:50 AM (GMT -7)   

Hi Tara and welcome to Healingwell.  You will find alot of friendly and supportive folks on this board who can truly understand what it is like to live with this DD (Darn Disease) on a daily basis.  I agree with Julie that the Pred is probably causing your insomnia.  I myself suffer with constipation instead of diarrhea.  I have to take stool softners every night to keep my self regular.  As for the joints, I would recommend you getting a referral to a Rheumatologist.  Many of us suffer from the affects of Crohns related arthritis, osteoarthritis or Fibromyalgia.  The Pred can cause some joint problems also, especially each time you drop down in dosage.  Don't be upset if you don't get alot of responses today, the forum is a little slower on weekends, but quite busy during the week.  Again welcome and we look forward to hearing more from you.

Hugs,

Gail *Nanners*


Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 11/8/2008 11:16 AM (GMT -7)   
Hi Tara!

Here are some great webcasts on online:

To hear paient stories:

www.crohnsandme.com

Crohn’s Disease-Patient Education-3 web casts on Crohn's Disease

Drs. Stephen B. Hanauer and David T. Rubin from the University of Chicago Medical Center, Dr. Maria T. Abreu from Mount Sinai Medical Center, and Richard J. Geswell President of the Crohn’s and Colitis Foundation participate in this 3 part video on Crohn’s disease produced by Patient Education.

http://www.patienteducation.tv/crohns_video.php

I've beend diagnosed wih Crohn's since 2004. Dr. Rubin, who is in both videos, is my doctor!
Erica
Crohn's and Ostomy in 2004


Tara13
New Member


Date Joined Nov 2008
Total Posts : 14
   Posted 11/8/2008 12:08 PM (GMT -7)   
Thanks so much for the replies so far.  With regards to the constipation, how would I know I had a blockage that would need medical attention?

Tara13
New Member


Date Joined Nov 2008
Total Posts : 14
   Posted 11/8/2008 12:39 PM (GMT -7)   
Oh, and one other question blush
 
When they talk of remission what exactly do they mean.  What do you class as remission of your Crohn's?
Diagnosed with Crohn's 27.10.08. I'm a Kiwi looking to increase my knowledge.  As they say KNOWLEDGE IS POWER!!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 11/8/2008 4:52 PM (GMT -7)   
Hi Tara,

I just wanted to welcome you to the forum and let you know that over on the ulcerative colitis forum (UC is a close relative of Crohn's; we share many similar issues) there's a great thread where people are sharing their personal tips for coping with their illness. You can find it here, and you may find it really helpful.

You might find it easier to get responses to your constipation questions if you start a new thread (you can do this by clicking on the "new topic button") and post your question there. We have lots of people on this forum who suffer from constipation, and you should get a reply fairly quickly.

Best wishes,

Ivy.
Co-Moderator Crohn's Forum.


Angela101
Regular Member


Date Joined Mar 2005
Total Posts : 79
   Posted 11/8/2008 6:43 PM (GMT -7)   

Hi Tara!

   Are you taking any pain killers?  If so, that may cause constipation.  How long have you been on prednisone?  I also had joint problmes because of being on prednisone for almost a year.  I was able to improve that by taking calcium supplements and doing low impact exercise.   Its something I always have to be careful about though because osteoporosis runs in my family. 

I remember when I was first diagnosed and had LOADS of questions. I suggest writing everything down and talking your doctor about it all.  It has been 4 yrs since my diagnosis and after a couple of surgeries I am supposed to be in remission.  I am not sure what that means either.  :-)   I hope it means less pain!

 I just got out of the hospital due to an obstruction.  After 2 days of not going to the bathroom and having the pain becoming unbearable and not responding to pain killers I decided it was time to go to the hospital - Xrays showed that it was indeed an obstruction and not just constipation.  If the pain gets really bad and you develop a fever I would go to the hospital asap! 

Welcome to the board!!

 


October 2003 - Dx/ed with Crohn's disease
April 2004 - 2ft of small bowel removed plus complications due to abdominal abcesses - 6 weeks in hopsital
October 2006 - perianal abcess, surgery to have drain inserted
February 2007 - abcess wont heal surgery for temporary ileostomy, started Remicade
Oct 16th, 2008 - Surgery to reverse Ileostomy - in Remission first time ever!!
 
 
 
 


Tara13
New Member


Date Joined Nov 2008
Total Posts : 14
   Posted 11/8/2008 8:33 PM (GMT -7)   
I don't take any pain killers unless I really can't manage the pain.  I have been on the Prednisone for one week (since I left the hospital, where I was on IV steroids).  I am on a tapering dose for 8 weeks and they hope I can come off them then.  Good idea about writing my questions down.  I seem to forget the minute I get in front of a professional what I wanted to ask them!!!
 
I feel for you having to spend 6 weeks in hospital - 8 days was enough for me.
Diagnosed with Crohn's 27.10.08. I'm a Kiwi looking to increase my knowledge.  As they say KNOWLEDGE IS POWER!!


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/9/2008 11:31 AM (GMT -7)   
Fyi Tara, remission is when you have a lack of symptoms. I no longer have D, or gut pain. I still always take some type of maintainence med and watch my diet very closely. You should probably keep some type of food diary to keep track on how certain foods affect you. I still have bad days, but those are just that bad days, usually caused by eating the wrong thing. But those are just bad days not flares. Hope that helps.
Been living with Crohn's Disease for 33 years.  Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.

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