Hi I am new to this joint.

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Regular Member

Date Joined Dec 2008
Total Posts : 42
   Posted 12/17/2008 11:42 PM (GMT -6)   
Hi everybody. I am new to this site and thankful I found someone to talk. I was diagnosed with Crohn's in Sept 2001(was 14; 21 now). First, between Sept and Oct 2000(was 13) I went from 168 lbs to 123(best part Ha Ha Ha). I was throwing up everything including water because it burned. Stomach pain made me thought I was dying. I slept on my knees because laying down was torture(also hurt when sat down). Went to family doctor(Jan 01) gave me 3 meds for pain, vomiting, and diarrhea(had me knockout). He told me to go the ER and find a doctor. Took xrays, ultrasounds, catscans, colonoscopy(woke whole time mad ), and lots of bloodwork. It started with an ucler, then Inflammtory Bowel Syndrome, then Crohn's Disease. I have been on Asacol, 6mp, Prednisone(3x), on second round of Remicade, Flagyl, Cipro, Phenergan, Colazal(think there was others). I am on Metoprolol for high blood pressure and heart beating too fast. On Citalopram for my anxiety and depression. Started taking fish oil capsule for my high cholesterol. I had 2 colonscopy this year because the first time I was too tight and inflame to go any further. And I also had EGD(upper GI endoscopy) on the same day(woke up trying to take the tube out my throat nono . I was told in Oct I might need surgery, so Remicade(only crohn's meds I am on) was increased form 500 to 1, 045 mg. I appreciate any comments or stories. I am just really thankful to have find this wonderful site. 

Don't judge a book by its movie.

Post Edited (MsRockonBelly21) : 12/17/2008 9:57:27 PM (GMT-7)

Texan with Crohn's
Regular Member

Date Joined Dec 2007
Total Posts : 362
   Posted 12/18/2008 7:06 AM (GMT -6)   
MsRockonBelly21 -

Sounds like you are going through the proverbial ringer. :) I have been there myself. I now take meds to control the symptoms we both share. None of the CD meds have helped me. I don't want surgery if at all possible... though some days my opinion sways towards it.

Hang in there. I am still searching for a caring GI doctor who doesn't practice "defensive medicine". :(

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 12/18/2008 9:06 AM (GMT -6)   
MsRockonBelly21 welcome to Healingwell. As you can see and will see we have some wonderful and supportive folks who are trying to live with this dd (darn disease) too. Look forward to hearing more from you.
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.

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 12/18/2008 4:44 PM (GMT -6)   
Welcome. I'm sorry you've had sooooo much to go through. It's H#!!, but you will make it through. There is a great group here. Good resources too! Hang in there!

Regular Member

Date Joined Nov 2008
Total Posts : 192
   Posted 12/18/2008 5:18 PM (GMT -6)   
Welcome! Hang in there!
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 12/18/2008 5:56 PM (GMT -6)   
Hi and welcome to Healing Well .Where is your crohn's located most of us have it in the TI area. Some seem to have good luck with the Remicade I took it for 6 months and then got pnuemonia so didn't last long but healed a fistula so that was a help. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 12/18/2008 7:17 PM (GMT -6)   
Hi and welcome. As Gail said, Remicade seems to work well for a lot of people, how long have you been taking it?

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 12/18/2008 11:41 PM (GMT -6)   

First off, welcome to this site! This place has helped me out SO MUCH. Secondly, I am really really sorry for all you have been through. My doc recently had to double my remicade dosage because nothing could keep me in remission without the use of prednisone. Doubling the dosage did the trick for me, and I hope your remicade increase helps you out. Take care and please keep us informed!!


Regular Member

Date Joined Dec 2008
Total Posts : 42
   Posted 12/19/2008 12:03 AM (GMT -6)   
started taking Remicade again in August of this year. In 2005 I only had 2 doses because I made 18 and had to find an adult doctor(was in peds). He refuse to give it to me, so I left his care. I feel pretty okay some days, one day I felt great. Catscan, EGD, colonoscopy  in July, had polyps, couldn't finish too tight and inflame. Second colonoscopy in Oct , look a little better, had fistula. Doctor told me I might need surgery because it not at the level it should be(was on 3 different meds around this time) and I still feeling sick. Increase Remicade from 500 to 1, 045 mg. Nov he mentioned surgery again. Now I had another catscan last week(he said this would be more detail than the first one). So I am waiting for his answer. I met with my primary doctor and she went in the computer and did not find any routine GI appointments or Remicade appointments confused . She told me the first week of Jan the doctors will go through all my charts and if I don't hear from them by then to call and ask what is going on. So I am worrying myself sick. Thanks for the welcome wagon :-) Feeling pretty smurf right now.
Don't judge a book by its movie.
In the past I have taken Asacol, 6mp, Prednisone(3x),  Remicade, Flagyl, Cipro, Phenergan, Colazal(think there was others).                       
I am on Metoprolol for high blood pressure and heart beating too fast. On Citalopram for my anxiety and depression. Started taking fish oil capsule for my high cholesterol. On Calcium pills. On Remicade(its my second time being on it because a former doctor refuse to give it to me so I left) 
Diagnosed at age 14 in 2001, first started sick getting at age 13, Sept 2000. I am now 21

Veteran Member

Date Joined Apr 2008
Total Posts : 1753
   Posted 12/19/2008 12:17 AM (GMT -6)   
Good grief you've been through a lot!! This is a good place to get things off of your chest, out of your head, etc. I hope you keep posting. We all help each other a lot here so I think you'll like it. And of course, welcome :)
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 30 mg, pentasa 2 pills 4x a day, bentyl as needed, prilosec in the morning, tandem plus, humira every other week, and good probiotics.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Attempting the specific carbohydrate diet. Cheated once for Christmas.

"He who has a why to live for can bear with almost any how."

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