Hello I'm new, this is my story......

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Bunners
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/22/2010 4:19 PM (GMT -7)   
Hello my name is Linda and I have been suffering for 22 years with Crohn's, and IBS for 27 years. After the birth of my last child I developed diarrhea which was a relief from the IBS symptoms, that I developed at 23 year of age. After many doctors and tests, I was told that they didn't know what was wrong with me and could I control my symptoms with food. I really couldn't and for the next 14 years I had diarrhea. That's when my boss approached me and said, I really needed to address my problem, it was interfering with my job. I found a doctor who finally discovered that I had Crohn's. With the right medicine and a little time I felt like I was cured. I still had problems and started to monitor what I ate and have since found out that I am gluten intolerant and cannot eat more foods, than I can name. Because of years of not knowing I had Crohn's, I have a stricture of the ileum and the terminal ileum, which is part of the reason for some of my food restrictions. At the moment I have been in a flare for 10 weeks, I have taken a 6 day steroid treatment, which didn't help then I had another colonoscopy and upper GI with a SBFT. The Dr. said, yes, your in a flare, he put me on 60 mg pednisone per day. I have an appointment in 2 weeks and he says we will be trying Remicade, I hope it works the Pentasa doesn's work anymore. My life is usually manageable and I joined to feel like I not alone in my struggles.

Post Edited (Bunners) : 8/22/2010 5:22:48 PM (GMT-6)


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 8/22/2010 5:00 PM (GMT -7)   
Linda,
You have come to the right place. Welcome aboard.
Elizabeth
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/22/2010 5:09 PM (GMT -7)   
Wow, Linda. You've had a tough time, haven't you?

You are definitely not alone! A big welcome to the forum, and I hope you'll be able to find lots of friendship and support here.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14141
   Posted 8/22/2010 5:24 PM (GMT -7)   
I am in a similar situation. I haven't been dealing with this illness for as long as you have but I was well mananged for a period of time on Asacol (similar to Pentasa) and eventually it stopped working and since, I've been struggling to control this. I haven't tried Remicade but I have seen a lot of people having successful treatment with it. I am surprised the GI isn't going to try to taper you off of prednisone and try some other medications before trying Remicade. I am trying to taper with 6mp but it doesn't seem to be helping enough. I am sorry you're flaring up. I hope you feel better quickly.
 
Have your symptoms improved since you started 60mg? I was on 40mg and it controlled my flare pretty quickly but I was never able to maintain remission once i got down below 5mg.
March 2007: Diagnosed with Mild Proctitis - Canasa as needed.
August 2008 - December 2008: FLARE & Anemic - Started Asacol!!
January 2009 - December 2009: REMISSION!! Asacol (9) + Canasa 2x Daily
December 2009 - January 2010: FLARE!! Asacol + Prednisone + Canasa
February 2010 - April 2010: Colazal + Prednisone + Canasa
May 2010 - June 2010: Lialda + Cort Enema + Prednisone : Colonoscopy: Mild / Moderate Active Pancolitis
CURRENT: DOING OK! Prednisone, 6mp, klonopin, Canasa + Vitamin D

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/22/2010 6:27 PM (GMT -7)   
Hello and welcome!!
Vicky

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...

Becky77
Veteran Member


Date Joined Dec 2005
Total Posts : 1768
   Posted 8/22/2010 8:27 PM (GMT -7)   
Glad you found HW. It does help to not feel alone when you have Crohn's. Everyone here is helpful and understanding. Welcome!
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 8/23/2010 5:12 AM (GMT -7)   
Welcome fellow Chronie! Hope your flare weakens and you can start living a normal life. You've been through alot!
Take Care and let us know of your progress:)
Crohns, Diabetes type 2, Fibro, (Depression and Anxiety..who wouldn't?) Back surgery on herniated L-4 L-5 and S-1. Total of 13 surgerys!


Imran 200 mlg, Asacol, Colestid, Bentyl, Lamotil, Paxil, Amitriptlyne, Nexium, Probiodicts, Vit D, Folic Acid, Lots of Potassium, Fish Oil, up to 6 Immodium a day. Oh, and one Giant Pill holder!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/23/2010 7:23 AM (GMT -7)   
Hey just wanted to add my welcome to the others. You will find alot of love and support here from folks who truly understand what you are living with. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 8/23/2010 12:45 PM (GMT -7)   
Hey Bunners! Welcome!

We can relate with almost all your strugles.

Just a thought: Usually docs doesn't like to try Remicade when we have strictures. They usually prefer to "remove" the strictures first, if they are very narrow.

With 60mg of pred, you are going to now in a short time if they are bad, because it's strong enough to heal ANY inflamation you have in your body.

Good luck.
Male, 35 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 75mg Imuran + Iron (doc said i'm in remission, but I'm not sure at all)
 
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