Just Diagnosed with Crohn's...

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TeacherWithCrohn's
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/1/2010 2:57 PM (GMT -7)   
Hello out there :)  Had a colonoscopy last Tuesday, and was diagnosed with severe, deep ulcerations throughout the lower intestines.  Pic's were unbelievable to look at.  (can't believe that's inside of ME) 
 
I am relieved to have a diagnosis after YEARS of inflammation and what I thought were just "strange" symtoms.  It all started in 2005 with a serious case of uveitis.  Both eyes were bright red, almost lost vision, steriod injections in eye, followed by elevated eye pressure and borderline glaucoma.  BUT....had no other symptoms. 
 
Then, had a few cases of joint pain/swelling in knees and ankles that lasted for a few weeks.....but, no other symptoms.
 
Then, in 2008, I had what I call my first "flare-up".  Chronic Diarrhea, erythema nodosom on lower legs, terrible joint pain and swelling lasted for about 4-5 weeks.  It was miserable.  (had a colonoscopy - no sign of anything??)
 
Fast forward to June 2010, I felt that same "flare-up" was here again.  Same symptoms as before, diarrhea, leg sores, but this time....the worst mouth ulcers EVER!!  I had over 20 ulcers in the back of my throat.  I couldn't even drink water.  Lasted about 4 weeks this time.  Sed rate was high, and finally colonoscopy proved that something was going on!
 
So now I wait for my insurance authorization to see GI doctor.  Meanwhile, The GI who did my colonoscopy put me on Lialda, and wrote on my report," See Gastroenterologist for possible Prednisone and Remicaide. 
 
Any advice or thoughts from you "crohn's veterans" would be appreciated!! 

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/1/2010 3:08 PM (GMT -7)   
Welcome to Healingwell. First of all I am sorry you have this darn disease, and please do not scared by all the info on here alot of the long time people on here have pretty hard disease.

With having ulcers in your throat, have they thought about doing a pill camera, or a long endoscopy to figure out if you have ulcers between your throat and you colon? If not might be something to think about or talk about with you new GI. Make sure you get a good GI and that means one you feel comfortable with, who has a good call back time (like less then 24 hours, once you become a patient), and most importantly one who listens to you.

How do you feel right now? As with any chronic illness, I strongly encourage a whole person approach, because this disease does not just effect your body.

Take Care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


TeacherWithCrohn's
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/1/2010 3:16 PM (GMT -7)   
Navy, thanks for the warm welcome :)

My mouth ulcers have all healed since my last flare-up. Although I did have an upper endoscopy, there were no signs of the ulcers, but the biopsies may show otherwise. It's funny, I didn't think my mouth ulcers were related to the Crohn's....they had to explain that it can affect anywhere from "mouth to anus".
Mindy, 33, married for 10 years, no children
Diagnosed with Crohn's: July, 2010
Currently taking Lialda, 1.2 gm (3x day)

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 8/1/2010 3:57 PM (GMT -7)   
Unfortunately this is a disease that can hide in those areas that the doctors cannot see on regular tests (such as a short endo, the 3 foot one)
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/1/2010 4:23 PM (GMT -7)   
Ouch! You have had a horrible time!

I'm glad to hear that they're thinking of starting you on Remicade asap. It sounds to me as if you have a very severe case, have had severe illness, and need to get start healing as quickly as possible.

You're very welcome here.

Ivy.
Co-Moderator Crohn's Forum.

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

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 8/1/2010 4:40 PM (GMT -7)   
Buy the book Breaking the Vicious Cycle by Elaine Gottchall. Then make a decision if it's right for you. Better to read this book sooner than later just so you have this information. Eventually someone is going to recommend it to you so might as well read it early on.
Crohn's diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Low-dose naltrexone since 7/5/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 8/1/2010 9:40 PM (GMT -7)   
Hi Teacher!  I'm sorry that you haven't felt well for so long - hope you get in to see a GI on the sooner side - school is starting soon!  This web site and reading voraciously has helped my kinda "get" this disease process.  The remaining knowledge I've recently decided that I don't really want to know.  This was one of my favorite books:  IBD:  self management:  the AGA guide to Crohn's disese and UC (S. Kane) on amazon.com.  Be well!  barb
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 

Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 8/2/2010 12:34 AM (GMT -7)   
Hey sweetie. Sounds like your body put you through the ringer. It gets a bit better when you start to manage the symptons. Do your homework before you see the GI and keep a list of questions to ask. Sorry we have to welcome you to the club since this "club" isn't one anyone wishes to join (with the exception of anorexics/bulimics :-P).
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 8/2/2010 7:11 AM (GMT -7)   
Hello and Welcome, but so sorry you have to be here. You will find lots of information here and on the web. Please don't hesitate to ask any questions you have, we pretty much discuss anything. As you can imagine, because of the nature of the disease, no subject is off limits. There are a lot of active posters here, some new comers like yourself, and others who have had the disease for years. Please always remember while you are reading that the majority of Crohn's patients are out living their lives barely thinking about their disease. It is only a small minority of patients who are hit the hardest and looking for support to get them through the toughest times. Some of the things you will read here may be discouraging to you. But please remember that with Crohn's everything you read about is a possibility, but most things are not a probability.

Once you find the right course of treatment and get things settled down you will most likely get into remission and be able to carry on with out giving your disease too much thought except for taking your daily medication. Hopefully you will get into a long stable remission and be able to almost forget Crohn's disease.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/2/2010 8:04 AM (GMT -7)   
Hi Teacher, and welcome to the best Crohns forum out there, only sorry you have had to join our "club". The one thing I would like to add to the posts above is for you to always remember that this is a chronic and incurable disease and must be treated at all times. What I mean by that is that even once you started feeling better you should ALWAYS stay on some type of maintenance med. The meds help to keep the inflammation down and allow you to help maintain a remission. Many folks think once they are feeling better they can stop their meds, I did this, and it ended up very ugly for me with an emergency resection (surgery). So remember to always stay on your meds. Good luck and big hugs!

Gail*Nanners*
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"*
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