Share Facebook
Crohn's Disease Forum » Ask the Experts » Advice for people newly diagnosed with Crohn's Disease or Ulcerative Colitis


05-29-2013, 11:20 AM   #1
David
Co-Founder
 
David's Avatar
 
Join Date: Feb 2006
Location: Naples, Florida
Advice for people newly diagnosed with Crohn's Disease or Ulcerative Colitis

Cat-A-Tonic recently asked,
Frequently on the forum we will see new members who have just been diagnosed with Crohn's or Colitis. They are often terrified, having just been told that they have a lifelong, incurable illness. They come here looking for information and answers, but it is all so new and shocking to them that often they don't even know what questions to ask. Is there any general advice you'd give to patients who find themselves in this scary position?
Doctor Emmanuelle D. Williams, M.D. of the Penn State Hershey Inflammatory Bowel Disease Center took time out of her busy schedule to answer this question. A little about Dr. Williams:

Emmanuelle Williams, MD is the Assistant Director for Clinical Medicine and Education, Hershey/Penn State IBD Center.

In regards to the question, Dr. Williams stated:

Unfortunately, to date, Inflammatory Bowel Disease (IBD) is incurable: even if removed by surgery, Crohn’s recurs and while surgery removes ulcerative colitis, it leaves the patient without a colon, and does not remove the risk of other IBD complications. However, this does not mean that patients with IBD cannot heal. Once the shock of the initial diagnosis is, no pun intended, digested, patients should shift their focus toward healing: leading full, happy, productive lives.

IS THIS THE RIGHT PRACTIONER FOR ME?
Given that the disease is life long, patients should seek a physician with whom they feel comfortable having a long term working relationship. It is important to find a physician with experience in the field – not all gastroenterologists or surgeons are equally comfortable with treating IBD. All personalities are different, and while a physician may come with the highest accolades, they may not be the best fit for a particular patient. The Crohn’s and Colitis Foundation maintains a list of physician members, and this is often a good place to start along with recommendations from referring physicians and other patients with IBD.

HOW CAN I PARTICIPATE IN MY TREATMENT DECISIONS?
Education is key. Getting reliable information about the disease is essential so that patients can reduce fear of the unknown particularly with respect to available therapy options and also play an active role in their treatment decisions. It is important, however, not to read everything the internet has to offer – many websites, unlike this one, may not have specialists offering advice and information may not be reliable. Also, while chat rooms and patient testimonies can be helpful, a patient should keep in mind that patients who write about their disease are often driven to do so due to extreme circumstances – either positive or negative – and may not be truly representative of all patients with IBD. An entire group of patients with mild, or very manageable symptoms may choose not to contribute.

WHO CAN HELP ME OUTSIDE THE MEDICAL FIELD?
Enlisting the support of friends and family is critical. Having someone who understands the disease and how the disease affects the particular patient is essential. Also a companion during office visits can be very helpful, not only in alleviating waiting room boredom, but also in contributing questions and in remembering physician discussion details. Support groups can also be an excellent resource. Many groups feature educational components, and while the forum of a support group may not be for everyone, it can be the starting point for a friendship , a recommendation for a physician or for becoming a disease advocate in the community.

WHAT ELSE CAN I DO?
The goal is that a diagnosis of IBD not be the sole focus of a patient’s life. To that end, it is important not to ignore other facets of health – be it exercise, healthy relationships, proper nutrition and continued monitoring of other healthcare issues. A primary care physician can be a key ally in the care of patients with IBD.

BOTTOM LINE
Ideally we would be able to cure IBD, but while science catches up, playing an active role in working with the diagnosed disease, being open to change as therapies become available, and planning for whole patient centered, wellness directed treatment can lead to effective healing.
Thank you to Dr. Williams for her time and expertise!
05-29-2013, 07:35 PM   #2
Jennifer
Adminstrator
 
Jennifer's Avatar
 
Join Date: Jan 2010
Location: California

My Support Groups:
Very well said. One of the most important aspects to me in relation to the forum is this part, "Also, while chat rooms and patient testimonies can be helpful, a patient should keep in mind that patients who write about their disease are often driven to do so due to extreme circumstances – either positive or negative – and may not be truly representative of all patients with IBD. An entire group of patients with mild, or very manageable symptoms may choose not to contribute." Many people try to research IBD and treatment plans online and get really scared by what they read yet we all must remember that many people online are seeking help more often than sharing their story of successful treatment. Try not to scare yourself from treatment by reading experiences from only one side of the spectrum.
__________________
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
06-04-2013, 11:26 AM   #3
TGVphoto
 
TGVphoto's Avatar
 
Join Date: Jun 2013
Location: Johannesburg, South Africa
Hi Im newly diagnosed with a wonderful version of Crohns . . . I have an appointment scheduled with a Dr. in two weeks from now . . . but I cant live on air until then.

My question is really about the purpose of the diet.

Are specific foods encouraged or discouraged because they cause discomfort or because they contribute to worsening your condition. ie. if i eat something on the "No No" list and feel fine . . . does that mean Im unaffected or is it silently killing me anyway?

So do I follow a certain diet because it will help increase longevity or because it wont hurt if I eat it?

I dont know how else to pose this question, I just hope you understand what Im trying to ask.

Last edited by TGVphoto; 06-04-2013 at 12:45 PM.
06-13-2013, 10:07 AM   #4
Pointy_ears
Forum Monitor
 
Pointy_ears's Avatar
 
Join Date: Sep 2012
Location: Birmingham, United Kingdom
Hey TGV, I'm not sure this post is in the right place. But I'm happy to answer that for you. Yes there are generalised lists of good/bad foods for people with ibd. However crohns will affect you differently to anyone else therefore foods that trigger symptoms in me may not be harmful or trigger symptoms in you. The best thing I can recommend is to start an elimination diet and keep a food diary so you can see what foods agree with you and which foods don't. A lot of people here have has success with juicing and various different diets such as Paelo. Have a look at the diets section of the forum for further advice.
__________________
Diagnosed:2009
surgery:2012 hemicolectomy, repair of fistula to the bladder, draining of abscesses surrounding bowel supportive tissues.
Ileostomy:"Junior" (Reversed April 2013)
Meds: Azathioprine

"It's life Jim but not as we know it!"
06-14-2013, 04:02 AM   #5
TGVphoto
 
TGVphoto's Avatar
 
Join Date: Jun 2013
Location: Johannesburg, South Africa
Thanks Pointy Ears, will check it out
08-21-2013, 06:58 AM   #6
mikeleedodge77
 
mikeleedodge77's Avatar
 
Join Date: Jul 2013
Location: lawon, Oklahoma
Hello all! Got a question. I have Crohn's and wonder if I eat right on my diets I suppose to eat to pervent a flare up! Do I still need the meds? Right now I am taking steroids prezones and waiting for humira. Thank you!
08-29-2013, 11:50 AM   #7
Jison0612
Senior Member
 
Join Date: Aug 2013
Location: Georgetown, Kentucky

My Support Groups:
How do I know when my Crohn's is in remission? And am I crazy or does the heat and humidity affect my symptoms in a bad way? I feel bloated, tired, I have bad indigestion, and rectal bleeding(tmi) I'm Curently not on any meds for my Crohn's so maybe I am having a flare up??
08-29-2013, 01:10 PM   #8
mikeleedodge77
 
mikeleedodge77's Avatar
 
Join Date: Jul 2013
Location: lawon, Oklahoma
it sound like you having a flare up and i am not sure heat cause any symptons of crohn's flare up. you not taking any meds for your crohn's? hope you get better soon.
09-03-2013, 07:27 PM   #9
Jison0612
Senior Member
 
Join Date: Aug 2013
Location: Georgetown, Kentucky

My Support Groups:
I am now the doc put me on entocort and flagyl I've been on them for 5 days 3x's daily I'm definetly seeing improvement it just seems to be taking a while to get me back to normal but I'm hopefull this works!!
Reply

Crohn's Disease Forum » Ask the Experts » Advice for people newly diagnosed with Crohn's Disease or Ulcerative Colitis
Thread Tools


All times are GMT -5. The time now is 07:07 AM.
Copyright 2006-2017 Crohnsforum.com