Crohn's Disease Forum » Your Story » In the Club

07-13-2015, 01:27 PM   #1
Join Date: Jul 2015
Location: Derby, United Kingdom
In the Club

well as if I didn't have enough on with other areas of my life I get this. I have no idea what is what because my dr is next to useless. I have to go back for blood tests etc soon but I'm still in the dark about what the hell to do. All I we given was an info leaflet. What the heck? What am I meant to eat? Feel like throwing caution to the wind and ordering the biggest, fattest portion of fish and chips going. What the worst that can happen? So confused as to what I have got
07-13-2015, 06:22 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome,
Were you not told what you have or you don't know what it is?
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

07-13-2015, 09:02 PM   #3
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Join Date: Jul 2008
Location: California

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What was the leaflet they gave you?
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-13-2015, 09:47 PM   #4
Lady Organic
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hi and welcome.

im sorry about... your Crohn's disease diagnosis? Dont be shy to return to the hospital and find a nurse who works in the gastroenterology department. Just go. One nurse over there should be qualified to talk to you about your diagnosis. Nurses have more time than doctors to talk. im sorry you fell on a doctor who seemed quite speedy to you. next time you meet him, be prepared with a list of question on a paper and dont be shy to push each questions until you get all your answers.
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-13-2015, 11:04 PM   #5
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Join Date: Dec 2013
Location: Maine

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You have been diagnosed? I am a big supporter of writing down questions/concerns in between doctor visits,as Lady Organic suggested.It helps make appointments more productive.We can be flustered or feel rushed and get home and realize the questions you had went unasked.

Voice your concerns when you go for your next test.
"It does not do to dwell on dreams and forget to live."
07-14-2015, 06:08 AM   #6
Join Date: Oct 2012

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Don't panic. For now, I'd say eat mainly what you feel like, but keep a balanced diet and eat things easy to digest rather than, e.g. alcohol or huge fatty meals. You may also do better avoiding fibre. But don't try and make radical changes at once, you'll learn over time what is best for you. If you're very underweight or if you feel food is having a big negative impact, maybe ask to see a dietician.

Are you on medication? Do you have an IBD nurse? If your doctor - whether it's your GP or your gastroenterologist - is really not helping you, you can ask to see someone else.

Have a search online and you'll find plenty of useful info. If anything you find scares or confuses you, if you like post about it on this forum and someone will help you figure it out. Remember that you will not have the same experiences as everyone you read about. It takes time to get your head around having a chronic illness like this - your life will go back to feeling normal again.

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