Crohn's Disease Forum » Your Story » Just diagnosed and totally lost

07-21-2015, 11:11 PM   #1
kalazark's Avatar
Join Date: Jul 2015
Location: Cambridge, Massachusetts
Just diagnosed and totally lost

I mean, I get the basics, but I'm more everyday practical.

Can someone steer me to a beginner's guide? Not for the disease, but tips or tricks (hah) or things you wish you'd known when you were first diagnosed? I'm sure that information is here. I just need a little hand holding right now
07-21-2015, 11:32 PM   #2
Lady Organic
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Lady Organic's Avatar
hi and welcome.

I wish I had known Enteral liquid diets were valid and effective treatment for a great proportion of crohn's patients. GIs working with adults patients do not propose this treatment in north America, but it is very popular in some other countries. I wish I had tried it early at diagnosis.
I also wish I had known about possible diets to help me instead of continuing eating really bad food for another 10 years. if diet interests you, fallow my signature for IBD-AID, this nutrition team is at U. of Massachussets, maybe close to where you live?
''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).
07-22-2015, 12:01 AM   #3
kalazark's Avatar
Join Date: Jul 2015
Location: Cambridge, Massachusetts
thank you! headed to the library tomorrow evening for a few AID books I placed on hold!
07-22-2015, 06:46 AM   #4
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.
Sorry you joined the club. It takes time to adjust.
I'd recommend checking out your local library for books on IBD written by gastroenterologist.
My local library is well stocked.

You can ask any questions you want here.

Sending you my support.

Missed your going to the library post.
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:

07-24-2015, 09:34 PM   #5
SarahBear's Avatar
Join Date: May 2012
Location: Charleston, West Virginia

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Welcome to the forum! Sorry you've had need to find us!

My main tip is make use of this forum. Don't hesitate to ask any questions; take into consideration what people here suggest but also do your own research if needed. Always ask your doctor as many questions as you feel you need answered - if they don't take the time to answer them, they're not the right doc (and if you don't feel like your doctor is a good fit for you, look for a different one). It sometimes helps to write any questions down and take the list with you to your appointment - I know I tend to forget half of what I want to ask otherwise.

Also, don't be ashamed. A lot of people are (whether they show or admit that here or not). The effort it takes to feel that way and go to great lengths to hide your condition from those around you just adds stress and makes things harder. At least, that's my take on it.

You'll find what works for you, treatment-wise. Some people have to go through a few medications before they find what works. If that happens to you, don't let it discourage you - there are options. Some people also use diet and other lifestyle changes to help treat their IBD. If that's something that interests you, by all means add that into your treatment regimen as well. There is no right or wrong method.

Most people with IBD have trigger foods that set off their symptoms. Sometimes they're obvious, but sometimes they're not. A food journal can really help pinpoint any you may have. If you decide to keep one, just be as detailed as possible in recording everything you eat / drink and the symptoms you have. The more information, the easier it is to make connections. Common triggers are raw fruits and vegetables, spicy foods, dairy, caffeine, etc. but they can be anything. Additionally, trigger foods ideally shouldn't bother you as much or at all once you go into remission.

I that's all that comes to mind for now, but I'm sure there's more. These are things that would have helped me, but of course IBD affects us all differently so that may all be useless information.

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

07-24-2015, 10:43 PM   #6
Senior Member
Tuff's Avatar
Join Date: Feb 2013
Location: Ontario

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Welcome to the forum, sorry you had to find us.
I would recommend getting your vitamin and mineral levels checked, if your doctor hasn't ordered it already. You didn't mention your symptoms, but if you've had diarrhea, that can make you malnourished.
Caffeine, alcohol and nicotine will make your symptoms worse. Many Crohnies suffer from fatigue, try to get enough rest, even an afternoon nap if you can fit one in. This disease is like a roller coaster with its ups and downs. It can be daunting in the early days, but it gets better.
07-25-2015, 01:55 AM   #7
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Justanothercp's Avatar
Join Date: Aug 2013
Location: Sacramento

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Diet. I went 20 years and one bowel resection before I seriously started trying to alter my diet in a big way. For me, Paleo diet was effective (but everyone varies). I still take lots of Meds, but my day to day existence is much improved on this diet. I'll warn you it is expensive and time consuming, but for me it's been worth it. It has been an adventure.
Good luck.
07-25-2015, 02:23 PM   #8
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wellen1981's Avatar
Join Date: May 2014
Location: Birmingham, United Kingdom

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Things I wish I had known at the start

1) Fish eg Pilchards sardines, mackeral (so the high in omega 3 fish oils) are actually an anti-inflammatory

2) White rice will actually aid in the flushing through of bad bacteria

3) Milk containing lactose actually feeds bad bacteria

4) Most treatments target the symptoms and not the root cause due to lack of understanding of the condition in the medical profession.

5) The side effects to a lot of the treatments offered to us actually cause unwanted side effects and cause other drugs to be needed long term to combat the damage done eg steroids and osteoporosis

and most importantly

6) I wish at the start of me getting ill, way before diagnosis I really wish I had found this forum and read its many posts and sections!

OP, sorry to have to welcome you to this 'club' we are all a part of but with information comes better understanding.

Crohn's Disease Forum » Your Story » Just diagnosed and totally lost
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