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Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 1/27/2010 11:38 AM (GMT -7)   

Hi there....

It seems to be a great forum here, and it’s time to introduce myself like Nanners “oriented”.

For a long time, I didn’t see any reason to be part of a community like this, but things change, didn’t it?

I think that now I begin to understand what mean to have a progressive disease.

It started in may-1994, with a persistent diarrea. In november I received the right diagnostic of Crohn (excellent gastro - in Rio de Janeiro). I was 19 and happy to know what I had. The only simptoms was diarrea, and some disconfort. So, 40 mg of Pred was my fresh start. Followed by 5-ASA and Imuran.

After 7 years of mild simptons (no severe pain, but some diarrea), I had a blockge with a “popcorn” dinner (almost a suicide!). Surgery (2001), and 4 months of remission. Followed by Imuran and iron (here and there).

More some years with mild simptoms, enhanced by Questran (“solved” the diarrea problem), and finally, in 2008, I had a stricture (long one). Heavy flares, prednizone + imuran, and, for the first time in my life, heavy diet.

Ressection in dec/2008, with high expectations, and I let go 25 cm (almost a foot) long section of my small bowel. And guess what? Two weeks (lazy gut) in the hospital and no remission at all...

So, started Remicade (here we go!) with some relief, but painful flares kept coming. Combined Imuran + Remicade in sep/2009 and experienced 3 months of total remission (first time in my crohnie life). BUT, this paradise just ended in 2010 with new, although weaker, flares. More stress comming...

That’s why I’m ready for a more stoic approach, with lower expectations.  

Glad to find you, and back to “school”.

 

And... in my learning journey, one question ecoes in my mind (after reading a few topics):

Since bread (yeast), milk, raw fruits, cheese (dairy), sugar, critics (orange juice), cafeine and more seems to bother most of our guts (ok, ok, everyone is different, but I’m sure you understand me!), WHAT DO YOU HAVE FOR BREAKFAST??  


 
Brazilian sick fellow...
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa and Imuran
Blockage - 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 mg Imuran + Iron
 


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 1/27/2010 12:07 PM (GMT -7)   
"popcorn" dinner (almost a suicide)nono lol boy do I understand that statement couldn't phrase it better myself!! As for the last question, I don't ever have breakfast I start with lunch.:-)

Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Asacol, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 1/27/2010 12:29 PM (GMT -7)   
wow..popcorn..suicide good choice of words ..i am so sorry for all you hv and are going thru..i know you will come to find many answers here and the ppl are very friendly n helpful.....stay with us....breakfast is usually a banana and ensure lol...just recuperating from lg hospital stay...t/c n keep posting..no such thing as a stupid uestion imho...lyn
                          
                                Co Mod for Crohns, Anxiety/Panic, Alzheimers
   Crohns..Pyoderma gangrenosum,..Anxiety / panic..Fibromyalgia,,Neuropathy...Deaf...Seizures
 
                        I DONT COMPLAIN...OTHERS ARE WORSE OFF THAN I AM                                   
                                                     2010       
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NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8581
   Posted 1/27/2010 12:37 PM (GMT -7)   
Hi.

The onset of your disease and subsequent few years sounds like the closest first few years of my Crohn's I have read. Hmm. Were you on 5-ASA and Imuran for the whole 7 years of mild disease?

I've kind of been blaming myself recently for my Crohn's getting worse - but reading your story I honestly, really wonder if taking 5-ASA would have made any difference whatsoever. I wish sometimes I were "God" so I could know these things.

Oh and to answer your question. Cereal, mostly. Ham and cheese toasted sandwich today. Sometimes, eggs. That's my lunch, though, not breakfast. Like the poster above me, my first meal of the day is lunch. Quantity is what does me in, so I eat basically two meals a day only.

Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 1/28/2010 5:08 AM (GMT -7)   
Thankyou... I already feel welcomed!

As for the "popcorn" thing, I think I misunderstood the difference of "shouldn't" and "must not". Well... living, slicing and learning.

NiceCup, I actually didn't combine Pentasa with Imuran, just stopped the first and started the second after 3 years and something after the diagnosis. And used Entocort too, before Imuran, but worked only for 3 months (white working, it was pretty good).

As for the breakfast, I allways (when not flaring) have some toasts, with butter and/or white cheese (maybe changing...) and juiced bananas/apples/papayas (smoothie), with soy milk. Is the Cereal a Kellogs like? It's usually a viable long term choice? I think I can undertand why some of us start with lunch! But I need to break my daily night fast in the morning...
 
Brazilian sick fellow...
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa and Imuran
Blockage - 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 mg Imuran + Iron
 


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 1/28/2010 5:19 AM (GMT -7)   
Welcome! I'm sorry to hear about your long road trip with this disease. I do really hope you find a long remission soon.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


BeeSting
Regular Member


Date Joined Nov 2008
Total Posts : 392
   Posted 1/28/2010 12:05 PM (GMT -7)   
If you like cooking, this breakfast keeps you full for hours:
make oatflakes porridge with cinnamon and some sweetener (saccharin), avoid sugar to reduce diarrhea, , the porridge itself is, if you have it each day reducing diarrhea, cinnamon is reducing inflammation.

Due to fruit and vegetables: fruit is allright for Crohnnies if you either have canned fruits without added sugar, or fresh fruit, but they have to be peeled and really riped, vegetables are also ok, but all have to be cooked untill you're able to smash it with your fork. Vegetables every day will also reduce diarrhea. Just be careful and avoid all long fiber nutrition when fresh.

As for fruits: avoid the white fibrous material on citrus fruits, personally I put a couple of oranges in the kitchen blender and make home made juice without sugar, most fruits are tolerable, incl. apples, pears, peaches, grapes (ripe the pears for a week if hard, when you can eat it with a spoon, they are correct riped).

Most people could tolerate fruit juices, such as orange, grapefruit, cranberry, and apple, and vegetable juices, such as tomato and V-8 juice.

Processed foods: Some processed food are excellent: canned fruits, apple sauce, canned vegetables, baked beans.

Grains: Boiled white and brown rice and pasta. Breads and rolls without seeds, including white, rye, wheat, 5-grains, French and Italian.

Absolutely no seeds of any type - sesame, poppy, rye etc. (but I am sure you already know that ;-)


OK, this is a little list of suggestions, but if you really want to learn how to avoid flares provocated by nutrition, order this book at www.amazon.com:
The New Eating Right for a Bad Gut, written by James Scala, a PhD in Nutrition.

He is explaining why we should care for the K-factor (keep a balanced sodium chlorid and potassium*), avoid diarrhea, avoid flares, how to heal from flares without using the traditional medicines..and this is probably one of the better books out there for people with Crohns/u.c. or other kinds of IBD. Hope this book could help you to help your gut and your over all health.

*just have to explain this typical Crohns imbalance: most of us often get enough sodium chlorid, but we're lacking potassium, eat enough banana, avocado and orange juice every day and your fluid balance will be ok. You'll lose a lot of potassium every day when having watery stools and through urine. You can't get medicine containing potassium that covers our needs, therefore you need to get it through nutrition. A bad K-factor will lead to tiredness, no energy. Potassium supplements can also cause serious intestinal problems./Bee

Post Edited (BeeSting) : 1/28/2010 12:26:50 PM (GMT-7)


Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 1/31/2010 1:41 PM (GMT -7)   
Thanks Bee, that was good information...
 
Brazilian sick fellow...
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa and Imuran
Blockage - 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 mg Imuran + Iron
 

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