After all these years, I still can't figure this out!

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Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 7/7/2009 2:59 PM (GMT -7)   
I went out to dinner last night. I was really good. Didn't eat anything that was out of my usual comfort zone except for 2 small bites of salad. I expected to pay for it last night since lettuce goes through me at a rapid pace. NO pain last night, no pain this morning. Felt fine all day, but I wasn't hungry, so I didn't eat. Then BAM! Pain hit about half an hour ago, which is almost 24 hours after the offending food, which I'm sure is already out of me. I just can't figure this disease out anymore. When I think something is going to bother me, it doesn't, and then when I haven't eaten all day, I get incredible pain out of nowhere!
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.....


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 7/7/2009 3:41 PM (GMT -7)   
Same with me, the "D" hits me all of a sudden even days after I eat food out of the ordinary. I cannot figure out this darn disease for the life of me.


Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Protonix,  Monthly B-12 injections.

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


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 7/7/2009 8:49 PM (GMT -7)   
Over the years I must have kept a dozen food diaries and with them brought the realisation that I still couldnt tell what upset me 'foodwise'. The only things I did find was what bloated me and what came out 'as is'
I figure I will NEVER figure this disease out!
Jo

Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 7/8/2009 5:44 AM (GMT -7)   

I'm right there with you.  Last night a small salad and some sushi (the seaweed is not my friend). 

Nothing happened...not even a little cramp.

Feel pretty good!


Susan
 
28 years with Crohns in the term ileum.  Feb 07 Resection.  Apriso, Align and possibly going back to Entocort.  Currently pregnant!


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 7/8/2009 9:20 AM (GMT -7)   
Yeah, I huff and puff a little whenever I hear someone going on about "keeping a food diary", and "introduce items to your diet slowly" and so forth. It is wise advice, to be sure. But some of us know it is also a joke. Lol.

After weeks of D, I went back ON gluten, and had the most formed stool I've had in weeks. Completely backwards. I give up too. lol.
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. Leaning towards Failure there too.
Currently on:
Cimzia (started 2-12-09) Again, not helping much, if at all.
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Feeling a bit jaded lately, but trying to keep my chin up.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/8/2009 9:55 AM (GMT -7)   
Yup, pretty sure I have a blockage. Which is relatively normal for me. But, dinner out caused no ramifications, then I didn't eat for a whole day and get a blockage, go figure.
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.....


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 7/8/2009 9:59 AM (GMT -7)   
For the average person it can take up to 3 days to completely clear out what you've eaten, so whatever you eat today should make it's reappearance in about 3 days, everyone's motility varies though...throw crohn's into the mix and it's anyones guess how you will or won't react, chalking it up to the nature of the beast.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


Lili_Enigma
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 7/8/2009 2:07 PM (GMT -7)   
Oh no, you're scaring me! shakehead
 
I've only been at this since February, i thought I couldn't figure it out because I was so new at it! I keep getting fed up and just stop eating for a few days. I have decided the only things consistently safe are chicken, white bread, soda crackers and ginger ale. Between that and Ensure, that's pretty much what I am living on right now. :) I find that things that I could eat yeaterday, I can't today. my "safe" list is getting smaller and smaller! I can't have any fruit or veggies at all (I'd kill for a ceasar salad right now!) and no fiber more than 3g per meal or 10 g a day max or I block my intestine. *sigh*
 
Can I ask... do you guys have this problem just when in so called "flare ups" or always? I think I am in denial... everyone keeps telling me I will be able to eat whatever I want once my flare up is in remission (which it is showing no signs of doing 40 lbs lighter) but I haven't heard a single doctor or person with Crohn's say this yet... will I have to eat like this permanently now?
 
Signed: New Confused Crohnie

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4097
   Posted 7/9/2009 12:00 PM (GMT -7)   
I have become a little food phobic. Every time I don't feel well, which seems to be often lately, I cut out food I have recently eaten. I have noticed over time, that there are more and more foods on my bad list. I will admit to being guilty of sometimes starving myself for big chunks of the day, because I prefer the feeling of hunger over the pain that sometimes comes when I eat. I too, have kept many food diaries, but I don't feel confident that the conclusions I make are scientific or accurate! I have not yet tried going completely gluten free, but I am considering it. My doc thinks that because I am mostly constipated, without anemia, that it is more IBS than the crohn's being active, but I don't know. I do think probiotics help me somewhat, but I find I can't even take those every day or I have problems. I'm on my third brand of probiotics. This whole stupid disease is maddening, especially because I consider myself a very analytical, logical person, and I can't make sense out of anything!!!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation


Lili_Enigma
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 7/9/2009 9:19 PM (GMT -7)   
I was actually misdiagnosed as Celiac and went gluten free for many years... I actually lost weight and was pretty sick even then. I went down to 100 lbs (I'm 5'7) and had a biopsy done again because I felt that even though I felt better gluten free, i still didn't feel well. It showed that I wasn't Celiac, so I was told to go ahead and eat gluten again. for years I would sometimes go gluten free voluntarily when I had a "sick time" (which I now know to have been CD flare ups!) to help get through it. It did help, but I always ended up fasting completely in the end to get through it once and for all. I don't think it was the gluten so much causing me the issues, as that the gluten-containing foods tend to be the processed, high carb, high fiber foods that tend to hurt anyway.
 
I also do tend to avoid eating most of the time when I get sick from eating, always have. I've been as low as 85 lbs when I was really sick and couldn't get through the sick period while still eating. I really wish I had a good doctor then that realized I had Crohn's so i didn't have to suffer like that! Now at least I am making sure i drink Boost or Ensure and eat lean meat, as I can tolerate that much at least.
 
Maybe we need a Food Phobics Support group! LOL
 
I really hope I get the food list figured out, I don't want to end up permanently afraid to eat...

Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/9/2009 10:41 PM (GMT -7)   
The process is complicated by several things, including the time for food to reach your sensitive area in the gut and how much of the offending foods you eat. In addition, there are at least two types of irritant - a food allergy or sensitivity and reactions to bacterial growth from eating an excess of foods that feed the bacteria and are not broken down by our digestive process. Most starches are incompletely digested, so eating a lot of starch ends up feeding bacteria. There are also problems from simple mechanical abrasion from foods like wheat bran and other fibers. This also depends on whether the fiber is mixed in other foods that cushion it or if it is uncushioned and thus more scratchy (that's the scientific term for it ;>). For people with strictures, this can also apply to food that has not been chewed enough (like cauliflower) which then has trouble passing the stricture. As you can see, there is potential for combinations of these problems, so sorting out the cause is more an art than a science.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 7/10/2009 5:08 AM (GMT -7)   
For me, transit time it not usually an issue. It can be an hour for something that "offends" my system (lettuce) to 8 - 10 hours. So I usually know what has bothered me, or at least what meal. For this episode, 3 out of 4 of us who ate out all felt off for a few days. So I guess I just got a little worse than the others because I have an actual IBD. Eventhough the food was out of my system, it had upset the balance.
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.....


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 7/10/2009 11:25 AM (GMT -7)   
I think the Food Phobics Support Group hits a little too close to home for me!!!! Lol.

I love food, but my body hates it - that's what I say.

Lil' E - don't let us jaded folk scare ya!

Yes, you will probably always have some "no-no" foods. But, as you will see from hanging out here - most of us still suffer moments of weakness and consume those no-no foods anyway too...((shrug)) You learn to pick your battles, I guess.

BUT - keep in mind that no matter what anybody says, nobody really knows JACK-DIDDLY about YOU and what foods YOU can eat. You're already light years ahead of many in figuring out what bugs you (I'm a no-processed/chemical crud person myself). When I'm not in a flare, I find that salads are light years better for me than burgers and other more "processed" options. But when I'm in a flare... salads are off limits.

You'll have a Cesar again someday!
27f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade '05 through '08, with no other maintenance meds (ah, those were the days, eh?)
Tried Humira. Failed. Tried Gluten Free. Leaning towards Failure there too.
Currently on:
Cimzia (started 2-12-09) Again, not helping much, if at all.
Probiotics, Digestive Enzymes, Forvia vitamins, and calcium chewies
Feeling a bit jaded lately, but trying to keep my chin up.


HabsHockeyFan
Veteran Member


Date Joined Jan 2006
Total Posts : 3130
   Posted 7/10/2009 2:01 PM (GMT -7)   
Aaah balance...I caught that word in your last post Zanne. That seems to be my key word too. I am a big proponent of food diaries for new to Cd folks. it did help me, but mine was a little more detailed. I kept more than a good/bad list.
But that balance....wow it never seems to come at the right times. I am on pb's theory of 3 day affects. I have some foods that affect me instantly and other that wait a day or two to haunt me...lettuce is always a lag of a day or two. cashews and red meat....give me less than an hour and I can feel the "ghost of foods" past come around.
It is always a balance of how many days have I felt good with what am I planning to do in the coming week before anything goes in the tummy.

And for you newbies....yes there are those of us long term folks who are still figuring things out. please don't let that scare you. instead take reassurance from the fact that we have lived with this DD this long even though we haven't quite pinned it down yet.
Dx'd '90 (emergency rupture), symptoms ignored long before that, '03 fistulas and bad flagyl reactions, B12 weekly, Pentasa [until I surrender to the bigger meds]
I'm riding on the escalator of life....


Lili_Enigma
Regular Member


Date Joined Jul 2009
Total Posts : 24
   Posted 7/10/2009 3:49 PM (GMT -7)   
Thanks guys, I really appreciate the support... it really helps! I'm still doing the food diary, and I am hopeful my strict and limited diet is temporary...I miss my fruit and veggies! lol Maybe once my GI figures out this blockage it'll get better...at least now I have the CD diagnosis, that's the 1st step right? he he he  
 
for now I guess I'll keep my chin up and my Ensure in my hand! Cheers!
 
I'll be looking forward to that Ceasar salad! wink
 
 
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