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Not your typical Crohns girl

I was diagnosed in January 2013 because one day i couldnt keep anything down and nothing was coming out... found out i had a partial blockage in my small intestine... then BOOM! guess what I have crohns disease but I dont have these typical symptoms... I dont have constant diarrhea. I go once a day in the the morning and more times than not its just fine. I was put on PRednisone to taper off the hospital dose and then now i am on Pentasa* 2 500 mg capsules 4x a day) I was doing fine like I was completely normal and I had been drinking quite a bit lately. Last friday I had ALOT of wine and was severely hung over the next day and ever since my stomach feels so tender, sensitive, and bloats when I eat the smallest amounts. I am still only going once a day but I feel small cramping feelings throughout the day. They arent terribly painful but its like what was that? am I ok? I also dont know what the hell to eat. I am so used to eating whatever I want and going out several times a week. I am so confused. My GI says he doesnt think I am having a flare but something is happening. I go to see him May 8th... I am just kind of waiting to see if I recover and things are just so confusing because its not a constant pain or regular occuring symptoms. I almost dont know what to tell the dr as how i am feeling because its so random. What the Hell is going on!
 

Cat-a-Tonic

Super Moderator
Hi and welcome to the forum. Alcohol does me no favors either so I can relate! Is there anything you've found that you can eat that doesn't set off symptoms? You may want to try the low-residue diet for awhile. Anything that is bland and easily digested is best - things like white rice, white bread (if you can handle gluten), baked chicken or fish, potatoes without the skins, bananas, applesauce, etc.

Another good idea would be to keep a food diary. Every day, write down what you ate, what your symptoms are, etc. That will help you keep an eye on trends over time and would be helpful for your doctor to look at as well. (Click on the highlighted links for more info.) I hope that was helpful - again, welcome to the forum!
 
Hey barbie,

I don't get the big D either, in fact I typically went twice a day BEFORE my surgery 2 months ago but after my surgery I having problems finding a pattern (go figure), but still no bouts of the big D. There is another thread on here where people list their list of triggers, you may find you have some if you think about things you've eaten and how you've felt afterwards. If you have an android there's an app I use that tracks your BMs, pain, stress level and meals daily so you can look through patterns. The app is called "GI Monitor"

Also if you want to peruse the thread with folk's food/drink triggers, the link to the thread is below:

http://www.crohnsforum.com/showthread.php?t=17707
 

Artisan105

Yondaime
No no on alcohol... no no on eating anything you want. Things will progressively get worse if you do that. Go to the forum where diets are explained. I know it won't be easy but this part of the process takes the most effort. Create a journal on what foods gives you pain, loose stools, or makes you bleed. There is a lot of choices or alternatives out there. You just have to look for them, make them, and enjoy them.
 
Perhaps cutting out the alcohol out of your diet and like everyone already said keep a food journal. And eating everything you want is really just a dream...i know i can't anymore.

For me a big nono is spicy foods, fried foods, some types of meat, dairy since i'm lactose intollerant etc....so try and see what works for you...do visit the Diet section and get some ideas of what you can eat and see what works for you...

I know it isent easy but avoiding certain things really do work in alleviating certain symptoms.

Good luck with the doctors visit and i hope you feel better soon.

Xx

Yanet
 
Hi Barbie -- welcome! Sorry you're having trouble... Everyone's disease is different. You will come to know what's normal for you. I agree with yc_angel -- it's helpful to keep a food journal to help identify foods that are problematic for you. But everyone is different! Foods that cause problems for some may be just fine for others. And you may find that alcohol or other foods you enjoy are OK for you in moderation.
 
Hello Barbie,

Welcome to the forum. I know being diagnosed with CD is very overwhelming, especially if you don't have what you believe to be the classic symptoms. Like you I don't have D, was more towards constipated and was very shocked to find out I had CD. I take it one day at a time, trying to get a balance between my CD and diabetes, it's very difficult at times. What did they do in hospital for the blockage?

The food diary is a great idea, also write down how ayou are feeling each day and then you can take the journal with you whan you neat see the dr, it will at least give you something that you can tell him. I now eat quite a bland diet and have found that my symptoms have improved :) It's a good idea to work with a low residue diet and see how it goes. I hate to say it coz I'm very fond of the red wine but you should probably cut alcohol out for a bit, I did and again found my symptoms reduce.

This forum is a great place to come and find out info and the folks are very supportive, keep in touch and let us know how you are.:ghug:
 
after the hospital, they put me on prednisone and then following that pentasa. I went to the dr yesterday and he wants to put me back on steroids for awhile and either try humira, remicade, or imuran. Weirdly enough, after leaving the dr i ate 3 meals *well small ones anyway and i felt just fine... so confused. Today i had a bm and it was a little soft but i again feel fine.... So am i just stressed out from the few days of constipation following the alcohol or am i just having a good day? I have never had blood in my stool or at least blood that is recognizable. I seem to not do very well with red meat and really sweet stuff hurts my belly as well. Obviously getting drunk off alcohol isnt helping either. However, i had been drinking here and there weeks prior to my one night of blackout drunkness that caused a week and half of bloating discomfort constipation and pain. So the steroids script is at the pharmacy but im reluctant to get back on them if im starting to feel good again. I might just keep taking the pentasa and over the next few days evaluate the situation as to if its necessary. also, my dr wants to do tests to look at my enzyme levels. What will that do or say? so new to this and my body is pretty much well perfect besides this cd so its taking alot to adjust to this finicky health stuff and some peoples diet on here just stresses me out just reading it!! I dont have time to be eating such obscure foods nor do I have much desire. I basically stick to turkey and cheddar sandwiches on white bread with a little mayo. I have switched from regular milk all the time to almond but i still tolerate regular milk. I ate granola cereal yesterday. I am staying away from fried foods as well. Its too hard to just dive in to the health food store and act like i know what im doing here.
 
Hey barbie13

It might be your having a good day it might not....but ignoring your doctors orders doesnt realy seem like the right thing to do here....perhaps you should discuss it further with him. Did you tell him about the drinking and stuff?

Allot of us here are new to this dissease...i mean i was diagnosed also in january 2013 and it still blows my mind sometimes how it affects everything i do. Going from a healthy person to being sick all the time isent really what i had in mind...so its an adjustment and that comes with time...accepting it is hard....i have my good and bad days with it...

Some medication and alcohol dont mix so do be carefull with that and try to leave it out all together to see if it has any effect on you if you can.

Don't realy see it as a diet but as a new way of life , of eating and being healty to avoid ending up in the hospital. Going to the health food store might seem strange..gosh i know..i feel like a fish on dry land....but the people who work there are actualy very nice and will help you with everything if you just ask.

Nobody is saying give up everything all together....we're just saying keep track of what you eat...and see if there are any patterns that emerge that are usefull in determening what you should avoid and maybe what you should add to your diet.
And add some variety to your food...to keep it from becoming boring everyday :p

Good luck with the tests and do let us know how everything goes...

Xx

Yanet
 
you're right i should listen to my dr. i dont have any pain but I feel like im pushing my belly outwards so im guessing thats probably inflammation. I will go ahead and take the steroids but im going to discuss further what i should about giving up pentasa all together. I think without the drinking, it was helping me.
 
Hi Barbiegirl, was just wondering how you are doing? It is a good idea to go ahead with the steroids and pentasa, I know it's not really what you want but look at it as a short term thing, take care, keep in touch. :ghug:
 
well i am on the steroids which seem to be going well as far as getting back to normal bms. However, yesterday i kinda ate a little to much and alot of that included bread and cookies.. i noticed later in the evening i started to have some cramping in my lower right abdominon and i felt a hard mass there and i thought well maybe its an ovarian cyst so i went and got a pelvic exam this mornign and they ruled out that and called my GI... I had some blood work done requested by GI on monday for enzymes and my reg doc gave me another lab for blood work to check for infection. I am not in a whole lot of pain but from time to time i feel some cramping... My stool this morning was pretty ginormous but i went again later today and it was narrowed again like how it was before is started the prednisone which i ahve only been taking for 3 days so i think i ate some bad things and also too soon for the my swollen intestine to deal with. I just hope im not facing anythign serious and the steroids take care of it. I just cant stop stressing out. I try to and then something like this happens and im really still confused on what is going on with my body what the hell i should be eating to feel better. UGH!
 
I think it's the unknown nature of Crohns that causes a lot of anxiety, try not to worry too much, it really is very early days since this life was thrust upon you.

It's only 3 days so far on steroids and you have noticed an improvement so that's great, I think your right about why you had troubles after the bread and cookie feast lol, just to soon on steroids for your body to cope, but give it time, how long do you have to take them? I know the diet thing is rather overwhelming, I'm trying to manage diabetes as well and get quite stumped about what to eat. Try to eat a varied diet as much as possible to make sure you get sufficient nutrients. Below is a link to what a low residue diet is, it should help and why not post in the diet sub-forum a direct question: just diagnosed, what should I eat? Good luck :ghug:

http://www.crohnsforum.com/wiki/Low-Residue-Diet
 
Location
ONEONTA,
Barbie i completely understand where you are coming from.. I was diagnosed several years ago, i ignored the dr.s because for the most part i felt fine, no stomach pain, bm's 3-4 times a day but have done that for as long as i can remember.. Tried pentasa three different times now.. No idea why but that caused me to start cramping and feel bloated, i felt worse on that and felt i was better off with nothing.. I went without meds for 5yrs and other than some bleeding i was good.. In decemeber i swallowed the pill camera to try and track down the source of the bleed, again that day i had no pain and felt good.. The test came back showing i had active inflamation in 61% of my small intestine and the dr.'s who always treated me like i was full of it started pushing everything, scare tactics telling my i was working on stricture, and significant narrowing, etc.. Well i just started humira and few weeks ago, apparently i didn't realize how unconfortable i actually was, what i though was me feeling good wasn't exactly good.. The humira has me feeling better than i can ever remember feeling.. I can get on the floor with my son, he can stand on my stomach/jump on me and i don't have to wince w/ pain.. I is really hard to want to listen to dr.'s and even believe there is a problem went you feel fine or atleast think you do..
 
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