Cannot eat anything anymore and I am at my wits end!! HELP

[ReneeCedeno]

I am new here, so I will tell you a little bit about me. I was diagnosed with CD in 2011 and it was so bad at 21 years old, on April 10th 2012, I had to have my first surgery. I was on the Humira shot for awhile and I stopped taking it when I got pregnant in Sept 2013 (big mistake) I ended up getting food poisoning and then I had a horrible flare immediately afterward which I had to take prednisone at the end of my pregnancy and I ended up having my son early because of it. I has on Humira afterward but stopped because I ran out and I no longer have Tricare prime and cannot go to Walter Reed. They have one of the best department just for Crohn's and IBS...

I have Medicaid now... I heard they don't cover a lot of stuff dealing with Crohn's in Virginia. (Not sure the truth to that)

I had bleeding from a fistula or a fissure for about a year...(stopped in October 2014) I thought I was getting perianal Crohn's.

Now....

I cannot eat sooooo much food...

No salad, greens, cabbage any ruffage. Seeds, cannot have too much fruit. Broccoli is out. Skin of fruit is a no-no. Just learned that my favorite food steak is my arch nemesis. Nothing with a lot of fiber, fast food is okay but my "stool" (tmi sorry) is like rocks so I avoid that kind of food like the plague....whole wheat everything is a death sentence to the toilet!

The list is so long!!! I forget about some food until it's too late or I am discovering a new culprit every week. ITS
DRIVING ME CRAZY. It seems like drinks bother me too now. Soda I have to give up. coffee I should give up but I will never do such a thing. I quit smoking and drinking. (Except wine)

I am trying to lose weight because I gained a lot of pregnancy weight BUT how can I lose weight if I cannot eat the healthy stuff? I barely eat because I am scared I will flare up and still no significant progress. I need help and advice!

I am too the point I just want to die from my illness....it's so severe, I am bedridden for days. My intestines and stomach will seize up and I won't eat for a couple days. I get so sick I can barely take care of my son and I am single mother. I am so over this!

I am glad I found this website! I need to talk to people that deal with this horrible disease!

 

[ReneeCedeno]

I guess I cannot get any advice on how to control the flares... Here either. No one understand what I am going through and I was hoping I could get some support on here....

With the exception of DJW! Thanks

 

[hugh]

Sad to hear how much you are suffering......

No-one can tell you what will work.

Juicing (fresh at home) is a good way to get nutrition without fibre, but some juices will not be tolerated well (i would avoid all fruit juices and only juice vegetables ).
Bone broths are another way to gain nutrition..
Peeling and well cooked vegetables are better tolerated than raw.
Totally eliminating gluten MAY lead to an almost instant improvement (does for many but i did hear one person who said she had no improvement but got worse when she tried to reintroduce wheat)

Fodmaps[1] is an interesting take on the way different carbohydrates ferment in our intestines and may be a useful tool in identifying what is tolerated and what isn't.
It can really help with symptoms

Many people have some good results with Paleo/SCD/GAPS[2] diets, but others do not..
Read up on them. SCD and GAPS do not suit everyone but the intro diets is a good way of eliminating foods and reintroducing them to test for reactions.

Paul Jaminet has an interesting view of IBD[3] and might be worth investigating.......
It's called the perfect health diet and is based on paleo but allows carbs and is easier to stick to than "old school paleo"

[1] Fodmaps podcast - easy to understand explanation
http://scdlifestyle.com/2012/09/dr-...rt-and-science-of-the-fodmap-diet-podcast-45/
[2] Want to know more about Paleo?
http://www.crohnsforum.com/showthread.php?t=48559
[3] Perfect Health Diet - Gut Issues (part one of 4)
http://perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/

 

[DJW]

So sorry you're suffering so much. I went through that a lot when I was first diagnosed. This disease is so individualistic it can be difficult to find remission. Hugh has given you some great info.

I'm no expert on diet. I'm working to eliminate all processed food and sugary stuff from my diet. I hand relized the difference until I cheated one evening and was running to the washroom 3-4 times during the night. I also felt rotten.

Sending you my support.

 

[UnXmas]

Hi, you can lose weight without eating the "healthy" fruit and veg and whole grains. You can simply reduce the amount of food you eat, so although what you're eating is high calorie, your overall calorie intake is low. There are also some low calorie foods you may be ok with - have you tried tinned fruit, smooth vegetable soups, bananas, tinned carrots, avocados, pureed apple? These are low fibre, so if it's fibre that's causing you problems with other fruit and veg, these should be ok. Also refined grains don't differ much in calories from whole grains: white rice, white bread, low fibre breakfast cereals like cornflakes and rice krispies, these don't differ much in calories from their high fibre counterparts. And try other smooth soups (chicken, any kind really, soups are generally low in calories), fish, yogurts, potatoes without skin, eggs, white meat, these don't usually cause many problems.

 

[SoOoO CoNfuSeD]

hi, i'm sorry to hear that you're feeling so lousy. I too was once at a point where my body would literally not absorb anything i put in it... healthy foods or not and i was just so hungry and confused. I have one word for you: JUICING! It saved me. there's a lot of information about it here and there are so many recipes available online. You still get your essential nutrients, with out those fibers that our guts can't handle right now. it is a lot of work, but so worth it. Be patient, but if u begin juicing regularly you will definitely begin to feel better. Not to mention, it's a good way to help keep the weight off. Good luck! And hope this helps.

 

[Tuff]

I'm sorry you're having such a hard time. I've been struggling with Crohn's for four years now, and I've gone through times when there were very few things that I could eat. The only thing that works for me is medication that puts me in remission, and then I can eat a normal diet pretty much, albeit a low fiber one still. What medications are you on now? If you're having that much trouble with food, your intestines must be inflamed or abscessed. Have you had a colonoscopy? It will not get better on its own. You can try different diets and see what helps, we're all responding differently to different things. I'm a vegetarian on a low fiber diet.

 

[happy]

Hello Renee,
Welcome to the forum. So sorry to hear about your struggles to eat.
You may wish to research liquid diets, called enteral nutrition, that may help you get the proper nutrition while you seek out other treatment. You can just go with over-the counter products such as Ensure if they work for you, or you can go with a prescription product. You still should be monitored by health professionals no matter which products you choose to use. There is some info about them on the forum: http://www.crohnsforum.com/showthread.php?t=23607

May you soon be feeling better.

 

[lilac]

sorry to hear your in so much pain - only thing I can suggest is liquids. I turn to complan, modulen, custard (sugar-free) or jelly (sugar free). Hope you get relief soon!

 

[ReneeCedeno]

I use to take humira. Am 24 and my mother cut off my insurance so I have medicaid now and I heard I have to pay out of pocket for a lot of things deaLing with IBM and crowns because it's a chronic illness. I already have had one bowel resection when I was 21. I have had 5 colonoscopies and one endoscopy... My colon is pretty banged up. everything is giving me the bubble guts. I am going only fish for now on and I have cut out all sweets excep cereal.

 

[ReneeCedeno]

Thank you for the suggestions and advice!

 

[UnXmas]

I use to take humira. Am 24 and my mother cut off my insurance so I have medicaid now and I heard I have to pay out of pocket for a lot of things deaLing with IBM and crowns because it's a chronic illness. I already have had one bowel resection when I was 21. I have had 5 colonoscopies and one endoscopy... My colon is pretty banged up. everything is giving me the bubble guts. I am going only fish for now on and I have cut out all sweets excep cereal.

Sweets may not be too much of a problem for you, though that depends what you mean by sweets.

When you don't have a healthy digestive system, you sometimes have to learn to ignore certain kinds of healthy eating advice, as it doesn't apply to you. When you keep hearing messages about what is and isn't healthy, it can feel wrong to go against those messages, you may have to remind yourself that you're different: e.g.fibre may have more negative consequences for your health than it does positive. I think one of the main reasons whole grains are promoted as healthy is precisely because they're high in fibre. Good for the majority of people with healthy digestive systems, but may well not be for you, at least for the time being. Like.... we know exercising is healthy, but it's not going to be healthy for anyone to exercise right after a major surgery. That's an extreme example, obviously but medical conditions change things.

If by sweets you mean sugary things, they're certainly not good to eat too much of, but foods that are more carbohydrate are lower calorie than fatty foods, and you need to eat something. White rice, white toast, things like that may be easy on your digestive system, and no higher in calories than whole grains. Fish is a good idea, but not as your only food!

Have you joined the low fibre/low residue support group?

http://www.crohnsforum.com/showthread.php?t=50340

There's a lot of good information there about how to eat a healthy, balanced diet that's low in fibre.

I hope you'll be able to get some better treatment for your disease. Diet can only get you so far, but if you can get your disease a bit more under control, you may be able to tolerate more fibre again, more steak too! Fibre can't be the issue with steak, maybe it's just too rich/fatty for you to digest at the moment? Fish, white meat and dairy (if you're ok with lactose) may be better.

And sometimes it seems that eating anything can make you feel worse, so you shouldn't necessarily give up every food you feel worse after eating. You don't want to restrict your diet too much, especially over the long-term. Look for the foods that consistently cause the worst reactions, and avoid those. If you're really desperate, a liquid or very soft, bland diet for a few days may help settle things.

 

[alex_chris]

Hey Renee, as people said above, food is so individual specific. Some people told me foods they could never ever eat and I said, really? And then I tell them something that is really, really bad for me and they say, they can eat it no problem.

Here are some things that do not work for me: raw onions, cooked onions or any form of onions. I shouldn't even smell them or touch them... :batty:, brownies or any cookies with very fatty and high sugar chocolate, oily pizza or other very oily food (especially when reheated) etc.

While here are some foods that others seem to have problem with and I never had: salad, cucumber, tomatoes, lentils, spicy soup, white bread even if fresh (baguette), black tea, steak etc.


Anyway, I know there are tons of forum threads with recipes and suggestions for food. One thing I see people leaving out for the most part is combinations of food items. In the many years of Crohn's, I have figured out certain foods work different with me when eating it in combination. You said you love steak. Well, I do too. But having a large, fatty steak with a baked potato with sour cream will also get me into trouble, but a small or mid-sized filet mignon together with some cooked carrots and rice or bread or cucumber salad, works perfect for me.

Also, have you looked into liquid supplemental nutrition? They do not taste well at all, but when you got problems with really many foods due to having an active disease episode, this works wonders.

One other thing, for many years I sort of felt sorry for myself that I could not eat certain things any more until I realized it really does not matter. The point of that realisation was key to also eat well and thus through food elimination help to keep my Crohn's disease under control.

 

[DJBHeat]

When I was going through my problems with Crohns, sticking to liquids always worked for me. I can't tell you how many soup variations I learned to make lol. As mentioned above, juicing and supplemental shakes are great as well. Feel free to contact me if you want some ideas or specifics

 

[Blackbat]

Yes I've had to give up alot of food, I even had the problem that one scrambled egg would be fine the next put me double over in the bathroom with stomach cramps and the best that I have foudn it sometimes what makes me sick goes all the way back to what they fed the chickens. I've found that alot of the modern preservatives set me off. Ive had to go to taking the time to make things from home, talking with the local growers, and finding out who does what with the food before you get it. Ruled out alot of the differences, and over the year have managed to make things alot more sensable. It takes time. Stable your crohns first as best as you can (yeah that laughable) but then research and try things. in small quantities and see if its the item or maybe how than item was processed before you get it.

 

[jazzygirl52]

I am new here, so I will tell you a little bit about me. I was diagnosed with CD in 2011 and it was so bad at 21 years old, on April 10th 2012, I had to have my first surgery. I was on the Humira shot for awhile and I stopped taking it when I got pregnant in Sept 2013 (big mistake) I ended up getting food poisoning and then I had a horrible flare immediately afterward which I had to take prednisone at the end of my pregnancy and I ended up having my son early because of it. I has on Humira afterward but stopped because I ran out and I no longer have Tricare prime and cannot go to Walter Reed. They have one of the best department just for Crohn's and IBS...

I have Medicaid now... I heard they don't cover a lot of stuff dealing with Crohn's in Virginia. (Not sure the truth to that)

I had bleeding from a fistula or a fissure for about a year...(stopped in October 2014) I thought I was getting perianal Crohn's.

Now....

I cannot eat sooooo much food...

No salad, greens, cabbage any ruffage. Seeds, cannot have too much fruit. Broccoli is out. Skin of fruit is a no-no. Just learned that my favorite food steak is my arch nemesis. Nothing with a lot of fiber, fast food is okay but my "stool" (tmi sorry) is like rocks so I avoid that kind of food like the plague....whole wheat everything is a death sentence to the toilet!

The list is so long!!! I forget about some food until it's too late or I am discovering a new culprit every week. ITS
DRIVING ME CRAZY. It seems like drinks bother me too now. Soda I have to give up. coffee I should give up but I will never do such a thing. I quit smoking and drinking. (Except wine)

I am trying to lose weight because I gained a lot of pregnancy weight BUT how can I lose weight if I cannot eat the healthy stuff? I barely eat because I am scared I will flare up and still no significant progress. I need help and advice!

I am too the point I just want to die from my illness....it's so severe, I am bedridden for days. My intestines and stomach will seize up and I won't eat for a couple days. I get so sick I can barely take care of my son and I am single mother. I am so over this!

I am glad I found this website! I need to talk to people that deal with this horrible disease!

I have Crohns now.. had Colon Cancer and had my large intestine removed so that changed my diet as the intestine is responsible for absorbing liquids and consolidating poop so to speak. So I was on a mix of Citracel Fiber Powder drink 2x a day and Immodium 3x a day to regulate the consistency and reduce the frequency of my poops.

I also did not do well with any veggies, fruit, red meat, fried food. They went right thru me. I even tried mango sorbet and it went thru me.

I am lactose intolerant so no dairy.

I cant drink carbonated sodas or it makes me too gassy.

Also found out I was sensitive to Gluten about a year and and half ago.
So only GF breads, cookies, pasta,pizza, frozen foods within the confines of no veggies, no fruit, etc.

When I stick to that it's good.

It sucks. But gotta tell you, I just started Humira almost a month ago and my system is even better.

I

 

[Nancye50]

I'm glad you're here. You're getting good diet advice.
You need to go to the doctor and figure out what your options are for medicine. Stop being discouraged by what you hear and become your own advocate. Humira has an assistance program. Get some medical attention and get this flare slowed down. There probably aren't any truly safe foods right now. Almost definitely nothing that you can savory eat over and over again.

 

[Nym]

It seems like drinks bother me too now. Soda I have to give up. coffee I should give up but I will never do such a thing. I quit smoking and drinking. (Except wine)

Do some research on acidosis and acid-forming foods. Meanwhile, make a big batch of highly nutritious bone broth meat / fish stew. No onions, no veg. No sugars. No wine. No snacks. No grains unless they are fermented. Great for your child as well. Eat small portions when at room temp. Nothing hot or cold.

Try keeping calm. ♥

 

[jazzygirl52]

Chocolate can be an irritant but I love it and must have some every day coffee... limit it but love it. Rich foods/heavy foods not for me. No soda...bubbles. I dont do dairy and am GF but no veggies...kind of boring but every now and then I try a little off the norm and see how it works.