Crohns-Newly Diagnosed

[ariel_mermaid]

My name is Ariel, I am 18 years old and I have recently been diagnosed with Crohn`s. At first I wasn't really phased by the diagnosis but now having had a few weeks pass it is slowly setting in. It has been difficult for me to do daily activities, since standing for a long period of time or walking can cause serious stomach pain. I used to enjoy eating but now it feels like a chore. Almost every thing I eat causes me some amount of pain. I have been doing a lot of trial and error with my meals. Fortunately I have stumbled upon a couple safe foods- PC White Cheddar Deluxe Mac and Cheese, tilapia (really delicious fish when baked with lemon and garlic) and pancakes with bacon. Although unfortunately almost everything else gives me a substantial amount of pain. I can handle the pain to a certain degree but a lot of the time the pain is so serve it causes vomiting, which can make it difficult to eat in a restaurant because I am unaware of what may result in a attack. Does anyone else have an excessive amount of vomiting? Because with all the people I know who have Crohn's vomiting isn't a big issue. Also any suggestions on safe foods would be appreciated

Ariel

 

[Mondowicked]

Hi and welcome,
I too was diagnosed when I was 18. It was a frustrating thing to come to terms with. I find low fiber foods are the easiest to tolerate when I am unwell. Things like cream of wheat, eggs, eggos, and pasta are all regular parts of my diet. I did get allegy tested for foods, and they discovered that I don't do well with yeast. Keeping a food diary can help because some foods didn't make me feel bad until a few days later. Finally, protein shakes (Ensure style or homemade with a protein powder) helped me keep my weight up. Good luck!

 

[Arielsmom]

It's good to see you opening up about your disease and getting advice from others!

 

[ariel_mermaid]

Thanks for the advice

 

[Tesscorm]

Hi Ariel,

I mentioned Enteral Nutrition to your mom (which my son did/does). But, the initial treatment is no food, the formula only, and then food is gradually reintroduced. I realize you aren't 'reintroducing' food but his reintro diet began with the 'easiest' foods first. You might want to try a similar approach and see if you can identify what bothers you. His reintro diet was broken down into stages and each stage was to last 3-5 days (or as tolerated):

1. White foods (low fibre/residue) - white bread (any type), pasta, rice, plain crackers, plain cereal (no milk), etc. He was allowed a little bit of toppings (ie butter, low fat cream cheese, etc.)

2. proteins - any type but we stuck with eggs, chicken and fish

3. soft fruits/veggies - no skins, seeds or membranes (the skin around orange segments)

4. low fat dairy

5. All else as tolerated. For 'questionable' foods like beans, steak, etc. I gave him a bit the first time and, if all went well, more next, etc.

He was told to always avoid seeds, nuts (smooth peanut butter is fine, just not pieces of nuts), popcorn and minimize fruit/veggie skins (although many people eat fruits/veggies with no problem???).

Good luck!

 

[Scaryman]

Ariel,

The thing with Crohns is diets you'll find are unique to the individual. Dont get overwhelmed with the tons of diet advice. I found a low residue diet works for me. For example: if it's not mush by the time you swallow don't eat it. Like celery, fruit skins, potatoe skins etc.

Just convert to chewdism, peanuts become peanut butter, apples without skins become apple sauce. Baby food works at times as well. We are here if you have questions. You'll find A few thousand people (I think it's that high) on this forum who've been in your shoes.
Welcome aboard we are friendly and kind but nutters in our own way.

 

[ariel_mermaid]

Tesscorm, thank you I will definitely try breaking down my meals into stages and see what works and what doesn't

 

[Amanda D]

Hi Ariel,
I too was recently diagnosed (June) with Crohn's and I really admire your strength to seek out advice and support. I have also struggled a lot mentally and emotionally although I remain optimistic almost all the time because there are medications to help us feel better, even if they haven't kicked in yet. I really feel for you vomiting so much, I have not had that problem. But I have severe pain in my gut that just will not subside. My doctor prescribed pain medication for it (and my head and legs; I guess those are effects of drugs, not sure). I too get a lot of pain in my gut and legs after standing or walking for long periods of time. That is so frustrating because I am usually a very active person. I have learned to recognize my limitations though and minimize my "outings."
As far as food goes, I am going by trial and error and so far haven't found anything that I can't handle. But I too feel like eating is a "chore" and I fear how it will come out of me (bowel movements have really hurt which is the opposite problem I had before starting prednisone when I had diarrhea all the time, sorry, tmi). I eat very small portions of everything, just in case.
Thankfully I too have a supportive mom. Even though I am 32, my mom has been living with me since I got really sick in June and I am so blessed to have her helping me!

 

[David]

Hi Ariel and welcome to the community

I like that tesscorm covered enteral nutrition as I think that's a wonderful option.

As for what other foods are safe, that's hard. I say that because a food not hurting right away or even within a few hours doesn't make it safe. What that means is it's irritating your already inflamed intestinal tract or maybe you're allergic or sensitive to it.

Sometimes foods can be doing a lot of harm but you can't tell right away. For example, potatoes have glycoalkaloids which can leads to increased intestinal permeability, especially if they're fried. Or if you're sensitive to gluten, it might not hurt immediately but, for example, might be damaging something called your [wiki]villi[/wiki] which leads to digestive and absorption problems. Or you could be eating foods that are contributing to intestinal overgrowth. OR you might not be eating foods that are high in nutrients your body so desperately needs.

That's part of the reason I'm a huge fan of enteral nutrition. I'm also becoming a bigger and bigger fan of juicing. And transitioning to either the paleo diet or specific carbohydrate diet can be beneficial for many, in my opinion.

It's tough for sure and can be so frustrating at times. It's not fair that our diet has to become a scientific experiment

Again, welcome to the community!

 

[ariel_mermaid]

Amanda D- Thank you for messaging me, I really appreciate the advice and support :ysmile: I was a fairly active person before as well. It sucks that going grocery shopping, or going to the movies becomes a chore because of the amount of pain that occurs. Well hopefully you don`t come across any foods that cause you to have a bad reaction. That is one thing I haven`t really had, diarrhea hasn`t been an issue for me, at least not yet... That is great that you have a supportive mom :ysmile: it`s always nice to have someone there for you. Anyways I really hope you are doing well, take care.

Ariel

 

[ariel_mermaid]

A couple people have mentioned enteral nutrition, I think it would be a good thing to look in to. People seem to have great results with it. I have had only a couple instant pain reactions. For example spaghetti not a good food to eat. Feels like hot spears poking at my insides, not a pleasant feeling. I seem to be okay with potatoes which is nice :ysmile: Well thank you very much for the message! Hope you are doing well David. My mom and I love the line ``It's not fair that our diet has to become a scientific experiment``because it`s SO true. Anyways thanks again, take care.

Ariel

 

[michaelearnest]

Its amazing how certain foods cannot be eaten by some Crohns people and then some it can. I love pasta and eat it all the time, doesn't bother me. Thats why it is very important with Crohns to keep a daily log of the food you eat.