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Crohn's Disease Forum » Your Story » Just starting out, CD, help appreciated


 
07-06-2015, 09:52 PM   #1
ScottieXx
 
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Just starting out, CD, help appreciated

Hello, my names Scott, I am 19 years old and i've been suffering with Crohns disease for years now, and i just finally got diagnosed with Crohns. It took about 1 year for them to figure it out, at first they were almost 100% sure that it was IBS and that i surely dont have to worry about CD. They had me on IBS medication that only made throw up every time i took it. When they finally figured it out, they put me on Pentasa, it seems to help with preventing actual flare ups but i can tell when i "should be" having a flare up. Its very difficult trying to find food that doesn't hurt my belly. Seeds,nuts, any dairy(raw cheese does not hurt me), raw fruits and vegtables, gluten, oily foods, beans, amoung others hurt my belly, and i find it very difficult to find things that wont. One of the only fruits i know that wont hurt me is Mangos. I'm also a vegetarian(have been for about 6 years) so you can see how difficult this has become. My doctors have been very slow to help me so im trying to do the best i can without have a total melt down every other week. Any tips, tricks, hints, any help at all with information would be amazing and so helpful. Also help with finding how to maintain staying full and energy levels.

Last edited by ScottieXx; 07-06-2015 at 10:10 PM.
07-06-2015, 10:38 PM   #2
Lady Organic
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Hi Scott and welcome,

I was pretty much a vegan last year. However, I had to change my mind on that subject because I had decided to explore cutting legumes and needed to take some proteins to replace them. I have then decided to go back to eating fish and sea foods. I am not in full peace with this decision but I chose my health over my conscience.
do your blood test, fecal calprotectine or biopsies indicate remission? If not and if you still feel on the fence, pressure your dr for other treatments. pentasa is first line treatment and other options are possible if inflammation persists. it is also not impossible to have both IBS and CD. best wishes.
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

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past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
07-06-2015, 10:46 PM   #3
Tuff
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Hello and welcome to the forum.
Do you eat eggs? They're very versatile. Have you tried cooked fruit, or pureed, or even baby food jars. I can eat canned pears, and bananas and melons. I've started eating a lot of Asian food. Miso with udon noodles. Spring rolls, fried rice, stir fries. I was vegetarian, but have been eating chicken lately, because I haven't been getting enough protein. I eat a lot of potatoes and pasta, and noodles. Cottage cheese. Greek yogurt. Bagels and cream cheese for breakfast. Peanut butter and nut butters, buy the kind without icing sugar. Have you had your vitamin levels checked? Even a daily multivitamin can help. I have several smaller meals throughout the day.
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07-06-2015, 10:56 PM   #4
ScottieXx
 
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Puree is good, i tend to buy baby food alot, when i eat fruits and vegggies they have to be organic, non org usually uosets my belly a little more. I think ive had my vitamin levels check a fee times this year and its usually fine except low iron.
07-06-2015, 11:59 PM   #5
POTTYTIME!
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You might have to rethink meat. I eat alot of fish on rice or fish with a baked tater. I steam my veggies. But I only eat squash, zucchini, carrots. I can only eat butter lettuce. Stay away from fiber. Stay away from red sauce. Biggest thing is that everyone is different. Whats good for me, may not be good for you.
07-07-2015, 07:45 AM   #6
ScottieXx
 
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You might have to rethink meat. I eat alot of fish on rice or fish with a baked tater. I steam my veggies. But I only eat squash, zucchini, carrots. I can only eat butter lettuce. Stay away from fiber. Stay away from red sauce. Biggest thing is that everyone is different. Whats good for me, may not be good for you.
One of my biggest worries was having to start eatting meat of some sort again... And what do you mean by red sauces ? Ketchup and BBQ type stuff?
07-07-2015, 08:12 AM   #7
POTTYTIME!
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Spaghetti sauce mainly. Pizza sauce. Red sauce on mexican food. I can eat ketchup in moderation.

Like all of us said though, you maybe able to eat it. Its all trial and error. But the tomato products has tons of acid. If it cramps you up after eating it, it will give you a flaming ass when you get rid of it.

Bb-q sauce in moderation also
07-07-2015, 08:32 AM   #8
ScottieXx
 
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Spaghetti sauce mainly. Pizza sauce. Red sauce on mexican food. I can eat ketchup in moderation.

Like all of us said though, you maybe able to eat it. Its all trial and error. But the tomato products has tons of acid. If it cramps you up after eating it, it will give you a flaming ass when you get rid of it.

Bb-q sauce in moderation also
Usually ketchup gives me terrible heart burn, like only a tiny but feels like gonna start spitting acid like off of Alien. I recently bough an ORGANIC ketchup and i actually have had no problems every time ive used it. Spaghetti sauce is an "i dont know" type of thing, theres been a couple times where its upset my belly but other times thats the last thing that would be hurting me, i dont eat it often though.
07-07-2015, 08:45 AM   #9
POTTYTIME!
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I hope you can get a plan you like. Just be mindful of veggies. Some have alot of fiber and can cause alot of pain, pressure, and bloating. I used to love steamed broccoli and cheese. Broccoli is loaded with fiber. Alot of fish, chicked, rice, and taters.
07-07-2015, 08:59 AM   #10
ScottieXx
 
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I hope you can get a plan you like. Just be mindful of veggies. Some have alot of fiber and can cause alot of pain, pressure, and bloating. I used to love steamed broccoli and cheese. Broccoli is loaded with fiber. Alot of fish, chicked, rice, and taters.
Thank you i hope i can too, it beens hard. But as well, do you know which veggies i could or couldnt stay away from? I know its different for everyone but its also nice to know where to start looking and not looking
07-07-2015, 09:12 AM   #11
POTTYTIME!
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I eat: yellow squash, zucchini, carrots, potatoes w/o skin, onions wrapped in foil on the grill, and Butter lettuce. The squash and zucchini, I put on the grill, steam, or boil in chicken broth. Also the only seasoning I use is very little salt, pepper, garlic and onion powder. I cant eat any spicy food. Cant eat iceburg or anyother type of lettuce except the butter lettuce. They have loads of fiber in them.
07-07-2015, 09:37 AM   #12
ScottieXx
 
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I eat: yellow squash, zucchini, carrots, potatoes w/o skin, onions wrapped in foil on the grill, and Butter lettuce. The squash and zucchini, I put on the grill, steam, or boil in chicken broth. Also the only seasoning I use is very little salt, pepper, garlic and onion powder. I cant eat any spicy food. Cant eat iceburg or anyother type of lettuce except the butter lettuce. They have loads of fiber in them.
So i should probably stay away from spinach as well, i think i may go out and try some of this zucchini. This may be weird but i have never heard of butter lettuce :O
07-07-2015, 09:44 AM   #13
POTTYTIME!
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I didn't either until I started reading up on this disease. You can goggle "crohn's diet". Now everyone will say something different and it will also say, " there is not a true crohn's diet". That is because everyone is different.
07-07-2015, 11:28 AM   #14
ScottieXx
 
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Hi Scott and welcome,

I was pretty much a vegan last year. However, I had to change my mind on that subject because I had decided to explore cutting legumes and needed to take some proteins to replace them. I have then decided to go back to eating fish and sea foods. I am not in full peace with this decision but I chose my health over my conscience.
do your blood test, fecal calprotectine or biopsies indicate remission? If not and if you still feel on the fence, pressure your dr for other treatments. pentasa is first line treatment and other options are possible if inflammation persists. it is also not impossible to have both IBS and CD. best wishes.
What exactly is remission?
07-07-2015, 11:33 AM   #15
POTTYTIME!
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When your crohn's disease goes, "dormant". When you aren't flaring or in pain.
07-07-2015, 11:38 AM   #16
ScottieXx
 
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When your crohn's disease goes, "dormant". When you aren't flaring or in pain.
Now dormant as in you dont experience pain everyday? Im sorry for all the questions, im new to this whole thing (though had the disease for years now), and im just trying to figure everything out
07-07-2015, 11:50 AM   #17
POTTYTIME!
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Means you aren't in pain. If you are having pain and other manifestations; blood in stool, fistulas, joint pain, etc. Then you are flaring. If you have no pain, no symptoms, then you are in remission.

The questions are not a problem. Thats why you are on this site, to get info. I will answer to the best of my ability, as I to am somewhat new to this, but symptoms for years.
07-07-2015, 01:06 PM   #18
ScottieXx
 
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Means you aren't in pain. If you are having pain and other manifestations; blood in stool, fistulas, joint pain, etc. Then you are flaring. If you have no pain, no symptoms, then you are in remission.

The questions are not a problem. Thats why you are on this site, to get info. I will answer to the best of my ability, as I to am somewhat new to this, but symptoms for years.
I experience alot of joint pains and i really need to watch what i eat, i dont think ive ever been in a remission, it sounds nice though lol.
07-07-2015, 01:13 PM   #19
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Yea. I have been in a flare for over 7 months now. just moves around my body. Going in the morning to have 4 injections in my spine. Yea.
07-07-2015, 01:25 PM   #20
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What exactly is remission?
http://www.crohnsforum.com/wiki/remission This should help you.
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07-07-2015, 09:22 PM   #21
ScottieXx
 
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Yea. I have been in a flare for over 7 months now. just moves around my body. Going in the morning to have 4 injections in my spine. Yea.
Omg thats no good! Im sorrynto hear that ><
07-07-2015, 09:54 PM   #22
POTTYTIME!
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Yea it took me by surprise when my GI wanted me to go get a CT SCAN. He feared it had spread to my back. Lo and behold, I have 2 degenerated disk with arthritis from crohn's disease in them. It has been one thing after another. I keep saying one day it will get better. I know my insurance company has paid dearly on my behalf these past months.
07-08-2015, 12:03 AM   #23
Lady Organic
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I experience alot of joint pains and i really need to watch what i eat, i dont think ive ever been in a remission, it sounds nice though lol.
remission is when you become healthy, symptom free.
it sounds like you are not there yet, unless you have a IBS concomittant to your IBD. Joint pain can be be associated with active CD bowel flare, but can be independant as well, just like in my case. But typically, joint pain will stop when the bowel flare goes into remission. If it persists, you could see a rhuematologist dr, dr of the joints. What kind of fallow up do you have with your GI doctor?
Note all your symptoms on a sheet (including joint pain) and express them clearly to your doctor next time, hopefully soon. There are other treatments more powerful than Pentasa to help you acheive remission. Acheiving remission is the goal of every patient and GI doctor. hopefully you 'll get there and find a proper diet too. I invite you to read about the IBD-diet for some extra tips. Just fallow the link in my signature in my first post. You'll get some idea in the food chart in table 2.
07-08-2015, 07:44 AM   #24
UnXmas
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I think you can still be vegetarian. Some foods you may be ok with (sorry if I repeat things already mentioned - this thread is long already!):

Fruits: Bananas, tinned fruit (except tinned pineapple and prunes), pureed fruit (baby food), stewed fruit, avocados, fruit juices without bits

Vegetables: Smooth vegetable soups, very well-cooked carrots, sweet potato, butternut squash, potatoes without skin

For protein try smooth peanut butter and other smooth nut butters, tahini. Are you ok with soya products? Or eggs if you don't exclude all animal products.

Grains/cereals: white rice, rice cakes, corn flakes, rice krispies, oat meal (I think oats may be a problem if you can't have gluten though?)

Sugar-based foods are often easy to digest, e.g. boiled sweets, honey

You can also get supplement shakes, e.g Boost, Ensure, Fortisip. Check the ingredients if you're super-sensitive to dairy/lactose though. But they provide all the nutrients you need; vitamins, protein, etc.

And of course there are also vitamin supplements if you're worried about deficiencies. But hopefully you can have a balanced vegetarian diet whilst minimising your symptoms.
07-08-2015, 07:58 AM   #25
UnXmas
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I read through the rest of the thread. I've never heard of butter lettuce before either!

You probably read on the Wiki page dave gave you the link to; there are different definitions/stages of remission. It is possible to have infflammation without having any symptoms, which can lead to problems later if not treated. So even when you have no symptoms, tests may show you're not fully in remission.
07-08-2015, 09:53 AM   #26
POTTYTIME!
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Walmart sells it.
07-08-2015, 11:02 AM   #27
ScottieXx
 
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remission is when you become healthy, symptom free.
it sounds like you are not there yet, unless you have a IBS concomittant to your IBD. Joint pain can be be associated with active CD bowel flare, but can be independant as well, just like in my case. But typically, joint pain will stop when the bowel flare goes into remission. If it persists, you could see a rhuematologist dr, dr of the joints. What kind of fallow up do you have with your GI doctor?
Note all your symptoms on a sheet (including joint pain) and express them clearly to your doctor next time, hopefully soon. There are other treatments more powerful than Pentasa to help you acheive remission. Acheiving remission is the goal of every patient and GI doctor. hopefully you 'll get there and find a proper diet too. I invite you to read about the IBD-diet for some extra tips. Just fallow the link in my signature in my first post. You'll get some idea in the food chart in table 2.
Ive been doing a food journal and getting into documenting how ive been feeling day to day and I rate how good or bad it was on a scale of 1-10. I see my GI in late August... I seen him last in March and he didn't do much buch prescribe me to Pentasa. And okay I will check it out
07-08-2015, 11:09 AM   #28
ScottieXx
 
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I think you can still be vegetarian. Some foods you may be ok with (sorry if I repeat things already mentioned - this thread is long already!):

Fruits: Bananas, tinned fruit (except tinned pineapple and prunes), pureed fruit (baby food), stewed fruit, avocados, fruit juices without bits

Vegetables: Smooth vegetable soups, very well-cooked carrots, sweet potato, butternut squash, potatoes without skin

For protein try smooth peanut butter and other smooth nut butters, tahini. Are you ok with soya products? Or eggs if you don't exclude all animal products.

Grains/cereals: white rice, rice cakes, corn flakes, rice krispies, oat meal (I think oats may be a problem if you can't have gluten though?)

Sugar-based foods are often easy to digest, e.g. boiled sweets, honey

You can also get supplement shakes, e.g Boost, Ensure, Fortisip. Check the ingredients if you're super-sensitive to dairy/lactose though. But they provide all the nutrients you need; vitamins, protein, etc.

And of course there are also vitamin supplements if you're worried about deficiencies. But hopefully you can have a balanced vegetarian diet whilst minimising your symptoms.
Some of this I have just recently discovered ☺️ I actually just started using protien shakes/ meal replacement shakes, and they have been doing great.
07-10-2015, 01:02 PM   #29
Lady Organic
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Ive been doing a food journal and getting into documenting how ive been feeling day to day and I rate how good or bad it was on a scale of 1-10. I see my GI in late August... I seen him last in March and he didn't do much buch prescribe me to Pentasa. And okay I will check it out
5-6 months in between appointments is quite long, too long imo, for a newly diagnosed trying a new treatment. Dont be shy to tell your GI you would like a closer monitoring in the future. if he cant, I'd consider getting a new GI who is more available and more proactive.
07-10-2015, 10:25 PM   #30
ScottieXx
 
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5-6 months in between appointments is quite long, too long imo, for a newly diagnosed trying a new treatment. Dont be shy to tell your GI you would like a closer monitoring in the future. if he cant, I'd consider getting a new GI who is more available and more proactive.
I had no idea i will mention this to him, thank you!
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