Very New to Crohn's

[Crohns2015]

I'm 24 years old & got diagnosed with crohns not too long ago--> back in April this year. It was very severe back then to where (TMI, apologies) I was having severe rectal bleeding due to chronic diarrhea. Luckily I haven't bled like that since the first time. They diagnosed me mostly through a colonoscopy & also the olonoscopy. My intestines were extremely inflamed & ended up I had (still have) multiple ulcers from my stomach to my big & small intestines. I have tumors (benign thank God) in my large intestine and I also have hemorrhoids.

I was put on a strict diet until my follow up to see my GI so I could be put on the appropriate daily medications, but unfortunately my GI basically diagnosed me & then QUIT HIS JOB. I just found out last night via ER that I've been having a bad Crohn's flare up (either extremely constipated for a week or even 2 or having severe diarrhea to I sometimes...have accidents...). My adbomen is extremely swollen of course due to the inflammation & it hurts crazy bad on my lower and upper right side. My primary doctor wants to perform what I believe is called a HIDA test to see if my gallbladder is working & if not...I'll have to have that removed be my first Crohn's-related surgery.

I'm just honestly scared and confused considering I don't have a proper doctor right now to tell me what to do and what not to. Apparently my flare-up was most likely due to dairy products. So I know I can't really eat anything fatty, I can't eat spicy or vinagerry foods, some acidic foods...also know I should quit smoking which I am currently working on doing.

I'm just wondering: what the heck kind of diet DOES work to help stop so many flare-ups? I'm so tired of being sick & lately it's to the point where it causes extreme pain in my legs were it's hard to walk any suggestions would be wonderful until I can see my new GI doctor

 

[DJW]

Hi and welcome.

The early days are the toughest. Some people have success altering their diet. Others don't.
Have you been referred to another GI doctor?

A lot of people need a combination of medication and healthy living.

Sending you my support.

 

[Crohns2015]

Hi and welcome.

The early days are the toughest. Some people have success altering their diet. Others don't.
Have you been referred to another GI doctor?

A lot of people need a combination of medication and healthy living.

Sending you my support.

Hey, thank you so much for responding! It's been horrible, especially the pain. I'm not used to having a severe Illness, so this is extremely new to me! The ER prescribed me pain meds and prednisone and the usual nausea meds (I've been vomiting a lot...seems like ANYTHING that contains fat really irritates me bummer because a lot of foods contain fats). Is it normal to have a really low heart beat & constant dehydration with this?

They referred me to a GI doctor & my husband called. Unfortunately many GI docs do not take my insurance (soon I'll be fully on disability so hopefully these doctor probs with insurance will dissipate). It's just honestly been a nightmare. Ugh

 

[Justanothercp]

Crohns 2015,
You will not find a general consensus about which diet to follow, results vary from person to person. It will largely be up to you to experiment and find out what works for you.
Personally, I have had great success with the Paleo diet. It is expensive, labor intensive and takes time/creativity to work it into your daily life, but for me it has been worth it. Some people find they lose too much weight on Paleo and for some it just doesn't produce great results.
For me it has been a Godsend. Also, improved my cholesterol by 40 points!
Good luck

 

[DJW]

Dehydration is something a lot of us need to watch. I've been to the ER for iv fluids because of dehydration. I stay away from all sugary drinks.

 

[Crohns2015]

Crohns 2015,
You will not find a general consensus about which diet to follow, results vary from person to person. It will largely be up to you to experiment and find out what works for you.
Personally, I have had great success with the Paleo diet. It is expensive, labor intensive and takes time/creativity to work it into your daily life, but for me it has been worth it. Some people find they lose too much weight on Paleo and for some it just doesn't produce great results.
For me it has been a Godsend. Also, improved my cholesterol by 40 points!
Good luck

Hey, thank you so much for your input! I think I might try that. Luckily my primary doctor finally found a really good GI doctor I can see this Monday (thank the lord!!!) so I'll definitely bring up that diet to him. I've been losing a lot of weight since this relapse though :-/ I'm borderline underweight so we'll see

 

[Crohns2015]

Dehydration is something a lot of us need to watch. I've been to the ER for iv fluids because of dehydration. I stay away from all sugary drinks.

Yeah I'm constantly dehydrated so I feel your pain I've noticed that coffee & soda really hurts my stomach like bad! Maybe I should stay away from fruit juices as well??

 

[DJW]

It would be worth a try.
Pedialyte is very good, but very expensive. It absorbs quickly and easily into the system.
It's my go to drink when I'm dry.

 

[Crohns2015]

It would be worth a try.
Pedialyte is very good, but very expensive. It absorbs quickly and easily into the system.
It's my go to drink when I'm dry.

I've never even heard of that??? Can doctors prescribe it? And yeah I think you're right on the money with sugary drinks. This is all sucks lol I'm so new to it and ehhh it's confusing but IBD runs in my fam so I guess I should've expected this to happen.

 

[DJW]

Pedialyte can be purchased at the drug store...no prescription required.

 

[Crohns2015]

Pedialyte can be purchased at the drug store...no prescription required.

Well I'll definitely check it out tomorrow if I have the strength to. It's been pretty hard for me to do anything really aside from basically just lying around -_- I think I'll honestly just live off of that stuff or ensure because lately almost every food is causing me pain / acid reflux / (TMI) anal bleeding. Sorry to keep complaining lol it's just been terrible considering I'm newly diagnosed with Crohn's & my husband also has a digestive disease (type 1 insulin dependent diabetic). Seems like the only stuff that isn't bothering me right now is broth and water. Crackers used to be fine but yesterday I ate a few of them with broth and I ended up vomiting I hope my new GI doctor will get this somewhat straightened out because ATM I'm literally debilitated

 

[UnXmas]

Often a low fibre diet of soft, bland foods can ease symptoms. Fibre can cause problems, especially if you're bleeding. But you may need some trial and error to find what to eat, and it may be your doctor doesn't give you any specific rules to follow. If that's the case and you want more input, you could ask to see a dietician.

 

[Crohns2015]

Often a low fibre diet of soft, bland foods can ease symptoms. Fibre can cause problems, especially if you're bleeding. But you may need some trial and error to find what to eat, and it may be your doctor doesn't give you any specific rules to follow. If that's the case and you want more input, you could ask to see a dietician.

Yeah I have a feeling I might have to see a dietician :-/ it's worth a shot anyways

 

[Madhu]

Sorry to hear that. Sounds like it is pretty severe. Let us know what the GI says tomorrow. Sending good luck your way

The initial days are the toughest. My husband is the one with Crohn's and it ate me up completely initially. He suffers physically and I suffer mentally. He is finally starting Remicade in 4 days and I am counting every second to it.
*Fingers crossed*

As for the diet, its hard to decide what to eat because its different for every Crohn's patient. For my husband, I give bland food like white rice with yogurt, fully cooked vegetables. No fiber, no leafy vegetables (GI said so!), no coffee. You can take milk if your tummy accepts it. It has to be basically high calorie food with less fiber and lot of protein.

:thumright: