Still confused

[Amber82]

:confused2: Well I am 28 now and it has been like almost 5yrs and food is still tricky, I'm worn out a lot. I had surgrey last year where they took out 8 to 10 inches and I found out I'm allergic to pain meds, which is not to bad because I have a high pain tolerance , but its still not fun to do surgery with out meds. Things are better now but I have started getting the crohn's rash and mouth sores. I really just signed up for this site to help in anyway I can, and to get help from others who know where I'm coming from. Nothing about Crohn's is easy but I feel better now that I'm not alone.

 

[dragonfly]

hi amber! i am new to this site myself but many people have already offered advice and kind words so it is a great place!! food is very tricky and everybody is different in what they can/cant tolerate, my dr told me about a diet called the "brat" diet that i have used many times during a flare-up, she recommends BRAT....Bananas Rice Applesause and Toast these foods are very easy to digest. i dont always follow this but the times i do it does seem to help when taking meds that i must eat with it. i dont mean to be nosy but what is the crohns rash? i had mouth sores many many years ago i dont remember it that well but i do remember it was so bad i could not eat or drink anything at all my tongue had actually lost its top layer if that makes sense at all!! my dr actually had to wipe on something that was horrible and made me gag but thank goodness it did clear up my problem!! i thought i had "rashs" as well but i just found out a few weeks ago that i have hidradenitis on top of crohns!
i wish you well and welcome to the group!!

 

[Amber82]

thanks

thanks for the welcome! Ok the BRAT'S thing that is awesome they always just tell me bland food which could be anything, but that makes sense. The rashes are well just a rash but it doesn't itch just hurts like a deep bruse. This is the 2nd time I have had it, and usually only happens when my body ph is off, or atlest I think thats what is going on. I have a DR. appt. in a week in a half and took a picture of it incase it was gone by the time I get in. You know how that goes. So what is this hidradenitis? I haven't come across it in reserch. thanks for the good info.:ybiggrin:

 

[CJC]

In a flare the BRAT diet is about the only thing I can tolerate; with a well-baked or boiled potato thrown in when I can...

 

[Amber82]

Thanks for the tip, I do like potatoes!

 

[xJillx]

Welcome, Amber! I am glad to hear you are doing better after surgery. Do you continue to take maintenance medication to prevent future flare ups?

Have you phoned your GI about the mouth sores and rash? If it is the start of something, better nip it in the bud quick!

 

[Amber82]

Yes I am on meds I take 2 azathioprine 50mg, multi vita, and fish oil. I have an appointment soon so I should be good and I'm sure the meds will change then to, and I'm trying to really watch my food just incase:thumright:

 

[David]

Hi Amber and welcome!

You said you had surgery. Do you know exactly what they removed part of? Colon? Small intestine? Ileum? Terminal Ileum?

And do you know where your Crohn's is most active?

Let us know if you know the answers to the above as it may help in your treatment going forward.

Take care!

 

[Amber82]

thank you for the welcome and it was my terminal ileum that was removed in my surgery. Also I read your post with all the good and bad foods loved it! just nice to have a cheat sheet! Thanks again

 

[David]

I was wondering if that was the case. Do they have you on Vitamin B12 injections?

 

[Amber82]

No they don't

 

[David]

Which is very likely why you feel worn out all the time. The terminal ileum is where vitamin B12 obtained through your diet is absorbed. I'd put money on your needing to get on Vitamin B12 injections. PLEASE see to this, you'll be glad you did if I'm right.

 

[Amber82]

Ok I will make sure and ask the Dr. That make sense I bet your right . Thank you so much!

 

[Amber82]

David, thank you so much! I have been doing the B-12 shots for a week and a half now and I really do feel better! The Dr. also put me back on entocort for a while too. I really feel more like my self again even getting back to my walks after work with the dogs. You are awesome!!! Thanks

 

[David]

Hi Amber,

That's fantastic, I'm so pleased to hear it. Please note that I've read research that suggests it can take a solid dozen+ injections to replete the levels of B12 in your liver and then regular injections to keep it up.

I hope everything continues to be positive for you from here on out!