Soy milk and Crohn's Disease

[Zarajaquiss]

Hi everyone,

I was recently diagnosed with chrohns disease. My name is Zara im 22 and im from the UK. Currently living in Dubai. i just really wanted to ask a few questions really as its all abit scary for me right now especially as my parents live so far away.
My doctor told me not to have any processed milks or cheese all the dairy products and today was the first timei couldnt have my morning coffee which i so love! A friend mentioned something about Soy milk and thats it would be ok to have as a substitute and its not processed milk or anything?does anyone know if this is right?
i have also been put on steroids and just the name worries me. The doctor said there would be no serious side effects but what im reading on the net seems to be very differnt.
it would be great if i could have some advise on how every deals with there own condition also, feeling quite alone and my boyfriend really hasnt said much to me about the news.

look forwad to reading some replies

Zara x

 

[misscris]

:welcome: Zara. Sorry to hear you're having a hard time, but you have come to the right place.

 

[imisspopcorn]

Welcome Zara,
There is a lot of great information here. You may want to search the treatment threads. I am assuming he put you on Prednisone. I have been on it many times. While it does have many side affects it works extremely well in reducing the inflammation we experience. It usually works rather quickly too. The common side affects are swelling of face and weight gain.Luckily they are not permanent. My doctor has always said to limit dairy but not necessarily eliminate it. There are many non-dairy creamers here, I don't know what they have where you live, but just check around. You'll find that certain foods may not bother you while other people can't tolerate them at all.

My personal advice is, its okay to be sad and worried about this disease. I think every person who is diagnosed with a chronic illness goes through a mourning period. This forum is an awesome place for support when you need a laugh or to vent. I hope you start to feel better soon

 

[Zarajaquiss]

thank you for the welcome!

actually im on a steroid called gupisone..have you heard of it? im taking 2x20mg in the morning.
your right its scary at first but mainly because its a disease, if it was just chrons i think id handle it better! lol.
Dubai has a lot of malls and has everything here so im sure i can find some products that are diary free somewhere..im on a mission. hate the thought of giving up my starbucks.

 

[robbo87]

Hi Zara, Im also 22 and was diagnosed in january, I was never told to avoid milk or cheese but i do know a lot of people with crohns cant go near it, but i must be lucky in that i seem to be ok with milk, i do eat a bit of cheese but i dont think i should be touching the stuff tbh..

As for the steroids, people react very differently and i was very apprehensive the first time i went on them. at first i did get a bit of "roid rage" and i had a lot of trouble sleeping, aswell as a few other minor things like weight gain, although this was a good thing considering the amount i'd lost....

but after a short time my body got used to them and the side effects pretty much wore off. Crohns disease is still something im struggling to deal with, after 9 months i still dont have a clue about what i should be avoiding but im sure you'll soon learn what your body can handle and what it cant.

 

[shazamataz]

Hi Zara and welcome,

It can all be a bit overwhelming can't it? I am relatively new to this too, having been diagnosed 3 months ago.

I am on steroids and tapering and as far as side effects go the only real problem for me is fatigue while coming off.

first month or so I actually had more energy than before and got a lot of stuff done. This is quite common with steroids. I felt really happy and motivated, so if you get this side effect, make the most of it!

Sorry to hear your boyfriend not sounding very suppoprtive, he may just be worried and not know how to deal with it.

You've come to a great place for support here

Sharon

 

[Zarajaquiss]

robbo - i have been told lots of different things about what to eat what not to but you know the way im looking at it is that its a change of lifestyle. im cutting out certain things i have done it before on diets so i can do it with this, just another thing to cut on is how im trying to look at it. and as far as the weight gain that doesnt sound nice! im sure any woman would say that!
frustrating to have to watch everything i do now first thing i asked the doc though was..can i still drink alcohol?! lol

shazamataz - it is extremely overwhelming and im trying to come to terms with it but its much harder than it looks. i try to be positive because im still very young and i dont want this to interrupt and control my life.
Having extra energy def a side effect i would like to have!
the boyfriend thing its hard, because where as i want to talk about he ddoesnt see what about, because he knows all the symptons i have had for past year and now he sees it as just cutting food out and taking tablets. which is hard

 

[robbo87]

robbo - i have been told lots of different things about what to eat what not to but you know the way im looking at it is that its a change of lifestyle. im cutting out certain things i have done it before on diets so i can do it with this, just another thing to cut on is how im trying to look at it. and as far as the weight gain that doesnt sound nice! im sure any woman would say that!
frustrating to have to watch everything i do now first thing i asked the doc though was..can i still drink alcohol?! lol

Lol that was also my first question... and tbh my biggest downfall has been drinking far to much at the weekends! i have spells where i dont drink..... but that means my social life suffers greatly due to the lifestyles of my friends.... who do nothing but go out on the town at the weekends.

The part I've probably found hardest tbh is friends not understanding what its like when im rough especially seeing as youd never know there was anything wrong just to look at me.

if you are on a high dose of steroids at the moment btw id suggest taking it easy on the booze and not having to much as it will probably send you a bit silly!...

 

[Zarajaquiss]

bit silly?? well thats just cheaper then isnt it which is a good thing! i dont plan on ltetting this take my social life away from me no way. giving up cheese is hard enough and coffe with milk. amoungst others.

i know what you mean about friends not understanding, as far as they are concerned its a bit of stomach pain follew by trips to the toilet what the big deal! but its so much more than that sooo much embarrasment with it and i was on a boat the other day and well thats all ill say and then a traffic jam this morning and its just horrid!

hope these bloody steroids work.

 

[Theresa]

Welcome Zara,

I also live in the Uk, I am currently awaiting my diagnosis, but the guys on here are really helpful and I have really been grateful for their support it so good to be able to write a question and have people who have been through what you are going through tell you about their experiences.

I was also told not to drink milk so have cut out tea completly as I cannot drink it without milk. My doctor has been speaking to me about steriods and that really scares me!
take care

 

[robbo87]

bit silly??

by silly i mean completley off it and out of control!.... haha although the treble vodka and red bulls may play a part in that!.... something which i need to learn to avoid!

 

[Donna B]

Zara I was diagnosed 12 years ago, at the age of just 14 and still not fully come to terms with it, constantly making sure it won't beat me and fighting it. I've never, ever been told to restrict things from my diet, only advised "if it causes pain aviod" and that generally works for me. For years it was no red meat, fruit or veg. Now i can have as much fruit and veg as i want but no red meat or gluten. I think what you can/can't tolerate depends on which part of the bowel is inflamed.
I have to say i think steroids are fantastic, they make me almost manic so i get so much done! I do have to take sleeping pills with them tho or would never sleep!!
As for weight gain with them, i've never been affected, my face swells a bit a high doses but that's all. Make sure they give you calcium to go with though- I was diagnosed with osteoporosis at 21 due to years of steroids.

 

[Zarajaquiss]

Shantel - thats decided then starbucks for coffee at lunch to see if they have soy milk..very excited at that prospect! And actually the only thing really effecting my sleep right now is my god awful cat. he likes to sleep with me but i have had so many restless nights recently that im drained but he doesnt understand and jyst meows which is equally annoying! lie ins this weekend id say!
The boyfriend your right he will come to terms with things, i think he is accepting it the best he can, even this morning i was curled into a ball as i was in a lot of pain and he did wrap his arms around me telling me he loved me whch was a lovely wakeup call! doesnt happen often but maybe it will now, maybe thats his way of understanding!
i do smoke yes, i know i should stop but my doc hasnt said anything and he knows im a smoker..im cutting down.
Thanks for the welcome and advise!

Theresa - i know its a scary word steroids isnt it. i keep thinking about the association with atheletes to get better in there sport..thats what they use right? so if i was training, which im not im too lazy, would ithave the same effect? just wondering

muddin gal - yes think i will try the soy milk. And your right ihave only been on this website for one day but i feel so much relief already that people take the time to answer the questions your worried about and you realise your not alone. Its good to have a group like this to be there.

Donna- i have to say i have yet to feel the energy that comes with the steroids but fingers crossed i wil as im mving apartment this weekend so there will be plenty of boxes to carry and then unpack..although i should probably start packing them now! need more energy please!!

 

[bella_sky]

Zara, I was also an avid coffee drinker until CD got ahold. I now drink organic teas when I get the urge even tho it makes me nauseous, and have found that soy milk, cheese and all are actually really good. Its ok to be sad, I still am sometimes, hope things get better for you soon.