New to everything

Hi everyone my name is Josh. Im 18 years old and i was just diagnosed with crohns roughly 1 month ago. Here goes my story.

About 5 months ago i started to get the "D" like 10 times a day and had no idea what was going on. Im the type of person that doesn't like going tot he doctors and i choose to ride the symptoms out. Unfortunatly 2 months went by of symptoms getting worse and i eventually told my parents and went to the doctors. My family doctors suspected it was celiac disease so after a few stools samples and about a month of blood tests and doctor visits i was sent for a celiac screening. The screening came back positive and i was told to go on a gluten free diet and everything would return to normal. So the gluten free diet was started and nothing but the same old problems kept happening. So back to the doctors i went and i got sent to a clinic for endo and colon scopes aswell as 2 biopsys. Once the test results came back i was diagnosed with chrons!.

Finally i thought! they figure out whats wrong with me and i can get normal again. Well now i sit here thinking how much longer can i deal with this?

I was put on medication, florastar, and a cycle of prednisone for 1 week. The week on prednisone and the week following i felt like a million bucks. I was normal again. Eating everything in sight, hanging out with friends and bowl movements only once a day. Then boom.. Everything went back to the same old horrible stuff. I went back to the doctor today to see if i could get some more prednisone untill i see a gastro but he said no. Im now going to see a gastronoligist on the 19th of march but this is becoming to much and i seriously don't know how much more i can take. The specialist that did my endo and colon scopes said i have an anal fissure along with internal hemmoirds ect.. ( called it anal disease ) because i guess the crohns was bad enough to cause some damage around there .. Im not in so much pain that im screaming everytime i go tot he washroom due to the fisure/hemmoird im not sure which one but its the worst thing i have ever had to go threw. I asked the doctor today what can be done about the fissure and he says ill most likeley have to live with it for the rest of my life. Which almost left me in tears because i know theres no way i can deal with that pain everyday for the rest of my life.

Im sorry for the long 5months story but i thought this is the best place to dump what i got on my mind.

Thanks for reading and please post any advice you can give me regarding any of these topics? I dont know what to eat because i always have diareha no matter what. and theres always blood. I think iv been in a flare this entire time. I have bad pain in my knees,. feet, neck and back.

first off I wanna say welcome, I've only been here myself for about 2 or 3 days but this is the BEST place to find people who understand what you are going through and make new friends. I've been diagnosed for a little over a year and these past few days have been the best out of that year because I finally dont feel all alone in the world and that is a great thing for all of us. Keeping a positive attitude and taking it day by day is all any of us can do (well, that positive attitude thing sortta flys out the window every now and again but at least here we can vent to one another and pick each other back up ) You should really talk to your Dr about surgery , I know it doesn't sound like a great idea, but there are things they can do to remove the worst effected areas. It is true, crohns is something that you will have to deal with for the rest of your life, always on meds, always have to look for the nearest restroom, some days will be worse than others, and you'll never know exactly what tomorrow is going to bring. I'm on 40 mgs of prednisone a day and I'm still in extreme pain... on top of that the Dr also has me on tramadol, bout 100 mgs of it a day or so. For the most part I dont even take the tramadol, he says it is safe but any pain med that goes thru you in my point of view can't be good when you have ulcers... but hey, he's the Dr and I'm just the "lab rat" :yrolleyes: ! If all else fails, get a new Dr. I've been through... well I'm on the 3ed one now since being diagnosed. The way I see it is that if i have to live with this for the rest of life, then the least I can ask for or do for myself is find a Dr that really cares and will sit there and listen to me till I turn blue in the face. The one I have now, all i do is call and he will even stay late if he has to just to get me in so I can see him. having a good Dr - patient relationship really pays off. If I think of anything else, I'll be sure to post it, at the moment I'm a bit foggy headed. I haven't managed to leave the house much or hold down a job for almost 6 months so I've been working on building my own business and i must say I think it is the pred but I can't seem to stay awake long enough to get anything done this past week. Keep your chin up, we are all here for ya

Hi Josh.

Most of us have been through this. Just hang on and things will get better. As far as foods are concerned, I have found creamed soups, yogurt, ice cream, and other soft/liquid foods help when the Crohn's flares up. Each person is different though. The key thing is to keep very well hydrated, especially with the D.

Dan

PS, are you in college now? Just remember, some girls are suckers for the hard luck cases. Play the sympathy card, and it might get you places.

Thanks alot both of you. Every bit of advice and information from someone thats been threw this helps me more than you think It just seems like a never endless thing. Everytime i find out new information about this disease it only seems to be worse and worse. Is surgury going to be a most likley thing with crohns?

Lol thanks Dan. I just finished highschool and i took a year off to work full time and get in shape before i went to college for police foundations. And with my amazing luck i get this disease and i have been out of work for 2 months and havnt seen the gym in about the same. My parents keep telling me to get motivated and look for a job or get out off the computer but they don't understand how i feel and how it takes effort just to walk up the stairs now.

I understand completely how you feel when you say every piece of information helps and just talking to people helps, I have been basically living here these past few days because I have had so much held inside for so long it is wonderful to finally open up and share this with people who understand. And yea, my parents also get frustrated that I haven't left the house in so long, bout the time I got diagnosed and up till now I've been completely miseriable, b4 that tho they couldn't pay me to stay here. These 6 months have been the worst tho for me. I cant say for sure that surgery will definitely be a part of the future but from everything I have heard and read I'd have to say there is like a 99% chance of it being there in your life at some point in time. The meds are supposed to put it into remission meaning make it go away, but as alot of people will tell you remession doesn't always happen. As I have said, mine has yet to go into remission, it isn't worse or better i guess but it is most definitely still there so I'll most likey get the the pred doseage up'd or be put on something different. Surgery for the most part is for extreme cases. It is always a last step but it is something you should think about and get "comfortable" with just so you wont completely flip out when and if you are faced with it in the future

Also here are some links for you to check out on surgery, you said any information so instead of going into detail about things I have not had to deal with yet, I'll let you read up on it yourself.

http://www.mayoclinic.org/crohns/surgery.html

http://ibdcrohns.about.com/od/surgeryprocedures/a/crohnssurgery.htm

http://www.ccfa.org/info/surgery/surgerycd

http://www.webmd.com/ibd-crohns-disease/crohns-disease/tc/crohns-disease-surgery


well, there are a few, they mostly all go over the same thing but there is some other aditional information you might want to read on each one of the pages there. The more reading up you do and the better you get to know what is going on inside your body the better you will feel about it all. It is alot to take in at first, but I personally can't stop learning and reading more about it. If I gotta live with it then learning as much as I can is my way of dealing with it in a way.

Ok thanks alot for the info.. i really hope i wont need surgury and medication can fix this. Right now i can deal with feeling like crap but the fissure is the absolute worst thing ever. Im pretty much afraid to go to the washroom now. And i havnt been on a liquid diet or anything? iv just been eating full healthy meals. The D has gone down to like 2twice a day instead of 10+ so thats good but those 2 times are killing me. Sorry for the details but I guess this has just de-sensitised me alot.

welcome Josh, glad you found us

Welcome Josh, we're of a similar age and I only got diagnosed recently too so I can sort of relate to what you're going through on that level. I find it hard to be normal and go out with my friends, especially to dinner and parties. Mainly because of the food element, it's so difficult when everything disagrees with you and when you can't drink socially etc. I got the same 'how do I deal with this any longer?' scenario. But it does get better. I tried similar things to you before getting diagnosed too such as the gluten free diet and it didn't help. The only thing that made me feel normal was the high dose steroids, but obviously steroid treatment is not forever and now I'm wishing to get off them fast.

I can't offer much advice on the fistulae side of things having never experienced one thankfully, but I do hope your gastro can sort you out and hopefully get things more comfortable for you.

hey natalie. Thanks for posting. Yeah this reall does suck with friends ect. I tried to go out and have a few drinks one night and the next day was horrible. Im assuming you cant drink with crohns?

I am 24 and I drink with Crohns, it all depends on your body. I dont go out with friends tho much, I never know how I am going to feel from one min to the next, slowly I am learning how to deal with that tho. I know of alot of people that have Crohn's and drink. To be honest, alot of Crohnies turn into alchies, so be careful, I know Im just now pulling away... I was really puttin down the beer for a while tho, and I dont reccomend harder stuff like liqure, now that will have a bad effect on ya. Think of everclear for example... you know that a person can clean thier motor off with that and so on (yuh, Im a chick that buys everclear to clean her car motor... Im big into cars, so what lolz) Point is... if something can eat motor sludge, just think of what it does to your body, we as Crohnies dont need that. Vodka and so on might not be 90 proof but it will lead to the same problems in the long run. You are a bit underage but either way, if you are going to drink, stick to somethin like wine or beer and dont go to the extreme with it, keep it at a 12 pack or so and dont let it turn into a daily thing. Most of why I drank was to put on weight, I was down to 97 lbs.... thankx to my dearest and oldest friend Mr. Budweiser tho I made it up to 125... stopped drinking about a month ago and now I am at 115 already. The steriods aren't keeping me up there because I just keep getting sick. I swear I will never go back to drinking everyday but I also have swore to myself I am not going to turn back into a stick figure.

mRae85 drinking age in the UK is 18, laws here are different so it's all totally legal. There was talk of the age being increased to 21 as it is in the US, however nothing has come of that.

I went out last night and had a small drink, just a spirit and a mixer and I felt a slight burning feeling afterwards but I was okay. I feel reasonably good today aswell. In the past I've had alcohol and been really ill following it though despite the fact it's only been a tiny volume, really bad D for days.

I think it all just depends on how you are feeling in yourself and whether you think it's sensible to take the risk. If you're having a difficult day it's probably not the best of ideas but otherwise I see no harm in having a drink, but certainly in moderation.

yeah thats very true girls. Thanks you..

I just spent yesterday and am going to spend most of the day in the hospital because i woke up yesterday with shortness of breathe and it only got worse as the day moved on. The took tests and i test positve for a blood clot so i went for an Ultra sound on my legs this morning and i gotta go back in a few hours for results... Wish me luck :'(

oo my bad, sorry, not so up to date on legal age for other places...

Go for it then if you are feeling up to it, drinking that is.

Sorry to hear about the blood clot Be sure to let us know how everything is as soon as you can, I will keep you in my thoughts!

hey man welcome, im 20 years old but ive had crohns for a little bit now if you have any questions feel free

hey josh. im 19 and same boat as you- took a year off between high school and college (hoping to finally get my disease under control) and its done nothing but get worse.
i cant believe what your dr said about the anal fissure. "you have to live with it forever." NO! i would definitly do some research and see another doc if need be. ive never had one of those, but to me, "just deal with it" isnt good enough.

as far as foods- i dont even really know for myself what is good or bad for my system. when im flaring bad though i end up eating a lot of mac and cheese, potatoes, soup, stuff like that. and pizza haha lol. i just try to eat as much as i can b/c i lose weight so rapidly. is your appetite pretty normal for you right now?

and to dans comment- heh heh yes a guy with hardships is attractive to certain ladies. it shows a lotta maturity for someone to have this huge mess on their plate and to just keep on goin. and girls like maturity

For you and kello both, as well as anyone else looking to go to college, try thinking about online schools, there are alot of them out there and you can work at your own pace. I threw alot of options away when I was younger, I'm only 24 now but getting my health under control as it gets worse seems to be consuming my life and I am just now attempting to put any of the pieces together again. I'd really hate to see either of you pass up the chance of education at your age like I did!! !!!

I'm sorry to hear about the blood clot. Were the docs able to clear it up?

Regarding alcohol. +1 on avoiding the hard stuff. Hard stuff will irritate your bowel and compound your problems. As a long timer with Crohn's and an avid home brewer, there is nothing wrong with the occasional beer. Check with your doctor first, just to be on the safe side. This is also an opportunity to make your friends happy by being the designated driver when they want to go out partying. Girls also like responsible guys.

Dan

haha Dan, I like the idea of a sober driver and you are right, us girls do like responsible guys. Also i agree with what you just said, check with the Dr and i wouldn't reccomend drinking while in a bad flair or well... even if its not bad but to the point of not good either, once again that is responsiablity

hmmm..... hope to hear something about that blood clot soon... that really has me worried, those aren't a good thing at all, thought I'd add though that I'm not sure but asuming you can get this over there, if blood clots seem to be an issue for you or look as if they will be a reaccuring issue in the future, you might want to take 1 baby asprin a day. My dad is 75 (yea Im the baby baby of the family seeing as I am only 24) but he takes 1 baby asprin a day, it thins the blood just enough to prevent and clear up blood clots. He has ALOT of them and I kept getting on him to get to the Dr and finally just lat year, November of 2008 he broke 3 bones in his ankle / foot and the Dr jumped on him hardcore about it. Only take 1 a day, no need for more and it is mild enough to not upset the stomach, it is mind you only a BABY asprin

OKAY im back and just barly alive. I spent the past 5 days in bed and 3 of them in the hospital. I went threw CT scans, Ultra sounds, blood tests, blood thinner shots ( in my stomach !!!! ), IVs. Omg i have been threw the worst weekend ever. It turns out they didnt find any clots in my legs or chest. Which is good and my breathing is almost better. Theres still a little bit of pressure in my chest but not as bad as before. Now im stuck in bed with the painful D. I have a few questions that have been bothering me while laying in what seems to be my death bed.

1) Am i going to have the D for the rest of my life? i have had it for 5 months. Minus the 1 week i was on Prednisone. Or will i eventually have normal bowel movements and beable to eat normal meals?

Right now im living off water and soup broth. I drink gaterade throughout the day and suffer 10mins later.

Oh one more update. I basicly feel like my body is falling apart. I have no energy. I can barly walk or do anything without feeling drained and sick with a light head and i have the D with EVERYTHING even if i stay on like eggs or just water soup broth. Im pretty sure i dont even have a " digestive system " just the food falls from my mouth, stays in my stomach to cause me some bad pain and out it goes.

Hey Josh...I just read your post...In regards to the post just above...I have had D since I was 12...I am 26 now...except for a few months in college (in 2001) when my poo was normal...for me, it's just a fact of life. however, it's not 10 times a day like you are...about 2 or 3 is normal for me.

As far as getting back to a normal life, and eating and acting normally...when you are in remission, you should be able to lead a fairly normal life. You will still need to stay away from the foods that trigger you (you will figure those out as you go, it seems to be different for everyone), but you may be able to indulge a little bit in the things you love...everything in moderation is my rule. I can't have chocolate...but every once in a while, I sneak a fun size bar, and I'm fine. For me...your egg diet would be nasty...I absolutely cannot have eggs...BAAAAD D...

I feel you on the 'no energy' thing...at the end of my work day...I am EXHAUSTED! It's everything I can do to stay awake. At this point, for you...it's pretty much just hanging on till you can find a good treatment that works for you. Surgery is never the first option the docs go with...but it may be required at some point in your life. With Crohn's...it's a matter of accepting that you have it, and dealing. It's so easy to say, and so damn hard to do! right now, you are going through a bad flare-up...and it's the worst feeling in the world. But it will get better. The docs will work with you to find something that works for you. Be patient...you WILL feel better..it just may take a bit of time.

but we are all here for you, any questions, we can answer them (or try at least). This place has been my haven for the last few months...

Thank you for your post daisy! Im just wondering about the D because i have been so confused.

Im having the D about 3 times a day ( without eating much ) and today was the first time in a week i had some chicken with a little cesar salad.

I have been confused like.. Am i looking for foods that trigger horrible D quick? and sticking to the foods that just give me normal D lol?

I cant believe im gonna have D for the rest of my life? the whole reason i havnt been eating much is because i get D no matter what i eat? but i guess i was wrong and i should be eating it even if it gives me D? As long as its not right after and it isnt bad? This is where im very confused now.. I have been searching for foods that dont cause D.. Which is nothing

hmm i dont quite know what to say here. ive had crohns for 10 yrs but the D has really only been bad for me since nov 08! really recent. before that it was more formed bms, spent a ton of time in the bathroom each time-like my entire lg intestine unloading at once.
so that itself should give you hope that you wont have D forever! your symptoms can definitly change. or they may just go away, that would be IDEAL!

i would like to ask, have you had a stool culture recently? to me, your symptoms sound like it could be C Diff as well. i was dealing with that last year and it sounds like what your going thru-lots of D, food and even drinks running right thru, and pain after eating.
not trying to diagnose you here, just think it mught be worth a poo in a cup to be able to rule that out.

Josh said:

OKAY im back and just barly alive. I spent the past 5 days in bed and 3 of them in the hospital. I went threw CT scans, Ultra sounds, blood tests, blood thinner shots ( in my stomach !!!! ), IVs. Omg i have been threw the worst weekend ever. It turns out they didnt find any clots in my legs or chest. Which is good and my breathing is almost better. Theres still a little bit of pressure in my chest but not as bad as before. Now im stuck in bed with the painful D. I have a few questions that have been bothering me while laying in what seems to be my death bed.

1) Am i going to have the D for the rest of my life? i have had it for 5 months. Minus the 1 week i was on Prednisone. Or will i eventually have normal bowel movements and beable to eat normal meals?

Right now im living off water and soup broth. I drink gaterade throughout the day and suffer 10mins later.

Click to expand...

First off, you are not on your death bed. Do you think the docs would let you out of the hospital if you were??

The Ds will go away once they are able to get you back into a healthier state. You will be able to go out and enjoy food again. Trust me! last summer I was a student volunteer at the James Beard Foundations award ceremony. Its the Oscars for chefs and foodies. I had some of the most amazing food while I was there and met many famous chefs. If you keep your spirits up, you might one day have an opportunity to do something like this too!

Just rest and take it easy. What meds are you on now? I was surprised to see you were on pred for only a week. My doc was extremely agressive and kept me on it for 4 months, including the weaning off period and a transition period to imuran.

Dan :ycool:

Im on some long med that i take 4 times a day called something like aminoSAacids... and thats it. I get to see a GI for the first time tomorrow.. Hopefully he will give me something that will stop some of this garbage..

Lastnight was the first time i ate solid food.. I had chicken cesar salad and my family brought over dounts lol. I honestly didnt care what was to happen so i ate 1 and a half donuts! one with chocolate lol.. Well the night and morning wasn't the greatest but i dealt with it.

BIG thanks to everyone showing support and advice and ill keep u posted about the visit to the GI tomorrow!
Hope evryone is doing ok with thier symptoms!

good luck with your appt tommorow! hope you can get something that works for you

Glad to hear back from you, the blood clot thing had me really worried, those are never good!

Good luck on the appt, let us know how it goes. You might have a few more tests to go before they ever start to balance you out, but dont give up! We are all here for you. As far as the D goes, sometimes it will turn and go the opposite also, this is something that never seems to have a "normal" anything to it. Also, I tend to eat almost anything I want for the most part. Any food that I manage to keep down I am sure does me some good. BUT i do stay away from things with seeds (oooo how i miss strawberries and other berries ) Also another good thing to avoid is nuts! (I so miss those too)

Hey, Josh.:ycool:
Glad to see you found this site, it'll help.
I've had CD since I was 8- now 29.
Iwas in remission for a while - did college,two jobs, etc. There were always abnormal poops, even in remission.
Food will be a constant change as to what gets you sick or not-yeah us...lol
Usually with CD and having D you want to stay away from fiber foods.
Drinking seems to help my stomach most of the time. Although certain liquors and beers give me a bad belly day. I've found the ones that agree with me so I can still go out and have fun.

:cheerss:

Hey ladyB thanks for the welcome and info! i appreciate everything!


UPDATE EVERYONE:

I finally got into my first GI and... He put me 4 months of prednisone! So im pretty happy about that... a little freaked out but hopefully it works and gets me out of my bed for more then 5 mins at a time!

This GI was pretty young.. had a good bed side maner and sounded like he knew what he was doing. Which was god to hear for once. He also told me that what i was put on before was totaly pointless so im off that now and he said that the 10 day cycle of prednisone i was put on before from the last doctor was stupid and i should have been put on a longer term of it.

Oh! about the Prednisone!

Im on 8 a day for 2 weeks, 7 a day for 2 weeks, 6 a day for 2 weeks and so on untill the pills run out.

Does this sound normal?? im gonna be at like 5 a day when it cuts to 0 a day? wont i need to lower before i jump from 5 to 0

Welcome, Josh.

I feel like an old goat...37 here. Here's my 2 cents:

1. Read this forum and continue posting. It's an awesome place to vent, ask silly questions and learn from others. And, hey, where else can you feel comfortable talking about poops!

2. Food tolerance varies by individual. You'll learn over time what agrees with you and what doesn't. Everyone's different. For me, I've found it's more about how food is prepared than the ingredient itself.

3. Drink lots of water. This disease dehydrates you - I found out the hard way through several kidney stones. I can do alcohol but unlike Dan, I can't do beer. I pay for it the next day.

4. Get a good GI. Ask questions. It's your body not theirs so make sure you can communicate with him/her. Also, consider seeing a nutritionist. Helped me immensely.

5. Prednisone may help you short-term but it's an evil drug. I've been on it for 7 months and hate how it messes with my mind, not to mention bloating, etc.

6. Stay positive. Rest. Enjoy being a kid. I wish I were your age again. . .

Nice to see that your Dr is treating you finally

What mg are the pred pills ea? Mine are 10mg - 5 a day would be 50mgs so I am guessing yours can't be 10mg ea... right now I am takeing 1 and a half twice a day for a total of 30mgs a day, I was taking 2 pills a day 20mg each, but since Monday started to taper. Usually they won't cut you off completely untill you are on 10mgs or less, meaning your pills are maybe 2mgs each? Wierd, let me know.

Be careful with the pred, none of us can warn you about that enough. It is seriously an evil... very evil drug.

Hey fenway! thanks for the post and info


Hey mRae85 the pred pills are:
5mg - 8 day for 2 weeks
5mg - 7 day for 2 weeks
5mg - 6 day for 2 weeks

and so on untill the pills run out... Does this sound right?

Seems right. I started at 40mg per day then 35, then 30, and so on and so forth.

Hi welcome, hopefully the pred gets you feeling better soon. Keep us posted on how you're feeling. Are they starting you on any other meds at this time?

yea, it sounds right, I just can't figure out why they didn't give you 10 mgs at least vs 5mgs jeesh thats alot of pills to begin with. I was on 20mgs twice a day for 40mgs daily, now I am on 30 mgs a day so I am taking 1 and a half 10 mgs twice a day, not sure what the next taper will be but I am guessing 2 of the 10s a day for 20. So yea, it seems right, I was just thinking 8 pills a day of just the pred is alot of pills to take in general (I also take 12 different vitamins, 4 Sulfasalazine daily, pain pills when I need them and I try to avoid those untill I am on the verge of screaming, and soon to be put back on Asacol so to me.... 1 more pill is like the straw that broke the camels back so to speak hahaha) I sometimes feel like an astronaut just because when I dont feel good and can't eat alot of food, I still take my little cup full of pills hahah.

On the note of pills, I want to add a #7 to fenways post... take vitamins, I am sure someone has already told you this and I want to also tell you this. Vitamin C, Calcium, a daily vitamin / multi vitamin , and Vitamin D are a good start. I also take B12, even though so far nothing has shown that I need it, it won't hurt to take it because B12 is a big issue for anyone with Crohns. Selenium is another good one that gives you antioxidant support and we all need that also. Any kind of an Omega-3 supplement you find can be good also espically if you don't eat alot of fish like me, it is found in basic seafood like salmon, mackerel, tuna and sardines and has anti-inflammatory properties. I hate taking so many pills, but when they help give you better health in general, it is worth it. Just wanted to pass that on to you so you can check into grabbing a bottle of each or something. For the most part you wont really see any side effects that shout "wow I'm a new person and I'm cured" but they do help make you stronger and healthier

kk ill look into the vitamins.. right now im taking prednisone and a 1 a day multi vitamin.. wont that be enough for vitamins? or should i go all out and take them all lol

That sounds like a good pred schedule to me. A 1 a day vitamin is probably a good idea, but you probably want to verify with your doc. I was also on iron pills when I was diagnosed due to anemia from the bleeding. You might want to ask about that, if it is an issue for you.


Dan

yeah my blood test showed that i was anemic? i guess thats from the blood loss?

I'd go all out with vitamins, talk to your Dr before taking Iron tho because if you already have enough then you can get really bad C from it and other issues. All of the ones I mentioned are ones I take daily and have no bad side effects. These are all things that are reccomended for people with Crohns. Just be careful with the iron as I said, if you dont need it then it can have bad effects, that one is a tricky one. There are different types of anemia so I can't say if it is due to blood loss, lack of iron, or some other issue. You need to talk that out with the Dr and he will give you the best advise on what other vitamins you should take to help with that. If you are worried about it you could take the Vitamin B12, also it is another that I recommend anyone with Crohns to take so either way, it will help you.

A multi is great for someone who is not fighting an on-going illness, but we have an on-going illness and the meds that are used to treat us suppreses our immune system. That is why I go all out with the vitamins.

Ah alright thanks mRae85. I will deff talk to my doctor about it!

as for the prednisone.. it is starting to kick in with the no sleep/hunger symptoms but the other stuff if still sorta there.. I hate how it keeps me up till like 4am everynight.. and i wake up at like 9am.

have you ever tried taking benadryl? it makes most people sleepy and is pretty harmless. better than trying sleep aids and heavier drugs like that.
also, with the anemia, if it is a problem for you, i have found that a Hematologist is better then your reg GI when it comes to it. they specialize in blood so they can help you figure out the cause of your anemia and whats the best treatment etc. good luck!

Ill be sure to get back with you tomorrow once my mom wakes up, she knows every natural herb and vitamin for everything and has a stack of sleep aid cures. I think I am going to make a thread on this forum sometime with some of what she has thought me. She has big binders full of notes and stuff she has made through the years so I'll be sure to pass some along, I have a problem sleeping too much so I'm not much help on sleep aids.

lol alright thanks alot mRae85. I can't stand sitting up till 4am everynight anymore!

Josh -
I had insomnia issues also at 40mg per day. It faded once I got to 20 or so. I did not take any benadryl or sleeping meds because i felt my body had too many pharmaceuticals in it already.

I agree with mRae and others. Load up on vitamins. I take a multi daily and also take Vitamin A, D and Magnesium supplement. It helps. Have your doc check vitamin levels in next blood work.

hey fenway yeah im hoping my body will get used to it aswell.. i need to sleep!!!

Hi

Hi Josh, like you I am new to the forum thing but not new to crohns. I've just turned 25 and was diagnosed with Crohns at the age of 6. My mum always said that I had symptoms though and I have some family history of the disease with my Nana and uncle having it as well.
I completed year 12 and then went on to study remedial therapies for 2 years, then became a massage therapist for 3 yrs. I am now a practice manager for an orthopaedic surgeon.
I am now in a stable condition but have had countless hospital admissions. I used to visit the toilet about 10 before I even left the house of a morning but now it is only about 3-4 times a day.

Things will improve for you. Once the predisone has kicked in and your bowel has been given a little rest it will beb easier for the dr's to get your disease under control.
As for the energy, D does take it's tole on you but I now have iron infusions twice a year and that gives me a great pick me up!
I can't say I understand about not going out. living with Crohns has never stopped me from doing anything. I guess in a way I was 'lucky' to have had it all my life. My friends all 'get' me and it has never been an issue. As for the drinking, well I like to think that you should be able to have a great time without drinking all that much. Most of the best nights out I have had i've been sober! and most of the time everyone else is drunk so you can act the nut and not worry about what they think!! best of luck and I hope your feeling better soon

Hi Josh

Sorry to hear your story. I found the start of the disease to be the toughest time. It should get better for you.

Re the fissures. I'm really surprised your doctor said that you'll have to live with them. I've had fissures on at least three occasions and they've healed every time. Have you tried Rectogesic (sp)? It anesthetizes the area and helps with healing. But even when I haven't used anything, they usually heal up once the diarrhea is under control.

Anyway good luck with everything. I hope things work out for you.

Ill have to look into that RafHam. I dont know what Rectogesic (sp) is but ill check into it! thank you