Newly Diagnosed with Crohns

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Musicalchairs

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Hi Fellow Forum Members,

My names Chris.

I have just recently (2010-11-23) been diagnosed with Crohns Disease.

I'm here to find a way to stay in remission without the need for drugs.

Currently they have me on Prednisolone 40mg to control my first ever Flare Up.

Thanks to the age of the Internet, I have found this forum.

The Internet also allowed me to quickly research Prednisolone, which I'm not sure if I am that thankful for, as ignorance can sometimes be bliss.

From what I have read, and from what I have been told, Steroids have some pretty nasty side effects.

So hopefully they can do their job and then I can taper off them asap.

I have an appointment with a specialist at the IBD department of my local Hospital in 2 weeks time. Hopefully between now and then I can get enough questions and knowledge up my sleave as to get the most out of that meeting.

I am guessing they will assess how well the Prednisolone is working to control the flare up, and then explain what happens next in relation to staying in remition and what drugs they suggest will do that for me.

My goal is to live with this condition with minimal drugs, if drugs are necessary I will need to suppliment my diet with vitamins, to give me what my diet isnt, and to replace what the drugs take away.

Well there are my thoughts 3 days in.

I hope someone can see my thoughts and add there opinion, or set me straight. As a newly diagnosed sufferer I feel robbed of my love for food.

I currently weigh 61kg and prior to 5 days ago I was 67kg.

I've always had a fast metabolism but this flare up and loss of weight with it is rediculous.

Nice to meet you all.

Thanks for reading my thoughts if you made it this far :)

Regards

Chris
 
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Welcome Chris!! I was very skeptical about pred when my son was dxed last Dec.. I have a niece who developed diabetes while taking pred. However, my son, aside from a temporary moon face that you will hear very much about, didn't have any problems with it and has been mostly well since his quick taper on it last Dec.-Feb..

Did you have a colonoscopy/endoscopy? You should ask for the reports for all your tests. Someone on here will be able to translate them for you. I know I needed that!!

Your GI will probably mention some sort of maintenance drug. For my son, it is 6mp which is form of Azathioprine. It's an immuno-suppressor. You could find any drug mentioned in our wiki or do a search on anything at the top of the page. Good luck!! I hope you can keep it in check as naturally as possible!!
 
Thanks for the reply.

I was sent to an ER after visiting my family GP with a Fever & Abdominal pain.
My family GP thought I may have had appendicitis.

As I don't have private health cover, I entered the ER at 7pm, sat around for 2hrs until they found me a temp bed in the back of the ER.

A student took my symptons and put them into the computer system while another guy came and took blood for testing and left me with a needle in my arm for further tests or quick access for a drip.

From that point onwards, every 1.5 - 2hrs I had a new doctor or specialist in the room, asking me the same questions. What are your symptons, how long has this been going on, etc etc.

I was under the impression I had appendicitis, so was quite pissed they were taking so long to sort it all out and get me in for surgury and remove my appendix.

Well at 6am the following morning they found me a room in the kids area of the hospital and started to prep me for a Colonoscopy & Gastroscopy. They informed me of their theory that I was suffering from an inflammed bowel and they wanted to know how bad it was and whether it was Crohns.

At that point I started freaking out a bit, as I had an Auntie in another part of Australia that went in for a routine operation and via a colonoscopy ended up on her death bed with a perferated bowel. She survived but it was touch and go.

Anyway, toughened up, stopped stressing, they put me under and when I woke up they fed me 40mg of Prednisolone and I ate for the first time in 18hrs. As they had me fasting prior to the procedure.

They kept me in overnight for observation, I ended up out of the kiddie ward and in the cancer patient ward. Both wards made me realise I was lucky to be able to walk out of there the following day. Although at this point I did not know exactly what was wrong with me, and was forced to try and sleep until 8am when the doctors did their rounds and visited me with my diagnoses.

I didn't react too well to the news, probably due to the fact that anyone probably wouldnt, but also due to the fact I barely slept, as they fed me Prednisolone at 3pm the day before, and i struggled to sleep prior to 8am the next morning.

Came home, got depressed, swore at the world, and staired at the fridge contents and wondered what I could eat and whether it would effect me negatively.

I got in contact with a specialist at the hospital who I have an appointment with in 2 weeks. She told me today to stay on a low fibre diet, and not to stop the meds.

She explained having to taper off them eventually, and I was not to stop them suddenly, as they are supposed to reset my immune system, so that it will stop attacking my bowel.
She also stated that if I manage to get into remission that I will then taper off the Prednisolone and start a drug to keep me in remission.

So yeh, kinda want to know which foods set me off, i guess thats all part of the learning process.

Once again thanks for the reply, sorry if it was too long, but this is a good place for me to put things into perspective.

To answer your question, I don't have the results myself.
My doctor would and I presume the specialist I will see in 2 weeks will have access to them also.

I remember them saying that I have around 4-5 Ulcers in my Lower Bowel & 1 in my stomach which is small and kinda explains why I have suffered heartburn in the past after eating spicey foods or doughy breads/pasty.

Funny how things start to make sense now.

Regards

Chris
 
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Hi Chris,
Welcome to the forum. I'm also sort of newly diagnosed. For me it was Aug 2010. It still seems like just yesterday, but I am dealing with it pretty well now I think. It will get easier! I had the same feelings, denial, getting upset, etc.. See in Aug I ended up in the ER too, and I though I had a swollen lymph node.. But I was wrong, it was a mass, abscess, and fistula which I had surgery for later that month. I've since seen a few different Dr's.. A Prim Care Phys; Colorectal Sugeon/Specialist; GI Specialist; Rheumatologist. My surgeon/Specialist did a IBD blood test for me too to help confirm. Think its an Exagen IBD special test. It will look at your genes, and it also helps differentiat between Crohns Disease and Ulcerative Colitis.

Well I wish u the best of luck! And hang in there! If you're going through it - research it on this site and I can guarantee u someone somewhere has had a similar issue. We may not all have the exact same symptoms, but this disease0 affects way more than just our tummy's to the other.

Not sure if u do, but 1 thing Ive noticed to really help a lot and wasn't done right away are the B12 injections. U may want to make sure your doc checks these if they r doing bloodwrk anyways. Ah, and I have body aches now too that started after my flare started..


For my stomach and ulcers I take prilosec 40mg daily. Its by rx Generic is Omeprazole.
Mouth ulcers on tongue when flare (not sure if u have these but seems to be common in CD) I use Triaminiclone Dental paste (also by rx).
I'm taking a low dose Prednisone (only 5mg daily), and Apriso for a maintenance drug which I seem to be tolerating ok.
As for food.. I love food and have been eating like crazy for a while, but I had really bad stomach swelling for a while since the surgery too, and I'm sure a problem w malabsorbtion. I'm learning now though that my body works better on a liquid diet. Which is hard for me.. But my body actually hurts a whole lot less. So somedays its meal replacement shakes. It'll give u some nutrition when u can't tolerate food.

Anyways, as I said - wish u the best! And hang in there! If u ever have any questions I'm open to listen or just be a kind ear!
 
I think you have the record for the quickest ever diagnosis! I too was admitted for suspected appendicitis, but they then decided itwas gallbladder, found out it wasn't, discharged me thinking I was faking, readmitted me a week later, admitted they hadn't got the foggiest and ultrasounded all my abdo organs, saw inflammation and then had to prove it was Crohn's! It took 3 weeks to think of Crohn's, and another month before I was scoped, biopsied and officially diagnosed.

Anyway, I digress. I also have (had?) ulcers and find that skins, nuts and seeds are the most bothersome foods for me. I did low res for a while, which really helped, then I have managed to add in most high fibre foods. As for going med free, I wouldn't fancy it, but some people do manage their condition through diet.
 
Welcome to the forum.
I agree that was a very quick Dx!! Mine took 6 months then was wrong at that!

You might want to start a food diary to see what foods bother you. For me its fiber, seeds and nuts. When I am in a flare, everything bothers me. Sometimes a liquid diet is the only way to deal with a flare.

Lots of good information around here and don't be afraid to ask anything, someone has had to deal with it I am sure.
 
Hi guys,

Thanks for all the reply's.

I dont feel alone with this disorder anymore.

I am currently pain free, the only pain I had was lower right abdominal pain when i was admitted to the ER (hence the theory of appendicitus).

That pain was only noticeable when my lower right abdomone was touched or poked.
The first time i really noticed it was when our little King Charles Cavilier, Max, jumped up on me as I was laying on the couch and landed right on the spot. I jumped up straight away but didnt think anything of it until the fever and the GP started poking away thinking my appendix was about the burst 2 weeks later.

You see I had groin pain, also lower right, and had trouble putting socks on or lifting my right leg into pants etc for 2 weeks prior to be diagnosed.

That was actually the reason I booked into see my family GP.

4 days prior to booking in I was fine, then on the day of the visit I went to work and felt very faint.

I had just recently (1 month prior) finished a 12 week cycle of Champix (smoking cessation), so had been drinking plenty of water daily as a non smoker. Had purchased a Stainless Steel canteen to drink from as I had read somewhere that plastic bottles aren't the nicest things to drink from due to BPA levels that can caused brain tumors etc

Anyway drinking water as I do at work, still felt faint, so ate an apple that I had brought with me for a snack. Still felt faint, hour later ate a kiwi fruit. No result, drank more water no result. Asked the boss to go home as I wasn't feeling 100% and he let me go.

I went back to my mums, as no one was home, it was a 35c degree day and they have better air con than me and my partner do. Also my parents place is only 5 minutes from my local GP which I has an appointment with that night.

From 12noon til 6pm when my appointment was I tried to sleep. I hadn't been getting much sleep due to the groin pain I was going to see him about. I would wake up every 2 hours because of the way I would turn in my sleep. It would aggrevate my groin etc. So was pretty tired.

Within that 5 hours I started to realise I had a fever, and had ran to the toilet 3 times with the runs (Big D). By the time I got the my appointment with my GP and he took my temp I was idling at 38.6 degrees body temp.
He attributed that and the pain in my abdomen to appendicitus and sent me to the ER.

The blood tests they did while I was there and prior to the Gastoscophy/Colonoscopy showed I had increased white blood cell count & a very low red blood cell count.

They said the increase in white blood cells was due to an infection somewhere in my body and low red bood cell count was due to me being low in iron. I had always been low in iron though. I am from a Greek Cypriot background and it runs in our genes. I am not Thalassemic though, but I am anemic. This I've been told is also a sympton of Crohns due the loss of blood during B/M.

As for diet and keeping a diary.

I have been eating a low fibre diet by request of the IBD specialist at my hospital. She is the only person I have had contact with since being home and I called her for help dealing with all this yesterday.

My girlfriend and I did our weekly shop last night and we used a Low Fibre Diet pamphlet found on a government website as a guide to our shop.

It obviously isn't a diet made for people with Crohns and as I am flaring at the moment I have decided to stay away from dairy & red meat. Actually my protien will only come from chicken. Vegetables will be skinless & seedless and steamed or boiled. Milk will be replaced with Rice Milk. Pasta & Rice will be the base of most of my dinners.

I better head off, need to have breakfast and take my Prednisolone 40mg.
Took it at noon yesterday and didnt get to sleep til 1.30am this morning.

For breakfast I am having rice bubbles with Rice Milk (So Good brand).
Rice bubbles arent going to give me much nutrients, just curious to see if my stomach can handle them and the Rice Milk to be honest.

Thanks again for listening,

I guess we dont have a choice, we all have to live, who thought eating would become hard :(
 
It does get easier. I know its very overwhelming at first. Your white counts are prolly from the crohn's mine have been high for about 12 years now.
Just keep in mind that everyone has different foods that make symptoms worse, it does not mean they make the disease itself worse just how you feel. You might want to think about adding gatorade to your diet, it adds the electrolytes back in that we loose with the D. Lots of people take probiotics and fish oil to help with crohn's. Some take aloe vera (I personally consider aloe dangerous to us).

Interesting that you had your flare right after quitting smoking. Docs swear crohn's is made worse by smoking but I see lots of people go into flares or had their first one when quitting.

Keep in mind that you have lots of options open to you to try to get you into remission.

Hope you start feeling better!
 
welcome, Chris! i'm somewhat newly diagnosed, too..April of this year. i'm feeling the same way you are right now..it took me til now to realize just how serious Crohn's can be. i had no idea what i was up against..

i hope you get relief (from the disease and meds) as soon as possible!!
 
Without a dietitian and sticking to a low fibre, no red meat & dairy free diet I am doing okay 2 days in on Prednisolone 40mg.

Will see how I go between now and when I see a specialist in less than 2 weeks time.

What do you mean by you know how serious it can be ?
Did you not change your diet straight away or something ?
 
You could also try eggs for protein, boiled or poached are probably the safest form (as fat can upset some people).

A few tips about nutrients: I like to get kid's cereal that is fortified with vitamins. I also take a chewable multivitamin to try to make sure I get as many nutrients as possible. You might already know this, but while you are on pred, and especially if you are going dairy free, you should be on large doses of calcium and vitamin D, as pred can damage your bones. You should also be taking iron supplements to treat your anaemia, especially as you are avoiding red meat.
 
I had prescription supplements called calcichew- d3 forte. I took one twice a day. You might be able to get them over the counter. They contain 1250mg calcium carbonate (equivalent to 500mg calcium) and 400IU colecalciferol (equivalent to 10mcg D3). Chewable supplements are preferable as they are easier to digest. And D3 is preferable to D2. Hope that helps!
 
Thanks for info. I'm writing all this stuff down so I can ask the specialist when I see her in a week and a bit.

Appreciate the info. As your not in Australia, the names of your suppliments may differ here. This info is good enough to give me something to go on though.

Thanks again.
 
Hi Chris, My story sounds so close to yours. I was diagnoised Nov 1, 2010. Trip to ER and stayed over night to have colonoscopy next morning, then found out next day I had Crohn's. They started me on Flagyl drip (Anti-b) and Prednisone. I went home the third day and continued Flagyl pills for 2 weeks. I'm now tapering off the Pred.. My pain was only on my left lower side and now it's gone due to meds. I have only one ulcer, located in that lower left side. I was told I don't need be on any food restriction (thank goodness!)

Like you, I would really like to not be on medication to control this CD but when I read others peoples stories, it looks like we have to be taking something to stay in remission. What A Bummer!

Listed below are the vitamins I'm on to keep levels normal. I go to the DR. Monday to see if blood levels are good. I guess my fear now is that when I finish Prednisone my Crohn's will start to flare up again. I just don't understand what starts it, I guess no one does! For me it's not food, so I'm eating healthy and low fiber. I stopped taking Advil (ibuprofen) and cut back BIG time on smoking. So for now it just turns into a waiting game I guess!

Here's to hoping we stay in remission for a nice long time :)
 
STLGirl, your right, your story is very close to mine.

I will be definately hitting up the next doctor I see with more info on many things but predominately more info on vitamin suppliments.

The 40mg Pred they have put me on (4 days in) has removed the pain from my lower right abdomen.

Sticking to a low fibre diet has kept me somewhat regular/normal when it comes to bowel movements.

At this point I am not sure if foods are the issue. Maybe 1 or 2 are but I am being overly cautious now for the sake of my inflammation.

I am hoping the tiny Ulcer in my stomach was caused by bad diet (Coca Cola) or smoking rather than Crohns.
As I believe that has been there alot longer than the Ulcers in my Bowel cause I have suffered from heartburn due to crusty breads and puff pastry since I was 20.
Started smoking at 17 and have consumed stupid amounts of Coca Cola from a young age.

If so maybe they got it wrong and I only have Ulcerative Colitis and not Crohns.

Wishful thinking never hurt anybody :)

Thanks again for the reply.

I now see how many people this disease effects and I think we all need a pat on the back for having to go through this for any period of time.

Regards

Chris
 
Pred as a great effect on getting flare ups under control, its when you try to stop taking it that many people have issues. Taking steroids for any length of time causes so many side effects in the body so the goal should be to taper off them asap. Most people with crohn's are taking a prescription for the rest of their lives to prevent further flare ups and complications.

Crohn's can be very serious if its not dealt with and the possible complications from the disease. Bowel obstruction, weight loss, lack of vitamins, bone loss, side effects from the medicines, scar tissue, strictures, extra-intestinal complaints but many people live very happy and normal lives with the disease with few times of flares, others are sick all the time it really depends on your body and the way it reacts.
 
Well I'm definately taking it seriously.

Just wish my appointment with my Doctor was sooner rather than later.

The Pred's 40mg seems to be doing their job 4 days in. 5th day tomorrow.

Only on a Multivitamin at this point which probably isn't helping replace what the Pred's is damaging and my body is in need of.

This site is great but it's made me aware I need more tests done to point out which vitamins I'm lacking, which I will need to replenish and also what sets me off (Lactose / Fructose / Gluten etc).

When on Pred's do foods cause a flare/tummy aches ?
Or does the Pred's prevent the food I eat from causing issues?
 
Food itself does not cause flare ups. It can make symptoms worse but does not make the disease worse. If you are not having D chances are the pred is working at healing the inflammation. Maybe, just maybe this will be your only bought with a flare and you will be able to go on happily without other issues!
 
Oh okay.

Well yeh no D.

Haven't been getting to sleep easily though.

Even when having the Pred dosage early with breakfast.

If that's the only issue at this point, I'm pretty happy then.

Stress can play a major role when it comes to a flare ?
 
Stress messes with my guts terribly. Does it cause a flare? I don't know for sure, but it sure adds to one. Insomnia is one of the side effects from Pred, you can try things like melatonin to help with it or benedryl.
 
I called my contact at my local Hospital yesterday to ask her when my appointment with my doctor was, as they said they would contact me to make an appointment but never did.

She has me booked in for the 14/Dec/2010.
She wants me to get there a bit earlier for some
Blood tests at Pathology and then meet my doctor to discuss stuff.

I asked what my blood work showed from my initial visit and she said that I have depleted pretty much all of my Iron stores in the time I was undiagnosed.

She said there is a good chance I will need an Iron Transfusion to replace what isn't there. She explained that iron supplements would take too long to replenish levels in a person without Crohns, let alone a person with. So that would be a way to get my stores back to normal levels.

I asked about my other vitamin levels, B12 etc and she said that besides the Iron and the increased White Blood Cell count when I was admitted to the ER with inflammed bowel all she knows is that the Crohns is in my Ileum and that the chances of my other vitamin levels being low are high.

So more bloodwork prior to next appointment.

She did tell me something about a chewable vitamin supplement called Caltrate ? Vitamin D and Calcium ? She stated that being on Pred long term (8weeks+) would start to deplete my levels of these 2 vitamins, after my questioning of course.

So by the 14th, my next appointment, will also be my 20th day on 40mg Pred.

Such a learning curve
 
WELCOME TO THE FORUM CHRIS!​



welcome.jpg
 
I agree Chris, This place is a God send!
I went to the Dr today and we sat and talked about all my options. First he is having me step down today to 20mg a day on Prednisone. So taking it in the AM, and hopefull a full nights sleep is on its way!! YIPEE! Then we talked about getting on Remicade or Imuran or possibly both. He said a study was done on people who took both did WAY better then those who were on one or the other. For some reason I still have a fear of getting on Remicade. And yikes the expense of Remicade is enough to scare you away! Then he ordered a bone density test and a huge blood work-up (gee they took 7 viles). So now we wait to see the results and go from there!

Chris, I'm about 2 weeks ahead of you but you and I are moving right along together with tests and Dr Appts and trying to figure this all out! lol
 
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Wish you all the luck in the world with the results.

You are 2 weeks ahead, I'll keep this post updated as I'm updated.

While you have been on Pred have you had any side effects other than trouble getting to sleep ?

I have been lucky enough so far not to have experienced any other than that mentioned.
 
The bad side effects I have noticed are the sleeping as we mentioned and just recently my face is getting a bit puffy, I look like I just got my wisdom teeth removed!!! But the Dr said that would go down as the Preds decreased. The good side effects are I'm a crazy women with TONS of energy. I think I have cleaned every inch of my house and organized every drawer and closet we have! I'm also a baking and cooking fool. Doing things I have never done before like making jams and my kids adore me because I'm baking all kinds of cookies and sweet treats. I have torn down wallpaper that I always hated and totally repainted the whole bathroom. I'm about to strip this gosh awful varnish off a door and paint it. One morning I was outside blowing leaves with our blower at 8am. See what I mean by a crazy women? My husband just laughs at me with amazement but to be honest, I adore this new found energy and passion. It will be sad when it's gone!
 
Okay 2nd lot of Quoted text below is where I am currently at, with information I have gathered myself by asking the right people questions (Doctors/Specialists).
Still very early days.

1st lot of Quoted text (coming up) you have my very first post in this thread.
Amazing what 5 days / info from DR's and this forum has done for my knowledge levels regarding this newly diagnosed condition

Hi Fellow Forum Members,

My names Chris.

I have just recently (2010-11-23) been diagnosed with Crohns Disease.

I'm here to find a way to stay in remission without the need for drugs.

Currently they have me on Prednisolone 40mg to control my first ever Flare Up.

Thanks to the age of the Internet, I have found this forum.

The Internet also allowed me to quickly research Prednisolone, which I'm not sure if I am that thankful for, as ignorance can sometimes be bliss.

From what I have read, and from what I have been told, Steroids have some pretty nasty side effects.

So hopefully they can do their job and then I can taper off them asap.

I have an appointment with a specialist at the IBD department of my local Hospital in 2 weeks time. Hopefully between now and then I can get enough questions and knowledge up my sleave as to get the most out of that meeting.

I am guessing they will assess how well the Prednisolone is working to control the flare up, and then explain what happens next in relation to staying in remition and what drugs they suggest will do that for me.

My goal is to live with this condition with minimal drugs, if drugs are necessary I will need to suppliment my diet with vitamins, to give me what my diet isnt, and to replace what the drugs take away.

Well there are my thoughts 3 days in.

I hope someone can see my thoughts and add there opinion, or set me straight. As a newly diagnosed sufferer I feel robbed of my love for food.

I currently weigh 61kg and prior to 5 days ago I was 67kg.

I've always had a fast metabolism but this flare up and loss of weight with it is rediculous.

Nice to meet you all.

Thanks for reading my thoughts if you made it this far :)

Regards

Chris
Click to expand...

Where I'm @ Currently

~Chris

Diagnosed with CD: November 23rd, 2010

Currently prescribed:
Prednisone 40mg - Commenced 25/11/10

Side Effects:
Trouble getting to sleep, even when taking meds prior to 8am.
Probably need more exercise. Just don't want to lose any weight doing it.
On the other hand, may not be a bad thing, as have managed to paint 2 rooms in a newly purchased established home. Partner isn't complaining :)

Next Appt:
2010-12-14 - Gastroenterilogy Consult Clinic
2010-12-21 - Dietition

Supplements:
Multivitamin Capsules $20AU
(Bought 4months worth)
NB: In hindsight should have bought chewable.
The amount of supplements each capsule contains is minuscule.
I understand now that my body has had a hard time extracting these essential Vits/Mins and that has attributed to my moods (B12) and tiredness (IRON) over the last 2 years atleast.
Awaiting next lot of Blood tests to confirm which vitamins and minerals I am actually low on.
Iron transfusion has been mentioned as a possibility after 1st visit on the 14/12. As it has been explained that my iron 'stores' have been depleted due to the amount of time I was undiagnosed.
Note to Self : Buy Chewable / Liquid Supplements when possible.
Click to expand...
 
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Hey Chris!
Well, since I'm about 2 weeks ahead of you, I thought I would tell you about my experience with tapering off Pred. I started at 60mg and felt no side effects while tapering UNTIL this week when I went from 30mg to 20mg. My body aches, muscle cramps, headache that Tylenol doesn't even touch. ( Excedrin finally did though) From what I read, this is all very normal but it's not fun. Pain has returned a bit in my sigmoid area of my colon, so I will be calling my GI today, he wants to know about it. He doesn't want me sliding backwards one bit. I'll let you know what he says
 
Sorry to hear your experience hasnt been pleasant.

Thanks for the update though.

I have been okay on a low fibre, lactose free diet while on Pred's.

I received a letter in the mail from the IBD Clinic which states which Blood tests the Pathology department will be doing for me prior to my first appointment with my Doctor.

From that point onwards I am no sure what to expect other than a visit to a dietitian at some point for advice on what I can eat once I've tapered off the Pred's.

From your Colonoscopy & Gastroscopy, did they tell you how many ulcers you had and where they were ?
 
I had one ulcer and it was located in the sigmoid area (the end of the colon) BUT my colon was so inflammed at that area, they couldn't do a full colonscopy so their might be more but I doubt it, since I have no pain anywhere else and the CT scan didn't show any other areas of inflammation.
Since my troubles are so low in my colon, I have no food restrictions. (Thank goodness - cos I love Mexican food)

I'm so glad you are doing great right now. I wish Pred wasn't so bad for us.......cos it's so good for our Crohn's. I'm really missing that great energized feeling you get and no pain anywhere! Maybe I'm a Pred junkie! he-he!
 
I see.

Well I mustn't have been as inflammed but they definately found more Ulcers than they did with you.

From memory I believe they said 4 in my Bowel and 1 small one in my stomach.

If they put you on 60mg to begin with, well it would make sense that you were more inflamed than I was.

At the same time though, am worried they found so many.

Not much I can do though besides take the Pred's and wait till my first appointment.

I have been told about a Breath test that can be done for food intolerance.

It involves swallowing a shot of say pure Lactose / Fructose / Fibre. Monitoring the effect it has on your body (cramps / runs / pain) and then breathing into a machine which measures how bad your body reacts to the stuff they make you digest.

If that's something I have to go through to get my diet right when or if I get off the Pred's, i'm not looking forward to the semi self harm.

Really hope my diet isn't effected too badly.

I'll keep you posted.

Thanks for doing the same.
 
Haha

Yep, was unofficial until now.

It's currently 0:15 (AM) - Pred Effect

Love the rush during the day. Helps with work as I am on the sales floor selling TV's / Whitegoods / Small Appliances etc.

Helps with the gift of the gab. Never needed the help but don't mind it.

Will probably miss the Pred's.

Although it's my 4th year in the job and never needed them prior.

Damn drugs.
 
Update after first appointment since diagnosis

Okay..

14/12/2010 & Just had my first meeting with the IBD Clinic at my local hospital in Melbourne, Australia.

Doctor asked me questions about how I have been feeling etc.
As I havent had any side effects besides feeling energized due to the Pred's he has decided to let me taper off them over the next 2 months or so.

I had blood work down the day prior to the appointment and it showed that I was very low in Calcium (Score/Level is at 27, should be around 87).

So the next 6 weeks prior to the 1st of Feb will look like this for my case.

1st & 2nd Week
35mg Pred's Daily
Imurin Half Tab Daily
Vitamin D Suppliment (2 Liquid Capsules Daily)
Blood test required to monitor levels of Imurin in my system prior to starting 3rd & 4th week, which will look like this..

3rd & 4th Week
30mg Pred's
Imurin Full Tab
Vitamin D Suppliment (2 Liquid Capsules Daily)
2nd Blood Test to once again Monitor Imurin levels prior to starting 5th & 6th week

5th & 6th Week
25mg Pred's
Imurin Full Tab
Vitamin D Suppliment (2 Liquid Capsules Daily)
3rd Blood Test to once again Monitor Imurin levels prior to next appointment on the 1st of Feb 2011.

This, I am told, will continue in 5mg drops in pred intake until I am only on Imurin and what ever suppliments I need.

The Doc stated that food will not make my condition worse, though some food will effect me and I will learn to stay away from those foods.

He described my condition as Mild (In the Middle of Low & Extreme) and said I was lucky they picked it up early (Age of 28 ?)

I do have an Ulcer in my stomach though, which is normal he says, for people with Crohns. Only ill effect I have had since being diagnosed occured when drinking pineapple juice. Hunched over in pain holding my gut for an hour, felt like I had drank battery acid. Won't be doing that again anytime soon.

So all in all, good news.

I asked about whether or not I will still feel this energetic when off the Pred's and he stated that the reason I feel energetic IS NOT due to the Pred's giving me energy (speed effect) its more due to the fact that my body isn't fighting the inflammation as much as it had been in the past while undiagnosed. So my white blood cell count is therefore lower and the energy levels I am feeling is more due to the fact that my body isn't at war with itself.

He stated that if the Imurin does its job the way it is supposed to, and I taper off the Pred's, if my body isn't fighting this war constantly and I am eating well & supplimenting what my body lacks, the energy levels I feel now should remain.

Looking forward now to getting off the Pred's and back to a relatively normal life. Normal = Balanced, as from what I have been told, experience and felt over the last 2 weeks, by body has been out of wack for quite awhile.

Thanks again for listening, hope this offers some hope to someone/anyone out there that needs it. As i did since diagnoses and this forum has helped heaps.
 
Good to hear you are starting to feel better. Hopefully your prednisone taper goes well. Good Luck on the Imuran. I personally can't take it, but many have quite a bit of success with it!
 
It is something like a one in 400,000 chance of getting pancreantitis. When I went to the ER for it they didn't even want to test me for it even though I had the symptoms. I forced them too do the blood test after a doctor told me "you dont have that you dont even drink" a different doc came in to say "your ___ are raised you have pancreantits, we are going to move you to a room" so don't be too afraid of it, I am an all around medical oddity it seems.
 

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