Hello

Hi All,

Im new here. First off I wanted to say what a great forum this is and a great bunch of people you all are.

I have been recently diagnosed with Crohns/UC. They are not sure which it is yet. It stared about 10 years ago with blood in my stool on irregular occasions. The Doc thought it was just hemorrhoids but couldn't see anything with a sigmoidoscope. Over the years Ive had mild bouts of D and C and just about always bloated. My job means I spend about 30 weeks of the year traveling, I just put it down to eating in different restaurants all the time. The last few months I have been having urges to go to the toilet and the only thing that would come out was blood and mucous so I went off to the Doc again. He sent me to a Proctologist who booked me in for a colonoscopy where they have diagnosed me with either Crohns or UC.
I was then put on Pyralin which made things a lot worse for me. Started getting stomach pains and strange feelings in my gut accompanied by extreme fatigue, headaches, bloodshot eyes and not being able to think clearly about anything. After a month I finally got to see a GI who changed me over to Pred 25mg/day and Pentasa. Things are starting to improve now as I adjust to all these meds. I am still confused a little over all these meds as I feel worse now than I ever did before. Im not sure if that is the natural progression of Chron's though.
Off to have a blood test tomorrow to see if they can narrow it down to either Crohns or UC.
My biggest fear at the moment is if I will still be able to do my job. I love what I do and am supposed to be starting a new position next month looking after Asia Pacific which will mean a lot of travel. Does anyone here travel lots with Crohn,'s? If so I would love any advise on how to make it easier/better.
Regards
Paul

Hi Paul - another fellow Aussie on here...yay!

I can't really help with much especially the travelling thing...I'm only recently diagnosed too and am still learning all about Crohn's/Colitis...been on 3 different medications now so hoping things will start to get better.

Hopefully someone will come along with some answers for you.

But for now, Welcome to the forum - there are a great bunch of people on here with lots of experience with this disease and who might be able to offer you some advice...

Good luck with it all...

Hi Paul,

Welcome to the forum

While it's still very early in its development, a wiki article regarding [wiki]How to Travel with Crohns Disease[/wiki] has been created that may have some helpful ideas for you. And I'm sure others who travel will be along to elaborate further.

Hi Paul and :welcome:

Sorry can't help with the travel side of things and I imagine you would be talking about air travel and ?car travel as well. Roo is in remission with her CD but has short bowel syndrome and she manages to travel with no issues but that is only occassional trips. Are you seeing a GI who specialises in IBD?

If you haven't already had a look at the Crohns and Colitis Australia website here is the link............

http://www.crohnsandcolitis.com.au/index.php

There's heaps of support and info here so I hope you stick around and please keep us posted on how you are doing.

All the best,
Dusty

Hi Paul and welcome!! All the advice I've seen on here pertaining to travel is to eat safe foods for a couple days before flights and carry extra items in your carry on in case of "emergencies". I don't think that's gonna work for you unless you eat safe foods all the time. Hopefully, you'll get through this flare and only have a very mild case of CD/UC and this won't be much of an issue for you!! Good luck, I hope you stick around!!

Hi Everyone,
Thanks for the responses. Yep Im another Aussie
Thanks for the travel info, hopefully with some experience I can contribute to it.
As for safe foods, I'm slowly trying to figure out what is safe and what isn't. Although the Prednisolone is making it difficult because I keep wanting to anything and everything. But I am learning from my mistakes.
I guess the good thing to come out of this is that I'm now eating healthier than I ever have.
Thanks
Paul

Ive got to say that my crohns actually felt worse once i was diagnosed. whether that was down to stress of knowing, medication, caught at the right time or just noticed it more i dont know. Took about a year to start settling down, still have flares but its been the 1st time ive felt "normal" for ages

Remember that healthy for normal people may not be healthy for us.
ie corn, lettuce etc can set people off (not all but it seems a fair few)

Hi Rygon,

Yeah I realise that some "healthy" foods are not good for us. I've known that beef seems to upset me for a while. I had some recently to try it again and I couldn't eat for two days after having it. Funny thing is all other meat seems to be fine. I also used to drink a lot of soft drinks like Coke which Ive completely cut out. I'm still not sure on milk yet, but I thought I would cut that for a little while and then ease back into it to see how I go.
At first I was a little overwhelmed about how to find out what foods might be causing problems, but Ive been using the SCDiet as a rough guide line and it does seem to make things better.
Next on the list is to quit smoking. I have set tomorrow (Saturday) as my day to stop smoking.

Paul

Good luck with quitting the cigs. Paul!! I grew up on a tobacco farm!! If you knew all the sh@% that was sprayed on tobacco you would've quit ages ago!!! It is truly a nasty crop!!

Hi Dexky,
Yeah I agree that the smokes are bad and like most smokers really do want to quit. On Saturday i cut back and stopped on Sunday. Unfortunately by mid Sunday I started bleeding really bad and my stomach was going crazy. I have read that this can happen with UC when you stop smoking. Apparently the nicotine can slow bleeding. So for now I have decided to keep smoking (yeah i know its a stupid thing to do). Thankfully the bleeding has almost completely stopped by this morning.
I have also increased the Pred as recommended by my GI if I didn't start seeing improvement by the weekend.
I will give the Pred another chance to work before trying to stop smoking again and if that fails I will discuss options with my GI at my next visit. Maybe I can use patches to slowly get off the nicotine.

Paul

I too noticed that I got worse once I was diagnossed
but then went into remission for several years, just maintaning maintenance drugs
then my current flare started and had several bouts in hospital I havnt worked for over a year now because of it
but now on a drug trial which is showing great signs for me so hoping early next year life can resume as per normal an get back to work

as for travelling well I've never travelled by plane in a flare etc so can't help there, but last summer in the peek of the heat I traveled from Adelaide to Canberra by car (no air cond) and I did it ok
just remember keep your fluids way up- jus constantly sip don't gulp
an not just water mix it up a bit some water and some lucazade or powerade or gastrolite etc helps heaps
also before traveling keep all meals small an bland ie boiled/mash potato an steamed chicken no rich sauces or greasy type foods

good to see another fellow Adelaidian on here lol
good luck
it helped me travel

Hi Paul,
Hope you are feeling better.. And hope they get it sorted for u soon.. as far as CD/UC. I'm newly diagnosed as well, and still have the good old tests I will inevitably have to take.. YAY.. ..anyways, i'm stuck for now recovering from this 1st surgery. I'm glad to hear the change of meds is helping a bit, but make sure to get plenty of rest! Your body needs the extra time to recouperate from all the meds.. i know how you feel, i'm taking plenty myself.. ((hugs)).. but it will get better... as for the smoking... try to taper off slowly rather than cold turkey. I use to smoke myself (sshh..) for years actaully. And I quit in May of 09, and haven't looked back. It was easier for me to slowly decrease day by day.. not to mention it is expensive! Most importantly its not healthy. And u can do it!
Wanted to stop in and say hello.. today.. And I hope u have a great day!
Best Wishes

Yay for Australians! hehe

I live in a small country town on the border of NSW and QLD and I often had to travel from out here to Brizzy (being from there originally)

I used to carry the obvious (loo paper lol) and moist towels for 'clean ups' But I wasn't traveling by plane, so really have no advice for plane travel.

(SHHH I'm a smoker also) and word of advice. Don't try what I did the other day. I thought it would be a great idea to chew a chewy instead of having a smoke. 21 chewing gums later... OWWIE forgot the laxative effect of chewy.. silly me!

Good luck with everything and keep us posted xoxoxox

Hi Rob,

Great to know there are other Radelaidians on here

That sucks that you have been unwell for so long. The new drug you are on sounds promising from what Ive read on the forum. I hope it is all going well for you and you can get back to working and enjoying life again soon.

Who is the trial being done through? How did you hear about it? Not that I need to be on it yet, but its good to be aware about how you find out about such trials.

Cheers
Paul

Hey Girlygirl,

I hope you are recovering OK. I'm starting to get used to all the blood tests now and as was unconscious for the colonoscopy (thank god ) Its just the waiting game now to get into the GI and get the results back.
I know what you mean about resting up. Every time I start feeling better I start trying to push myself and make it worse again. The good thing is now, since Ive been using Ensure (I love this stuff) and increased the Prednisolone, I seem to be getting a lot better. I'm back at work which takes a lot of stress away. I am taking the return to work a little easy and am not ready for travel yet, but that's cool as Ive been able to get other people at work to cover any interstate trips.
As for smoking, I'm still a slave to the cigarettes. I will discuss it with my GI when I see him in a few weeks before I try again.
Regards
Paul

Hi Treehugger,

Yep another Aussie. We will be taking over soon, although I think that's probably a bad thing.
Thanks for the tip on the chewys, those things can be more harmful than the smokes

It sounds like you are living in a good part of the country. Its been so cold here in Adelaide. I cant wait for summer. Although ill just complain its too hot then.

Cheers
Paul

Hey Paul
I found out about the trial during my last stay in hospital
I was given a choice an illostomy bag or try a drug trial
so I chose a trial, of the two drugs on offer I chose vedo- just read more on vedo, wasn't alot info or good news with the other one

I'm having treatment in the RAH, I just made it onto the trial before they closed it to cd sufferers, it's apparently still open for uc

it's slow goin for me but it is improving , I've basicly quatered my problems ie number of bm's per day
so thts a good start for me, at the worst of it I was goin literaly every 5-10mins
now it's like first hr or so when I first get up, and when I try goin to bed

hope you can get yours under control to be able to continue ya traveling for work etc

HAHA SSV!
I shall be doing the same!! hehe

Just an update.

Went to the GI again today. Finally got my diagnosis as Chrons.
The Pred 37.5mg and Pentasa haven't been doing as much as he expected. So now he wants me to up the Pred to 50mg/day, keep taking 2g Pentasa twice daily and start on 50mg of Immuran a day and Vitamin D.

I guess I have to look on the bright side of things. I now have no excuses for smoking and will quit this weekend. And now Ive lost enough weight to find out I did have stomach muscles all these years and now I can see them :ysmile:
Finally the spring weather is here in Adelaide.:applause: and its a long weekend.

Cheers

Paul

Hey Paul,

Don't really want to say congratulations on your news! :lol: but it is good to know that you have answers and can now tackle it head on. Good luck with knocking off the smokes!

Gotta agree 100% with the arrival of spring and a long weekend.................Woohoo!
:banana::banana::banana:

Take care,
Dusty

Hey Rob,

Glad to hear you are showing response to the Vedo. I did see some of your posts about Vedo in another thread. Sounds like it was the best way to go.

I hope things keep improving as the trial goes on. Do you get the option to continue the Vedo when the trial ends?

Ive been lucky at the moment with work. I was supposed to be going to Bangkok in October, but there have been delays and wont have to go until December now. Ive also managed to rearrange some other work and only have to do a week long trip to Darwin and then Perth before then. At least they will be the trial runs before going overseas.
BMs are mostly under control now with only 1-2 per day, but I still get a lot of blood so I should be good to travel.

Hope your still making improvements on the Vedo and enjoying the better weather.

Cheers

Paul

DustyKat said:

Hey Paul,

Don't really want to say congratulations on your news! :lol: but it is good to know that you have answers and can now tackle it head on. Good luck with knocking off the smokes!

Gotta agree 100% with the arrival of spring and a long weekend.................Woohoo!
:banana::banana::banana:

Take care,
Dusty

Click to expand...

Thanks Dusty,

Yeah its good to finally know what I have. I just have to learn to deal with it the best I can, and I'm learning fast

Hope you have a great weekend.

Hey Paul glad ya got a result
sorry to hear it's crohns mate, hopefully you can get it under control enough to hav a normal life

yea mate this weather is great was gettin sick of bein cold all the time

vedo has been workin well
a tad slow but I'd rather slow than not at all
I went from goin litteraly every 10mins to about 10-12 times a day
so yea pretty chuffed about that

:welcome:Hi Paul, yes another fellow Aussie!!! We seem to be joining the ranks lately. You sound like you're on almost the same as me (Pentasa, not doing anything, moved to Pred and Aaa (tho I'm on 45mg of Pred currently) - and hope you have as few side effects as I currently do.

Thank god for the long weekend, and not just 1, but 2 football grand finals this weekend!

As for travel, I travel a little bit (for leisure, not work), and I find that if I stick to a relatively bland diet (not Asian food, tho I like to travel in Asian countries), I'm not tooooo bad. Campbell's cream of chicken soup seems to do wonders for me! Mum has been feeding it to me when sick since I was a kid and it sorts me out every time!

Hiya Paul,
Hope you are feeling well! And have a wonderful long weekend!