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Posted 5/2/2010 4:18 AM (GMT 0)
 

Hi everyone

Just wanted to introduce myself.  I am a 46 yr old female from Sydney, Australia who was diagnosed with Crohns Disease early April 2010.  I am still getting over the shock of being diagnosed at such a late age, but from what I gather this can occur at any age!  ( I have a sister and cousin with Crohns also who have been battling with it for 20yrs - so I guess I know a little about the disease)  However I have come to learn a whole lot more since my diagnosis.  I have been pretty much reading anything I can get my hands on to inform myself about this disease and to be prepared and involved with my treatment along with my GI specialist.

The beginning of this ordeal was horrible as it took a couple of months to diagnose and a couple of stints in hospital (had to have meds given intravenuosly as couldnt keep anything down due to the horrendous nausea (is that normal??).  Am currently on prendisone (at 25mg currently - started at 50mg for a week, then 40mg for a week, then 30mg for a week now at 25mg) and have an appointment to see my GI specialist the week after next and he has mentioned that he will probably be starting me on Imuran next!  I realise that drugs play an important part in treatment of this disease - the prendisone is helping me so much now - things have improved slowly but surely from when I was first diagnosed.  Its just reading about the side effects of these drugs that freak me out a little (still new to all of this!).  I have also changed my diet drastically from how I used to eat - I  was also diagnosed with a hiatus hernia, and mild chronic gastritis (which was causing reflux)  I have been pretty much been following a low residue diet and gradually adding different things back in one at a time to see what effects me.  I haven't eaten red meat in two months, changed from skim milk to rice milk and not eaten as much wheat as I would normally (even though apparently I am not allergic to wheat. Cannot eat anything acidic - due to hiatus hernia/reflux (which is hard coming from an Italian background - tomatoes, garlic and onions were pretty much the staples of all my dishes!!)

My Crohns seems so different to my sisters and a lot of others from what I read.  I dont have lots of diarreah (actually was very consipated at time of diagnosis), no blood, I am overweight (although I have lost a lot since diagnosis which is good because I have to lose weight for the hiatus hernia!)

I was diagnosed 10yrs ago with IBS (they couldnt find anything in colonoscopy at that time) and so I have thought all these years that that was what was wrong with me when having bowel issues! Although my GI says you can have both together and that big people can get Crohns too!

Anyhow just thought I would say Hi - this seems to be a great place to find out info.

from

DREAMLADY

Predisone 25mg, Somac 40mg, Coversyl 10mg

 

Post Edited By Moderator (Nanners) : 5/2/2010 9:15:56 AM (GMT-6)

Posted 5/2/2010 4:35 AM (GMT 0)
Hello and welcome! Please stick around, read through the post and contribute when you can. I have learned so much about my disease since joining this forum and I had read and researched everything I could find on it. Everyone here is extremely supportive.
Posted 5/2/2010 10:52 AM (GMT 0)
Thanks for the welcome! I am already learning so much from reading the posts on this site, which is helpful when dealing with this disease. Need all the support I can get right now.
Posted 5/2/2010 2:10 PM (GMT 0)
Hi and welcome. Sorry you need this place but glad you found us. Lots of good people here and while we dont always have an answer we always care. The site goes pretty fast so if you dont get the answer you need dont be afraid to bump your post up to the top again . That way the right person will see it and hopefully have some good advice . Being from Sydney and having crohns, hmmmmm, guess that would bring new meaning to ,,,trouble down under , A ?
Posted 5/2/2010 3:23 PM (GMT 0)
Hi Dreamlady and welcome to Healingwell. We have a few other folks here from Australia too, in fact one of the Crohns moderators I am sure you will get to know well is Ivy6, she will probably be on more while you are since you are from the same area. My Crohns is pretty similar to yours. I suffer with more constipation and when flaring I have more nausea too. There are varying types of Crohns, so its no wonder yours is different from your families. I have what is called the stricturing or scarring type of Crohns, I tend to suffer with more scar tissue and adhesions. But others have the inflammatory type, some have fistulizing. As far as the Hiatal Hernia, many of us have them too. The best treatment I found to help with the acid reflux/GERD symptoms is taking my Prilosec, it really helps to allow me to eat more things and takes the heartburn and upset gut feelings away. You might want to talk to your doc about one of the PPI meds.

I stopped eating red meat about 2 years ago myself. Red meat is hard even for the healthy gut to digest, I found it was just better for me to stick with chicken, turkey and fish, as the red meat kept giving me obstruction issues. I am also currently in remission and have felt best following a modified low residue diet all the time. Its what works best for "me".

I hope you will find the support you are seeking here. We have a wonderful and supportive group of folks all trying to live with the same darn disease. I look forward to hearing more from you.

Hugs
Gail*Nanners*
Posted 5/2/2010 3:34 PM (GMT 0)
OMG, Sniper that's funny! I just came very close to spewing my smoothie on our computer!


Hi Dream Lady, I send you good vibes from Canada (since I'm close to the "top" of the world, is that why I got crohn's in my duodenum first?? still laughing).

I am so sorry to hear you've joined our ranks. My heart goes out to all the newly diagnosed, I'd be ever so happy to have no one else join our little potty club.

I'm glad to hear the prednisone is helping you, this is good news along with the bad.

I would go from constipation to diarrhea and back again, so it can be this way too. Also I never bled red, though I did pass a couple of black stools indicating digested blood, which since for me crohn's started higher up in the digestion, made some sense. Still, I'm not much of bleeder, never have been.

Symptoms can be very unique, and it's not a contest, since the symptoms suck no matter which ones you have.

I hope your sister and cousin can help you through, and that you stay in touch here too.

Dreamlady is a great moniker, and I wish you a speedy return to health.

Best,
Posted 5/2/2010 10:30 PM (GMT 0)
Thanks so much for all the welcomes and sharing of your experiences with Chrons. Its nice to know that some of you have the same symptoms as me (doesnt make me feel so alone!). I will take all your suggestions on board! At the moment not feeling too bad - predisone is obviously helping along with the diet changes I am sure. I know predisone is helpful but I also know about the pitfalls of this drug (my sister was off and on it for years and I know it has had a lot of negative effects on her body also (she also took methotrexate as well). Just feel as though things are starting to settle down a little but am quite nervous and apprehensive about having to start on Imuran soon (although I know this has to be done!!) - not sure how I will tolerate it, guess noone does know how they will tolerate a drug until they try though right?

Thanks Nanners for your advice - at the moment am taking somac for the reflux and along with the change in diet and eating small quantities of food more often, plus losing weight, this seems to be helping with the relux/hiatus hernia.

One again thanks for all your responses, makes me feel good to know people care!

DREAMLADY
Posted 5/2/2010 11:33 PM (GMT 0)
Hello, and welcome aboard the best on-line support group for CD going! Sorry you need us though.

Sincerely,
Matthew
Posted 5/3/2010 7:39 AM (GMT 0)
Welcome to healing well from the northern part of the commonwealth eh! We do have others from austrailia the one that comes to mind is Charlee along with Ivy. Do let your sisters know about us the more the merrier.
Posted 5/4/2010 4:01 AM (GMT 0)
Hi Dreamlady, welcome to the forums.

I am 24 and have had Crohn’s for five years. I live in Brisbane but grew up about an hour from Coffs Harbour on the NSW mid-north coast. I’m so glad you’ve found these boards because they have quite literally saved me on many occasions (physically and emotionally) – the support they provide is invaluable. Sometimes it can get quite depressing, reading about all of the problems board members experience, but you must remember that most people who are in healthy remission are probably not posting very often on the boards.

I was in a horrible flare since being diagnosed up until October last year. I have aggressive Crohn’s colitis and my ongoing flare resulted in many complications and painful surgeries. My advice would be to find a fantastic gastroenterologist (like I have finally been able to do). I hope the GI situation is better in Sydney than it is in Brisbane!

Again, welcome to the boards!!
Posted 5/4/2010 11:29 AM (GMT 0)
Hi Dreamlady,

Charlee here, I am Australia too - about 5 hours drive from Sydney. I too am newly diagnosed with crohns and am dealing with exactly what you are. Fear, worry, what the future holds etc etc. I started on 50mg prednisone a bit over 3 weeks ago and am now down to 25mg daily. My GI wants to start me on imuran also and like you, am very concerned about the side effects. He's wanting to start me on this if just under 2 weeks. I have learnt heaps from these guys and joined the forum because I read the posts and there appeared to be so many genuine and friendly people willing to help almost 24/7. You can write in when your up and when your down and there's always someone who will listen. I am glad to hear you have close family that can empathise with your condition. This, I am sure will prove invaluable to you. Anyway, welcome and post at anytime and know there are people not only around the world but not too far away that share your fears, doubts and concerns with you. Carry that with you and it will help, enen in the isolated times.


Keep in touch

Charlee
PS Phoebe - nice to know your only up north!
Posted 5/4/2010 8:27 PM (GMT 0)
Hey Charlee, I AM just up the road!! :) Where abouts are you located, if you don't mind me asking? My parents live about 5.5 hours from sydney!
Posted 5/5/2010 1:12 AM (GMT 0)
Thanks for the welcome guys. Its nice to hear from others in the same condition - I have been finding these boards of immense help! Nice to know others like yourselves Phoebe and Charlee are close by (ie in the same country as me). Charlee we sound as though we are going through the same treatment at the moment! I started on pred - 50mg for a week, then 40mg for a week, then 30mg for a week then down to 25mg which is what I am currently on. Will be seeing my GI on Tuesday next week and he has suggested Imuran as next drug (I can relate to how you feel about starting this new drug too! I am wondering if I will incur any of the side effects that I have been reading about - so far I seem to have escaped most of the ones that I read about for predisone so hopefully I will be oke on Imuran too - who knows!!) All a new learning curve, but I feel much more relaxed about it then when I was originally diagnosed (was freaking out quite a bit at that time) Reading the posts on this board and I joined the Chrons and Colitis Australia association, who sent me info has helped in dealing with aspects about this disease. Just great getting support from everyone here. Once again thanks guys

DREAMLADY

Currently Pred - 25mg, Coversyl 10mg, Somac 40mg (starting Imuran soon!)
Posted 5/5/2010 1:45 AM (GMT 0)
Dreamlady,

Charlee again, we certainly sound like we are pretty much on parr with our current treatment and pending treatment. I am going to see my GI in a couple of weeks and am going to ask him if imuran is the best option at the moment. I think what you've got to do is explore as best you can about treatments that follow the initial commencement and completion of your prednisone. Even though prednisone is hard hitting and tends to bring the inflammatory process down rather quickly, and intun makes you feel better, its not a drug you can stay on long term because of the severe repocussions it can have on your system. However, an immunomodulator will also come with its complications. What you need to determine with your GI if the complications are of somewhat minor consequence or something that is going to make you worse. These guys on the forum have experienced a whole range of drugs and therapies and from what I can make out have been thru quite a few trial and errors. I am going to ask my GI about LDN - low dow naltraxone, which is like prednisone but claims to have fewer side effects. Not sure what he'll say, but worth the question. The go is to be on a medication that will hopefully keep you in a remissive state for as long as possible. Unfortunately, you may start a drug that does just this, and over time, it wears and the crohns flares again. In this case, you may need to change to another medication. I have personally had a rough couple of days, even on the pred. I am going to post out today with my concerns and although I am a usually happy and engaging person, I am struggling to keep my chin up at the moment. Dont get scared about those who write in wanting advice and help. Its just a part of the treatment process to boost your emotional downfalls and vent when you need to. We all have happy times and times of need when this forum is absolutely invaluable. Keep us up to date, as I will with my next step too.
Dont hesitate to keep in touch. It is helpful (mentally and emotionally) to know there are other nearby that are going thru the same, but dont underestimate the power of the rest of the world!
I am sure you will make some good online friendships. Keep in mind we are all real people and not just words on a screen.

Talk to you soon.

Phoebe - 5 hours southwest of Sydney, arent you in Brisbane?

Charlee
Posted 5/5/2010 2:12 AM (GMT 0)
Hi there Charlee (again) and Dreamlady,

Ivy here - another Aussie.

Please don't be too surprised if your doctor says no to LDN. Remember that doctors here operate under tighter restrictions than those in the US, and there are pretty stringent rules about what they can and cannot prescribe to treat each illness.

If you are interested in trying more experimental treatments, you'll probably be better off getting in contact with a specialist team at one of the major urban hospitals, as they tend to have funding and permission to prescribe things that ordinary gastros can't.

As far as the Imuran goes, I know it sounds scary, but please remember that this is a CALCULATED risk. The doctors will be monitoring you throughout your treatment to see how your body is responding to treatment, and this means there's a good chance that, if you *do* develop problems because of the Imuran, you'll be taken off the med before it causes big problems for you.

We do have a few people here who have developed more serious reactions to the Imuran, but the majority have been treated with few problems... and those who had a reaction often had it detected through blood tests and were taken off the drugs before they felt / saw any physical symptoms.

I hope this helps.

Ivy.
Posted 5/5/2010 6:06 AM (GMT 0)
Charlee, I’m currently living in Brisbane, have been here about 5 years – but I grew up on the mid-north coast of NSW (it’s where I call ‘home’)

So my parents are north of Sydney – and I am north of them (unfortunately)
:-)
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