New member - please come in and say hi

chops

chops

Joined
Jul 2, 2010
Messages
17
Hi everyone,

Just wanted to say hi first of all and to know that I'm not the only one out here with this horrible disease?!?!?
 
G'Day chops and :welcome:

I'm so sorry that your introductory post has been missed. I think something went wrong with the system at the beginning of the month as a number of posts have been unanswered which is not the norm for the guys here.

Guess what, you're not the only out there with Crohn's!!!!!

Would you like to give us heads up on how you are going? When were you diagnosed and what treatment, if any, are you on or have had? If I'm being too nosey then just ignore me. :ybiggrin:

Anyway I hope you are still around or find us again. Would love to hear from you again and get to know you better. We need more Aussies here!!!!

Take care,
Dusty
 
Hey Chops

Welcome to the forum. I'm sure you will find some like minded people here and lots of helpful information. How is Adelaide? I went there a few times last year. I so enjoyed the market, mind you the 50'C temperature was a bit much I thought 45'C was bad driving around in an open top jeep, but the 50 - too much. You live in a beautiful part of the world with excellent wine too :cheerss:. So welcome aboard
 
Hi Chops, welcome!! I'm really beginning to wonder about these seemingly lost threads that are popping up of a sudden. Sorry we missed you and hope you come back and give more details about your story. Good luck!!
 
Thank you so much everyone for a great welcome!!!! I was kind of thinking there was no-one really out there at first because I had no responses so didn't really check in.......

Proud to represent the Aussies Kat and no, you're not being nosey! I was first diagnosed with Crohn's at the age of 22 and went into remission when I was 26 when I had my daughter Charlee. I was originally on Salazopyrin and prednisolone but could not tolerate them. I stayed completely symptom and drug free until September last year when I was involved in a bad car accident. I was t-boned at high speed and I believe the stress of my injuries and the event etc. flared up my Crohn's (of course the insurance company doesn't agree with this though) :). Since the accident, I had a severe stricture appear in my small intestine (along with other complications) - it was so bad that I couldn't even pass the bowel prep for a colonoscopy (I honestly thought I was going to die at this stage). Had to go on an all liquid diet until I could wean off the steroids. Finally went in for a bowel resection on April 1st 2010 where 40cm of my bowel was taken. I missed spending Easter with my 4 year old little girl who was too scared to visit her mum in hospital. I have been through a REALLY tough time with this disease lately as I had alot of post op complications and was admitted a further 5 times after the resection. My meds are not agreeing with me and I keep on having them changed all the time. I have been on the normal - prednisolone, azathioprine, metronidazole, and now 6MP which I have just started but has already given me an ulcer in my throat, bald spots, sores on my arms and I am just soooo tired. Sorry to dump all my crap on everyone, but I honestly forgot how horrible and life controlling this disease can be. I feel like I just want my life back how it used to be before the car accident.

Thanks again for everyone's welcome and I am definitely here to stay :)
 
Hi Chops..welcome from one Aussie to another!! I'm sorry you are having such a bad time with it all at the moment. I hope that you start to feel better soon and the medication helps you out rather than giving you more things to worry about.

This is a great place to get information and there are a lot of wonderful caring people here too!

Take care
 
Hey chops,

So happy to see you made it back here. YAY!

I'm so sorry to hear all that you're going through. Do you think the 6-MP is having effect on your crohn's at all?
 
To be honest I'm not sure.... I was having really bad cramps whilst I had the break between azathioprine and 6mp and once I started the 6mp the cramping stopped. Now that I have halfed the dose, my cramps have returned (and even some blood today which has freaked me out) but I don't want to take the 100mg again because of all the other side affects (sores, losing hair, fatigue, ulcer in my throat etc). I keep thinking "which is the lesser of two evils" and at the moment I am just enjoying a bit of the crappy side of both the meds and the disease!!!!
 
Hi Chops, nice to meet you. I see you have had some great support from our community. Everyone is supportive and it is always great to get info and help from those who know how you are feeling physically and emotionally.

You are lucky to be alive after being T-boned, so you are here to fight and help others too! I had two resections too, but 6mp both sister drugs, affected my liver, metronidazole (Flagyl ) really does help me but only be on it short term. You just had surgery not that long ago, and it takes some of us up to a full year for your intestines to work with less of it. I have a hiatus hernia, from Prednisone, and hair loss too but I am also alot older than you and have had it many years. Some people just have more adverse reactions to meds more than others.

As I always say, one day at a time, and if you get bad D, get your doctor to give you Questran, it helped me and now I take nothing for D. :hang: glad you are here!
 
I was first diagnosed with Crohn's at the age of 22 and went into remission when I was 26 when I had my daughter Charlee.
Click to expand...

Did you go into remission after or during your pregnancy. I'm curious because there seem to be many who have no crohn's symptoms during preg.. I think there are researchers looking into this phenomenon.

BTW, I'm glad you came back Chops...yay, more Aussies ooooh boy:):)
 
hey sorry guys about the delay in response especially after you all gave me such a lovely welcome!!!

I went into remission during my pregnancy - it was awesome.....it kinda makes me want to try to get pregnant again just in case it happens again. I am really scared at the moment. I saw my GP today and my bronchitis that I picked up whilst on 6MP has turned acute and he is worried it's going to lead to pneumonia. My GI rang me and says she wants me to come off the 6MP now and start taking humira as of next week (as long as my chest x-ray comes back clear). I am freaking out though because i know absolutely NOTHING about humira besides that you can get tuberculosis. I am supposed to be going to Thailand in 6 weeks and don't know what to do???? Can anyone please give me some advice of what their personal experiences on humira have been like and if they have been able to travel....my doctor has already advised against it and says to stick to westernised countries but I've already paid for airfares and accommodation in full!!!!

Thank you in advance for any help
 
chops said:
...it kinda makes me want to try to get pregnant again just in case it happens again. I am really scared at the moment. I saw my GP today and my bronchitis that I picked up whilst on 6MP has turned acute and he is worried it's going to lead to pneumonia.
Click to expand...

Well I wouldn't recommend preg. as a maintenance program:). Does your doc think there is a connect with 6mp and bronch probs? EJ is on 6mp so I'm curious!! Hope you get better soon!!
 
Thanks DustyKat! Oh my god you weren't kidding about alot of reading to do :eek: At least I will get some answers finally though - it seems no-one will tell me the long term effects of medications vs just going untreated. I keep telling them I want to know all of this stuff because at the end of the day I still feel that I'm only young and maybe the meds are worse than the disease......:ybatty:
 
Hi Dexky

To answer your question, they think the bronchitis etc is all related to the 6MP. I don't know if it's just me but I have had really bad side effects to all the meds I have tried. The 6MP has lowered my immune system badly and I am picking up everything (it's winter at the moment so you can imagine what's going around with everyone having a cold or a flu). I was only on the 6MP for about 4 weeks and have not been off the strong antibiotics since! Hopefully now I wont be taking it anymore, the break will allow me to build my immune system back up - fingers crossed anyway
 
chops said:
At least I will get some answers finally though - it seems no-one will tell me the long term effects of medications vs just going untreated. I keep telling them I want to know all of this stuff because at the end of the day I still feel that I'm only young and maybe the meds are worse than the disease......:ybatty:
Click to expand...

I think most people on here wouldn't advise letting the CD go untreated, whether that be via mainstream treatment or alternative methods. Roo is 18 and has been on meds since her diagnosis at 14. I don't like the idea of her being on them either but I saw what untreated CD, she wasn't diagnosed at that point, did to her and I couldn't bear to see that happen again, she almost lost her life. That's just my personal opinion.

All the best,
Dusty
 
I felt like I was going to die when I went through the whole lead up and the surgery for a small bowel resection. They said it was because I had become so unwell before a major operation that I just wasn't strong enough to recover properly.....is this what happened to your daughter and can you really die from untreated Crohn's????????
 
Well in Roo's case because she was undiagnosed things for her did reach a critical point because her bowel ruptured and was also gangrenous. As a result she had peritonitis and the sepsis was at the point it was touch and go for about 24hrs. So I guess in her case untreated Crohns would have killed her. Bear in mind this is extreme.
 
It really is scary to me. I just feel like I can't get enough information of what's what and which meds are best etc. I feel like I don't always get either a full or straight answer from my GI. Thank god I found this site - the help and honest answers I have already received have been invaluable :ysmile:

Thanks guys
 
I'm a new Member ....




Hello,
My name's Marie, Massa is my knick name!!
I am 46, and sufferd with Crohn's since i was 18 in 1982 ,,, aye its that long ago....

I am going into Hopital on 20th August for my 4th operation, but only my 2nd resection.... i've been not well this time for 18 months, when a stupid registrar decided as i was well enough way back in October 2008 to stop my meds!!! wong decision there i thought , but hey can only give it a go... and hence me being poorly for this length of time .. so hopefully i'll have some free symptems soon...

When people have been saying they were free of symptems during pregnancy i was too.... they did say i might not be able to have children... 2 boys later...i was free of symptems during this time, but as soon as i had the babies my crohn's flared up terrible....

Its nice to know we have this site, and i'm very grateful to be a member... i don't mind if anyone who wants to contact me through my e-mail address it's nice to have a blether with other sufferers....and not just about IBD...

Take care everyone
Love Massa
xxxx
 
Hi massa and :welcome:

So happy you found us! Would you like to start your own thread so it doesn't get lost in this one. I've got loads of relatives in Edinburgh so I will be able to understand you! LOL.

Dallies has a daughter who is having an op the same time as you. I hope yours is successful and you have an uneventful post op period.

Good to have you here and keep us posted!

All the best,
Dusty
 

Similar threads

C
GI says he is 99% sure I have chron’s
Replies
23
Views
2K
Bespectacledberries
B
A
Am I crazy?
Replies
1
Views
709
Opieshuffle13
O
N
I've Got SOMETHING Wrong With me...
Replies
3
Views
1K
notafan
N
S
New and seeking for experiences
Replies
9
Views
2K
Carabop1
C
A
New member - query re urgency
Replies
5
Views
2K
braveheart
braveheart

Latest posts

Back
Top