Hello there, so glad I have found a forum where hopefully I can talk candidly about my condition. At last, today I have my diagnosis, that I do have Crohn's. After two years of multiple colonoscopies , investigations , pain and family upheaval , I can finally have the diagnosis. Really not sure how to feel as this is my life now and things are not pretty. Depression has set in as I wonder how my wife and two small children will cope as I prepare for surgery next week. Hoping to find some comfort and compassion with you good people. Thanks.
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Another new member
- Thread starter Mounty
- Start date
Hi Mounty and welcome! Feel free to share and we'll do our best to support!
scottsma
Well-known member
- Location
- Tynemouth,
Hello Mounty and welcome.You've come to the right place for knowledge,support,understanding and advice,and a good old moan when you feel the need.I hope your surgery goes well next week.I know you will be depressed and confused,and who wouldn't,but try to get through one day at a time.It's difficult with a family of course,so I hope you're getting support when you need it.Best wishes and I hope things improve for you soon.
P.S. My son and his family are based in Perth but have relocated to Kalgoorlie for work.
P.S. My son and his family are based in Perth but have relocated to Kalgoorlie for work.
Hello Mounty and :welcome: praying for a speedy recovery so you can be back with your wife kids.
- Location
- ashburn va
hi monty. Hope your surgery goes well. Take everything day by day.
Thanks everybody for a warm welcome. Surgery is due to the results of the MRI , lots of bad scarring and damage has been revealed. Really hope it gets to the bottom of this crippling pain. Currently on 150mg azathioprine and 90mg steroids. First time on steroids and it's really messing with my head and life....!
Is any body on long term steroids because if that's the case I don't know if I can handle it.
Is any body on long term steroids because if that's the case I don't know if I can handle it.
Mounty - I too am a Chronie newbie. Just diagnosed with severe Crohns March 4th. I'm on 30mg Prednisone. I'm only 2 weeks into using it and will be until I begin infusion or shots in April to knock out my flare.
My GI told me yesterday that I cannot stay on steroids long-term. That's why they go for drugs like Remicade or Humira to combat the inflammation along with drugs such as mesalamine.
The steroids have affected my sleeping, I cannot sleep well on them. They also make me jittery but they do give a boost of energy, knock down the swelling and allows me to stay hungry because I was losing weight too quickly. That has now reversed.
I hope your treatments go well and you get better. We're both in the beginning stages. The disease WILL NOT WIN!
My GI told me yesterday that I cannot stay on steroids long-term. That's why they go for drugs like Remicade or Humira to combat the inflammation along with drugs such as mesalamine.
The steroids have affected my sleeping, I cannot sleep well on them. They also make me jittery but they do give a boost of energy, knock down the swelling and allows me to stay hungry because I was losing weight too quickly. That has now reversed.
I hope your treatments go well and you get better. We're both in the beginning stages. The disease WILL NOT WIN!
Thanks Romey, I have done a whole lot of reading up on the disease although nothing replaces talking to people in the same boat. I think some other drugs may be useful to look at. Remicade has not really been talked about here in Australia, but I will bring it up with my GP. azathioprine seems to be the drug of choice by Doctors when treating Crohns in Australia. I have to wean off the steroids. It's like walking around with a head full of cotton wool. Plus the no sleep is slowly altering my personality.
I'm in a severe flare.
oo: Lots of swelling frankly, my colon looks like hamburger. That said, the maximum dose my gastroenterologist had me on for the steroid was only 40 mg a day which worked. I'm down to 30 mg now.
Personally, I would question why he has you on such a high-volume of steroid. I can't imagine your flair or your condition could be much worse than mine. When I see that 40 mg for a week then going to 30 would suffice for me.
Of course, you need to follow your doctor's orders, however that seems like an awfully high level of steroids to be putting up with.
oo: Lots of swelling frankly, my colon looks like hamburger. That said, the maximum dose my gastroenterologist had me on for the steroid was only 40 mg a day which worked. I'm down to 30 mg now.Personally, I would question why he has you on such a high-volume of steroid. I can't imagine your flair or your condition could be much worse than mine. When I see that 40 mg for a week then going to 30 would suffice for me.
Of course, you need to follow your doctor's orders, however that seems like an awfully high level of steroids to be putting up with.