I'm new and in need of advice, please.

[JamesC]

Hi everyone,

I'm James and I'm 25 and I have still to be diagnosed fully, but its either Crohns or Ulcerative Colitis. My symptoms started in December 06 and I still havent been told exactly what it is. I've had 3 endoscopy/colonoscopys (1 under anaesthetic) and they still cant put a name on it.

Anyway, I've been on Prednisolone for about a year, fluctuating from 40mg to 5mg a day. I've come of it a few times but then had to go straight back on. I was in hospital for a week over new year to have it through intra-venus when my symptoms got really bad.

I'm currently taking Azithioprine 200mg (for the last 7 months) a day and Asacol 400mg(6-a-day). I'd say that over the last 18 months, I’ve probably had 2 months remission but these have been for a few weeks at a time. No real lengthy remission. Nothing seems to be getting things under control.

I've also had 2 peri-anal abscesses in the last 8 months and I currently have a fistula as a result, that is due to be inspected in early September. My last peri-anal abscess took 7 weeks to heal due to infection. I lost about 2 stone in weight in 9 days. It really was quite a horrific time.

I would love some advice from people who have gone through these similar experiences. How can I make my life any better? I haven't worked in over a year due to all of this. My social life isn’t great at the moment either. How is everybody coping, in respects to work, social life etc? I really want to get on with my life!

Thanks in advance,

James

 

[teeny5]

To my knowledge if you have a fistula it has to be Crohn's...those don't occur with Ulcerative Colitis.

 

[DCH11]

Hey James...

My fiance is 21 and has Ulcerative Colitis. I dont know hardly anything about Crohn's but he hasnt had any abscesses so it could possibly be Crohn's or maybe even both. (Not sure if you can have both). He is always on and off the prednisone as well. He starts out taking 40 mg and then once he tapers down to 20mg he starts to bleed again. He is also on the Asacol 400mg and takes 9 pills a day. That really helps him control his bowel movements besides his flare ups.

When my fiance had his colonoscopy they took a biopsy of his intestines and thats how they confirmed his UC.

In order to get him off of the Prednisone, they put him on 6-MP (Mercaptopurine) which i think is like a drug that mainly treats Leukemia, but it also helps my fiance. I have read somewhere that it can also help in draining fistulas so maybe you can ask your doctor about it. Maybe it will help you too instead of staying on the Prednisone just because its long term side effects can be dangerous.

They main thing you can do to live life to the fullest is take one day at the time and get lots of rest. If you are the same my fiance gets tired really easily so he makes sure to get a lot of sleep.

Hope i could help...Keep in touch!! ~Dana

 

[hippie4lyfe]

just out of curiosity because im weaning off pred now, what side effects and symptoms did u get that needed u to goto the hospital?

 

[JamesC]

Thanks for the help.

Basically I was on 40mg of Pred a day and it wasn't doing anything. I think I had built up a resistance to it.