• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Newbie

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Stacey84

Guest
Hi everyone

My name is Stacey, I'm 26. I have had CD since I was 7 although not diagnosed until I was 10 because they couldnt find CD the first time round. Symptoms were severe weight loss, (from a healthy kid to weighing only 2 stone), D, fever. My dad had CD but my parents never thought I had it because my symptoms were different from his. Because I have had it since a young age, my height and weight have been affected. For many years I was giving TPN through a hickman line. When I was 16 I was giving growth hormone, it worked, I grew 5 inches. I have had surgery to remove 9 inches of bowel. Also for a blockage and a fistula. I am currently taking mercaptopurine which I am not sure is working. I had 1 infusion of Infliximab last year which did work, my appetite was so good, but it only lasted about 2 months. I think my crohns has started to flare up again, no appetite, grumpy and so tired. Looks like I will be back on the roids soon enough. Ahh the joys.

Stacey
 

My Butt Hurts

Squeals-a-lot!
Hi Stacey, welcome to the forum!
I wonder if the Infliximab would work again and continue this time if you kept getting it? I have been in remission for a year and 1/2 now, but I get the infusions every 8 weeks.
Glad you found us!
 
Hi Stacey, nice to meet you :)

You've been through so much, no wonder you feel grumpy if feel a flare coming on. Hope the docs can keep it under control. I know someone who has TPN through a Hickman line for having short bowel syndrome and it's a hard thing to deal with.

You'll find the site a great support.

Lyndsey xx
 

Astra

Moderator
Hi stacey
and welcome

Poor little love, so much for someone so young!
Yes, no wonder you're grumpy!
Lots of support here for you, glad you found us
lotsa love
Joan xxx
 
Thanks for the friendly welcomes. :) I am seeing my GI on Tuesday so I will definitely bring up having more infliximab. It did work before so I wouldn't mind having infusions every 8 weeks. Glad to hear its working for you MBH, helps me feel more positive about getting it. I need to try something, losing a lot of weight at the moment. I hate feeling so scrawny.
 
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