My story :0)

[tayandky]

Hi everyone,
As of yesterday 5/12 my blood work came back as positive for Crohn's. Here's a little about myself. When I was born a couple days later I was in for surgery having all my large bowel removed due to Necrotizing Enterocoloitis (NEC) within 5 years I had been through alot! I had been on a feeding tube, had an ileostomy, and multiple surgeries. I have had other surgeries cyst and gallbladder. I deal with having an upset stomach all the time. I can't gain weight except for being pregnant. last year I reached 135lbs I was so excited, but then all of a sudden I dropped 25 of it in two months. I would have times of my stomach being very upset and i would be drained. I take Iron, vitamin C, and a multivitamin every day also I take b12 shots 1-3 months depending on when I need them. I have struggled with this due to all my surgeries but just recently after losing all my weight so fast my doctor has been testing me. She just tested me for the IB7 (Prometheus test) Well it came back positive. I got a call today and my dr's office scheduled me a camera study. I had a endoscopy/colonoscopy 2 years ago but nothing showed that. Also a CT scan but that didn't show Crohn's, just an enlarged small intestine. It was hard to see and place where things were due to things inside being all mixed around. I only have 84cm of my small intestine left and have dealt with having multiple bm's a day and not being able to absorb food/vitamins. I'm just wondering if they are jumping the gun with diagnosing me with Crohn's or if this was new and I am developing this? any suggestions would help. Thanks everyone and I have enjoyed reading people's stories.

-Athena

 

[Grumbletum]

Hi Athena
Glad you found the forum I was just gobsmacked reading your story. Heartbreaking but at the same time inspirational. What a time you must have had as a child - and what your parents must have had to go through! But it seems you have real fighting spirit and you've gone on to have family of your own?
It seems that life is dealing you a very unfair blow if you have indeed developed Crohn's at this stage, after everything you've been through. I can't really offer any advice as I'm new to the IBD game, but just wanted to say it's nice to see you here and hope that you get a good solution/outcome to your current problems.
Helen

 

[xJillx]

Hi Athena and welcome! You are one strong individual. I can't believe all that you have been through. And you only have 84cm on small intestine left? No wonder you can't put on weight! And if your small intestine is enlarged and your blood work points to Crohn's, it would add up. Have you discussed treatment options with your doctor? Hopefully, once you start taking medication, you will get relief.

 

[ameslouise]

Hi Athena and welcome! I'm gobsmacked, too and I don't even know what that means!!

A lot of us on here have had the Prometheus test and it has come back "inconclusive." I don't know what the error rate is for false positives, maybe you can look into that. But IMO, if it came back positive, I would go with that DX. then you can look for a good treatment plan with your GI to get things under control and you feeling better.

You have been thru so much already and are obviously a very strong person! You'll get thru this too!

- amy

 

[David]

Goodness Athena, you've certainly been through a lot, haven't you? You poor thing. I'm glad you were able to find your way here, there's a wealth of information that I'm sure will be of use to you. Are they planning to do a colonoscopy on you?

 

[Crohn's Mom]

Hi Athena!

I just want to say Welcome, and WOW! You have been through so much - what a strong person you are - and such an inspiration!

I wish you the best of luck and hope you get the proper treatment soon!:rosette1:

 

[tayandky]

thank you everyone! I am scheduled on May 23rd to do a camera swallow study so I am anxious to do that. I think after that and what they say will determine for sure. I have been trying to go lactose free but cheese is my fav hee. I don't have milk due to that upsetting me. Some foods really trigger my upset stomach. I'm not sure how I gained the 25lbs but I felt great! But to loose it so fast it was very depressing, not fitting into a lot of my clothes. I went back my doctor and told her that its depressing. Everyone makes fun of how I want to gain weight, they say, "people would love to be your weight." I hate when they say that, it's like someone trying to lose weight...same thing. My doctor wanted to put me on a steroid but i think they want to see what the camera study shows. I noticed that I have my ups and downs (flares). Does anyone notice that stress plays a big roll in their crohn's? I believe a few years ago I was stressed and ended up in the ER due to very upset stomach and feeling so crappy. They sent me home saying I had gastritis. I have a huge pain tolerance due to everything I have been through but sometimes the pain is bad when I eat something bad. like my favorite Red Robin. hee. Thank you everyone for your support and I will keep everyone updated as I find out more.