Crohn's Disease Forum » Your Story » My first post- My Crohn's story

07-09-2014, 10:52 AM   #1
KGurley's Avatar
Join Date: Jul 2014
Location: St. Louis, Missouri
My first post- My Crohn's story

Hi. My name is Katie. Ive had Crohns since I was 15. I am 23 now.
When I was 16 I had a blockage and had to have surgery to remove 18 inches of my intestines and half my colon.
After the surgery, the Crohns was still pretty bad so I was put on Remicade. After about a year on that, I had an allergic reaction and was taken off remicade. I was put on many other medications that never really worked for me because along with the crohns, I also have Sacroilitis - severe joint pain. Medications usually only helped one or the other but not both.
A few years ago I was put on Humira. I love the humira because it helps the crohns and the joint pain and I dont have to take a million different pills. Just one shot every 2 weeks. I am having some horrible hair loss, which I think is connected to the humira, but Ill get to that another day!

My mom also has Crohns too and my Grandma has UC. Im afraid when I have kids, they will have Crohns too, and Im not looking forward to that!

Since Im new here, Im not sure what else to say. Im sure Im missing a lot to my story but I dont feel like typing anymore LOL.

Have a good day!
07-09-2014, 11:02 AM   #2
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

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Hello Katie and welcome to the forum! Im glad you've found us .

It sounds like you've had quite a ride, I'm really happy to see that you've found something that is working for you now .

You seem to have a good attitude and it looks like you've managed to stay positive through it all which is commendable.

If you think of anything that you want to ask us just let us know and we'll do our best to point you in the right direction. If you just want to vent or anything then that's fine too and you are always welcome to inbox me if you want a chat.

Having crohns through your family does increase the risk of any children you have developing crohns, but it's important to remember that it is not a garuntee, so don't loose hope. When that time comes we have a section for trying to conceive that you might find helpful.

coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
07-12-2014, 08:38 PM   #3
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi Katie and welcome.

Thank you for sharing your story. I'm glad humira is working for you.

Best wishes.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

07-13-2014, 03:32 AM   #4
Senior Member
Hi Katie

Hair loss seems to be a constant feature of the stronger anti inflammatory drugs. I am on Imuran and my hair is very thin but worth it to keep the illness under control. I sometimes wear clip in extensions to bulk it out.

Welcome to the forum.
07-13-2014, 03:36 AM   #5
Join Date: Mar 2014
Location: Springfield, Oregon

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It's a hallmark of antimetabolites, especially methotrexate. Due to the fact they assault primarily quickly dividing cells, lymphocytes, blood, and most importantly for our purposes, hair follicles. It's not common with TNF-a inhibitors.
07-13-2014, 06:33 AM   #6
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dave13's Avatar
Join Date: Dec 2013
Location: Maine

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Welcome KGurley

I'm happy the Humira is working for you and you can forgo the 'million different pills'.

Who knows? Maybe when you have kids they will grow up in a generation where a cure for CD is found and you won't have to worry.If anything is possible,why not that,right?

Keep up the positive attitude!!!
"It does not do to dwell on dreams and forget to live."

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