My Crazy Journey

[HayleyO]

Hello my name is Hayley I am 34 years old I have had Crohn's disease for 11 years. I was diagnosed at 23 when I had complications from a rectal abscess. I have had 23 surgeries do to my Crohn's disease, I also don't believe that Crohn's defines me as a person. I have Crohn's it does not have me. The healthiest I've been since having Crohn's is when I was pregnant with my now 7 year old son. I had an Illeostomy when I was 31, that gave me some quality of life back, and allowed me to do things with my son that I could never do before. He is my nurse when I'm sick and my best friend. Having a mom with Crohn's disease has made him a compassionate child and for that I'm thankful. That's my story, hoping to meet some people who are going through the same daily challenges as I am.

 

[Ckoenig]

Wow! 23 surgeries? Yikes!! You can edit your signature and add to that what your meds are now, past meds, and surgeries if you like.
Welcome to the forum I certainly find it helpful and we are opposite I am not new here, but I am new to crohn's. You are not new to crohn's but you are new to here
I was just diagnosed. And I have a lot of questions and uncertainty. I am a mother as well. I have a 12 year old boy and 9 year old twin girls, I am a full time graduate student, and work full time. I do not have time to be tired or sick so I pray all the time that mine "gets/remains" under control. Welcome

 

[mel.k]

Thats alot of surgeries. Like you im new to this site but not new to crohn's. I had my 1st surgery in 1999 at 12yrs old im now almost 28 and have just under gone my 2nd op and had my rectum removed im therefore unable to have the illeostomy reversed. Having the illeostomy when i was 12 saved my life, I like you am just looking to talk to people going through similar experiences.

 

[HayleyO]

Mel.k I was only supposed to have my Illeostomy for 1 year. It's looking like it will never be reversed. I'm fine with that my life it better with it. An Illeostomy at 12 must have been tough. I give you a lot of credit, I struggled with having to do it at 31.

 

[nogutsnoglory]

Wow you are a trooper Hayley. You have a great attitude and are inspiring! I also have an ileostomy and hope it will be reversed.

Are you on any maintenance meds? I imagine you are if you want it reversed.

 

[HayleyO]

I am on Humira once weekly. I have been for about 4 yrs. I have several setons, 5 to be exact. The Humira hasn't closed the fistulas that I have, and without them closing the bag will stay.

 

[nogutsnoglory]

Have you tried Remicade? Why do they keep you on Humira if it's not fully working?

 

[michelle222]

Oh my gosh, 23 surgeries! You really are a trooper and it's wonderful that you remain so positive. Welcome to the forum, I am pretty new myself but so far I have really enjoyed the support and feedback from the people here.

 

[HayleyO]

I was on Remicade first. That did not help me at all. Remicade has helped me very much, as far as inflammation and pain goes. Without Humira I would be worse off.

 

[mel.k]

Hi Hayley I found it made things better for me and was also told it was temp. I wasn't that bothered when i was told that wasn't the case its better than being in constant pain. I feel that its normal in a sense as iv had it so long was definitely easier at a young age as you have little fear and bounce back so quick.

 

[HayleyO]

I had to stop Remicade because during the infusion my blood pressure was going dangerously low. Humira is working well for me, just wish it would close the fistulas.