Introduction-Success Story

Crohn's Disease Forum

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Joined
Oct 25, 2012
Messages
17
Hello all. I have been living with Crohn's since 2007. I was diagnosed when I was 17. At first I was diagnosed as having Ulcerative Colitis but later a pill cam confirmed Crohn's. In the first 3 months after discovering I first had a problem, I dropped 40 pounds. My hair fell out from poor nutrition I suppose. I could barely function, as everyday activities were exhausting. I had horrific nightmares during the night in between constant running to the bathroom. When I wasn't nauseated and would try to eat, after two bites, the nausea would return.

I was put on Remicade and improved slightly. I was on homebound, not being able to complete my senior year of highschool with my friends. Upon returning to school, I found that most of my "friends" had said hurtful things behind my back. I had an eating disorder, I was a freak, etc.

After many hospital ER visits, kidney stones (from dehydration), colonoscopies, blood transfusions, and a trip to the Mayo Clinic in Cleveland it was decided to remove my large intestine. This was heartbreaking to me. Although I wanted to be better, I didn't want to be 18 with a colostomy bag.

One month before my surgery was scheduled to happen, when visiting my doctor he noticed that I had gained weight. My appetite had increased and I was feeling better. Because I seemed to be at least getting a little bit better, he postponed the surgery. I continued to improve.

About 2 years ago I was taken off of Remicade because my body began to reject it. I was put on Humira injections once per week. Humira has been my saving grace. It in combination with an anti-anxiety medication has helped me to live a normal life. I do have an occasional urgency, but no accidents! I am able to do everything I did back before I was diagnosed.

I know that when things are bad, they're bad, and they suck. But I hope that some people reading my story will know that there is hope. You just have to find out what works for you. Having an amazing doctor helps as well.

I am on this site to find out what has worked for others, to meet and confide in people who understand the disease, and hopefully to offer hope and encouragement to those who might need it.
 
Hello and welcome to the forum! Thanks for sharing your story, it is almost identical to my own and its just a comfort to know that someone else knows what its like to walk in our shoes. This disease can be difficult to deal with, but it helps to be part of a forum like this where we can all support each other.
 
Hello! I wish I would have known about a site like this a long time ago. I had felt so alone and although I had family support, I wish I would have had others to talk to. I think that this is such a great idea and can help so many people. I completely agree with you.
 
Hello and welcome to the forum :)

I am so pleased to hear that things improved and you were able to avoid the surgery. When you have the occasional urgency is there anything you can correlate this with - stress or a specific food you have eaten? Also are the docs keeping an eye on your vitamin levels at all?

AB
xx
 
Greetings and welcome :)

Thank you so much for taking the time to share your story, it's greatly appreciated. It's always good to hear of people doing well as I think they tend to go about their daily lives more than hanging out on an internet forum so we sometimes get skewed insights.

I look forward to seeing you around the community.
 
Angrybird-

I do not tolerate spicy foods well. However, I never really did before having Crohn's either. When I have urgency, it's usually random. I haven't been able to pin point anything in particular. When I say urgency though I mean.... I have 5-10 minutes to get to the bathroom. It has been a VERY VERY long time since urgency meant right away.

I do contribute a lot of my success to AMAZING doctors and the anti anxiety medication that I am on. I truly believe that a lot of the problem of people with IBD is the stress of "where's the bathroom", "what if i can't make it", "i won't eat until after i get home"... etc. Taking an anti anxiety med has helped my body to relax and in my opinion heal itself.

Yes... I visit my Gastro every 4 months. When there he does a full blood workup. If I ever feel a little off in between visits I call and he sends me for lab work.
 
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