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My Crohn's Story

Good Afternoon! I'm new to the site, so I figured I would share my story with you all.

I woke up one morning for school in 1998, at 15 years old, and had stomach cramps so bad, I could not stand up. I had to call my mom and she sent over a friend to take me to the doctor. At the doctor's office, they diagnosed me with appendicitis and scheduled me for emergency surgery. They did a scan and said they could not see my appendix.

While in surgery they found my appendix and it looked fine, so they decided to do exploratory surgery. They could not figure out what was wrong with me, so I was sent to a gatro doctor. They ran a bunch of tests and found it to be Crohn's Disease.

I went years with not taking my medicine or following a strict diet and wound up back in the hospital. During this time, I got a stern lecture from my doctor that I needed to take my meds. I was also introduced to my first NG tube during this visit.

My symptoms seemed to come every few months, so I was able to deal with that for the next few years and throughout college. A few years ago, I was having constant pain and and my doctor recommended injectables. I started with Cimzia, then went to Humira, finally we tried one that was like Remicade, but it's a newer medication and the name escapes me right now.

All of these medications failed me, so I was told surgery would be my best option at this point. I was taking Vicodin every day for the pain and occasional spurts of Prednisone. At this point, I had been in pain nearly every day for almost 3 years.

I had planned to get the surgery done in January 2016, however last June I went into the ER and they told me that we needed to do surgery. I woke up from the surgery and after about 4 days, I got really sick. After a CT scan, they said I needed to have another surgery the next morning. My intestine had burst where they had sewn it back together and I was septic. They had to keep me knocked out and on a breathing tube after the surgery for the next 24 hours.

I woke up in ICU and my girlfriend at the time told me that they weren't sure I would make it through the infection and I was day to day. While in the surgery, they gave me an ileostomy. After a month in the hospital, waiting on my output to slow down, I was released with instructions to continue IV antibiotics for the next two weeks. After this experience, my girlfriend decided she wanted to get married (I tell everyone that I scared her into marriage).

Last month, I had my reversal surgery and everything was successful. I'm currently still experiencing some diarrhea, but I've read that it may take some time for my colon to get back to normal. I'm currently taking my Crohn's meds (Imuran, Allopurinol, and Pentasa) as well as Imodium to slow down my bowels, which seems to be causing a lot of gas; I'm using GasX, but I still get a lot of gas pains at night. I'm hoping time will heal this, but it gets frustrating at times.

I have been through a lot and keep reading forums for advice and figured I would join one to help out with any advice someone may need that may be going through something that I've experienced. I look forward to talking with you all and sorry I went into so much detail and made this a long post.

Jason
 
Don't worry about making it long. We are here for you. I am sorry for all that you have been through. I wish you the best. Keep us updated.
 
Wow that is quite the history! Welcome to the group! I am a newbie too and it is comforting to come here and chat or get advice and support.
 

fuzzy butterfly

Well-known member
Hi and welcome ☺ hopefuly the worst is over now. I had an ileostomy reversal 12mths ago. Diarrhea can be an issue but can be controlled with loperimide or similar. Also have your gi check you for bile salts malaborbstion. This can cause diarrhea, i have bsm..im now on questran powders to help. Best wishes and keep us posted on how you are doing . :hug:
 
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