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Finally time to introduce myself

I have been lurking for a while and figured it was time to introduce myself. I must have started this many times and just never finished it, but I am 39 year old female who got her official diagnosis of Crohns disease in July 2012. I went to the emergency room because I could not keep anything down and was in extreme pain actually thinking my appendix was about ready to burst. After a CAT scan, they told me that I had a full blockage and was admitted. As soon as I told the admitting doctor that my father had Crohns, they immediately looked for a protein marker and sure enough, the GI doctor who was on call that night came in and confirmed. I explained to him how about 7 years ago another GI tried to diagnose me with Crohns but decided that it was IBS and sent me on my merry way. So, he pulled my old test and said based upon what he saw, he would have confirmed me back then and was impressed that I had been managing it this long on my own.

So, after an 8 day hospital, three days with an NG tube, a colonoscopy, a small bowel series (which I thought I was going to give birth to a baby elephant because it took the barium 6 hours to pass over one of my narrowed areas) and many sleepless nights (because of the steroids and coming to terms that I had Crohns because in my mind) I had a path forward and a new GI who is amazing.

I came home on steroids, 100 mg Imuran, and Pentasa (1000mg 4 Xs a day) and a prescription for Humira. I took my first loading dose of Humira the first week of August, with only a few side effects (flu like and site reaction) and was excited that this was going to work for me. (My dad went off of Remicade for a year and it didn’t do anything for him, so he went back to what works for him.) 10 days later on the next loading dose…..hello allergic reaction! It started off as a small rash on my hands and arms, so, I call my my primary care doctor, who wanted to put me on steroids and when I told him I was already on them, he told me that was a good thing because I probably would have ended back in the hospital. He told me to give it a few days, use Aveeno for the itch and it should start to go away. By that weekend it was all over my arms, legs, stomach and back, so I called the emergency number for my GI (just so happens he is the on call doctor that night) and am told to load up on Benadryl, up the steroids and come see him first thing Monday morning. He contacts the drug company, they are surprised that the reaction showed up on the second dose and that I could not take it anymore. Since my GI already told me that I was a moderate case….onto Remicade. I have been on that since September, no issues other than feeling like I have the flu for about 12 hours. That was until January when the same rash started to show up towards the end of my treatment, so now we have added to the premedication Solu Medrol and so far so good.

I wish that was the end of my tale, but I have also had my first resection in December, where I had 8 inches of my small bowel (surgeon said it was scared and really "narly" looking) , my terminal ileum and appendix removed. Having the surgery was also a blessing because there was a 2mm carcinoid tumor in my appendix. Everything came back fine with that, thank god.

This forum has helped me out a lot with questions that I have had and it is good to know that I am not alone out there dealing with this.
 
Thinking about you! We have lots in common in terms of medicine, surgery, etc. I am 22 and have had Crohn's for almost 13 years, so I've done almost all meds. Let me know if you have any questions. I just joined the forum too, figured it was finally time to be assertive and realize that connecting with other people experiencing the same thing can help.
 
Thank you mcate! I know seeing my dad dealing with it for the past 20 years, I know there are ups and downs. I have been having pains again for the past 4-5 days and heard his voice in my head telling me not to be him and call the doctor.
 

Jennifer

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Hi cntrygrl504 and welcome to the forum! :D

Will you be contacting your GI first thing come Monday to tell them about the pain you've been having? I had the same stuff and same amount removed during my resection (minus the tumor). Its possible your pain could be scaring from the resection and hopefully not a flare up so soon after surgery. Keep us posted. :)
 
I went and saw my GI last week and the blood work showed that there is inflammation, so I am back on low steroid for a month. I have my next Remicade tomorrow and he said we would talk more on what we need to do….adjust meds, small bowel series etc to see how we can stop this from happening. My dad has been classified as a sever case and I am worried that I am following in his footsteps.
 
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