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Looks Like I am headed towards surgery, many questions...


Fri, November 27, 2009 9:33 AM

Hi Everyone,
I am 24 years old, I have had Crohns for 4 years.  This past Monday I was diagnosed with a bowel obstruction in my small intestines, just before they connect to my large intestines.  I have had the symptoms from the Wednesday before.  I currently take 150 mg of Immuran, and a few other meds to treat occasional symptoms.  To help treat the bowel obstruction my doctor prescribed Entocort EC and Apriso, also he wants me to start Remicade.  My pain and abdominal swelling is becoming much worse, to the point that I can lay down to sleep, I have to sleep setting up, if I can sleep at all.  I am becoming quite worried and scared.  Does anyone know what is ahead of me?  I have another appointment with my Doctor on the 11th of December.  Does anyone know how long it would be before I see any effects of the Entocort EC?  I was thinking that I should call my doctor on Wednesday if I continue to feel worse.  Any help or suggestions would be greatly appreciated. 
Jen

FPO emtjen15
Joined Aug 19, 2009

Tue, December 08, 2009 1:00 AM

 Reply posted for emtjen15.

Hi, sorry to hear you're having so much trouble.  I had surgery 12 years ago to remove my terminal ilium and lived symptom free for the next 10 years (great decision in hindsight considering the meds that were available then).  I had my first post surgery flare up 2 years ago and started on Remicade shortly after.  Remicade doesn't work for everyone - but it has worked great for me and I live a normal life now.  I wish that it would have been around when I had my surgery and I might have avoided it.  Of course I might not have too- but you should definitely give it a shot - and if the Remicade doesn't work, then surgery is a whole lot better than suffering through symptoms.

FPO eglennisu
Joined Dec 6, 2009

Sat, December 05, 2009 6:28 PM

 Reply posted for JennyErin.

Been there and know how you feel. Was diagnosed 23 years ago and am now 47. The first thing I will tell you is that after three surgeries I realize that as much as I hate hospitals and getting operated on, there is a time to allow surgery as a good option. That comes when your quality of life is so low that you cannot live productively or enjoyably, or of course when the disease is so bad that a bowel obstruction is so bad or there is so much diseased intestine that doctors will tell you there really is not better course.

I had my third surgery last April and now am back to my regular meds to keep the disease down ... Remicade and Imuran. I haven't had too much intestine taken out because they have used strictureplasty approach to opening blocked/narrowed areas of the bowel. Need B-12 shots, plus the meds I mentioned and smart decisions on diet to keep things pretty good.

Have been able to go back to work full time 6-8 weeks after each surgery. Pretty active most weeks. So I know it's not easy to go into surgery being positive, but it will put better days ahead for you. You can't (and don't want to) rely on steroids. There are good meds to keep you in remission for long periods.

Pray, read the Bible, go to church and live as good as you can realizing that you were created to fill an important role in God's kingdom. One way I look at my CD journey is that I can serve and help others because of my experiences.

Peace, comfort and joy will come ... and through God you will find the strength to make it through the tough times. If you want to email me directly use christistheway1@verizon.net 

FPO das
Joined Nov 14, 2009

Sat, December 05, 2009 1:21 PM

 Reply posted for emtjen15.

I'm writing you because you sound a lot like me. My first surgery is very close for too and I am 25. I'm sorry, I've never had a bowl obstruction and can only imagine your pain, but I am experiencing many symptoms you are. 

I have had Crohn's for 7 years and my terminal ileum (the part where the small and large intestines meet) is diseased beyond repair. I have spent the past couple days in the hospital on bowl rest, which is the only thing that calms the inflammation and pain. Since a horrible flare last year I've been on Humira (an Infiximab like Remicade) which has healed every other inflamed parts of my intestines. 

I'm scared too about surgery, but it was an option before and I wasn't ready then. I'm looking at it differently now.

I would definitely try the Remicade when your body is healthy enough. I took for my first flare 7 years ago and it gave me my life back. It lowers the immune system, but for me, it healed me to the point I actually forgot I had the disease. If it does work for you, you need to remain on it. Back then , Remicade just started being used as a therapy for Crohn's (it was originally made for rheumatoid arthritis) and once my body healed, my doctors didn't think it was necessary to keep me on it. Eventually, I flared up again.

I'm sorry I couldn't comment on the surgery part. I'm seeking answers myself. 

FPO jennyerin
Joined Jul 3, 2008

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