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Hi all,

 Reply posted for amandag0823.

Amanda,  

 Reply posted for amandag0823.

Dear Amanda,

I just had surgery to remove about a foot of large intestine on June 16th this year. I have had crohn's for 20 years and even though it was scary to have the surgery, now that I have recovered, I feel great! It was definitely worth it and has changed my life! I no longer have horrible pain when I eat food and am off most of my medicines except Humira and methatrexate.

As most people here are saying, I wish I had done the surgery a long time ago! But now that I have the goal is to keep me symptom free as long as possible. Before the surgery I was going to the bathroom 6 to 10 times a day. Now it is once or twice a day! Such a huge difference. I also had my bowel resection done laproscopically which was great! I had very little pain and healed good from it. So if surgery is an option you should consider everything before doing it. Everyone's body is different in how this disease affects you. I wish you the best!

Sincerely, Kellie

 Reply posted for amandag0823.

I just had the same surgery (laproscopic) on 9/16/10.  I had an infection 2 weeks after the surgery and was hospitalized again for about a week.  But since then I no longer have any pain.  Just a little discomfort from the resection.  I still use the bathroom 8-10 times a day.  I'm not sure when that is supposed to fix itself. 

I was just diagnosed Jan. 2009.   The Cimzia has worked but I started having pain again 06/10.  No flare up but the scar tissue at the ilium was causing a lot of pain.  The doctor finally decided on surgery.  I think I'm having a mediocre recovery.  I don't feel bad but I don't feel great.  But very glad that I had the surgery. 

I feel like I'm still new to Crohn's so this has just been my experience so far with the surgery.  Good luck to you!!!

 Reply posted for amandag0823.

I just had surgery on 10/28/10. It was done laproscopicly (1 incesion) and about 2 feet of the ileum, my apendics and 2 inches of my large intestine was removed. I have suffered for years and this is a true blessing to me. I haven't felt this good for a long time. There is no cure yet, but just the relief I have at this point was worth it. I am also being treated for breast cancer and had to stop all meds related to the Crohn's disease and will not be able to go back on a lot of those meds due to the risk of other cancers, so surgery was my only option because I became so very sick with the Crohn's during, and after chemo. I wish I would have had this done sooner. Recovery hasn't been bad at all because of the way the surgery was done. I was in the hospital 2 days and released a day early. There was pain, don't get me wrong, but compared to the way this surgery was done previously ( big cut...) this isn't bad. My real thrill was about 10 days after surgery, I only had 1 bowel movement, compared to the 8-16 times a day and have continued on that path. I am thrilled with how great I feel and even though there aren't any guarentees how long this will last, I will take what I can get. Life is too short to be as sick as I was and I have too much living to do yet.

 Reply posted for amandag0823.

Hi.

Scarring can occur as a result of surgery but is also caused by the disease. In fact, scarring can become a problem in itself and is a good reason to remove sections of bowel after years of active Crohns.

In my case, surgery gave me 10 disease-free years. I was delighted with this result and I really wish I had had the surgery earlier.

The surgery itself is intense. I was in a lot of pain for the first 2-3 days, had an NG (nasal-gastric) tube for 10 days and I could not eat or drink anything during this time. I was also weak, easily tired, and unable to reach or lift anything for many weeks.

However, weighting a couple of months of discomfort against years without Crohns puts everything in perspective. Although you may not want surgery now, and although it will not cure you, keep an open mind about this treatment.

Best.

 Reply posted for amandag0823.

Hi,  I'm glad your dr. is holding off surgery.  I had the surgery in an emergency situation.  I was good for about 6 years after the surgery and have been in the hospital about 5 times since with blockages.  What happens is that you'll have scar tissue that can cause blockages. My crohn;s also came back right near where it had been.  I've had Crohn's for about 11 years.  This past year I found out about the specific carbohydrate diet and it has really helped me.  good luck and i hope you feel better soon!

 Reply posted for amandag0823.

Hey Amanda, Let me say first that I don't have experience with the surgery.  But while the surgey may eliminate the immediate problem, it unfortunately doesn't "cure" Crohn's.  I know you are pretty early in your diagnosis but this website has some good information on the differences in UC and Crohn's that you might find helpful.

If the surgery ends up being necessary, you'll still need to be working with your doctor to find the right combination to prevent future flare-ups.  When I say combination I mean diet, rest, exercise and meds if you need them. 

It's a lot of information to try and take in so if you aren't in an emergent situation with the surgery, I would suggest doing as much reading and gathering of information that you can.

Hoping for the best for you,

Claire's Mom