Anyone diagnosed with Crohn's Disease?

I have been diagnosed with Crohn's disease for about a year now. My Dr. now wants me to have surgery to remove part of the intestine since my meds. are not helping much. I also tried Remicaid and Humira and nope it has not help much either. Has anyone had this surgery and are there any complications?

First, make sure you have exhausted the non-surgical options. I assume you have been through the basics: steroids, 5-ASAs, Imuran/6-MP, metronidazole (Flagyl), methotrexate. If not, there are still some things to try.

Before undergoing surgery, you might want to try a dietary intervention. Not some unproven whacko diet, but a diet to starve the bacteria that are at the root of the inflammation. This would have to be done under your doctor's supervision, with the help of a registered dietitian. Basically, you would try Vivonex, an elemental diet consisting only of amino acids, for at least 2 weeks. Nothing else allowed except water. The dietitian can help calculate your energy requirements and the amount you would need. Be advised that the stuff is not cheap, and insurance won't cover it because it is "food". [The alternative is intravenous feeding for a month, but this is a fairly risky procedure with side effects that could include liver damage and sepsis. I would avoid this if possible, but ask your doctor if it might be appropriate in your specific situation.]

After coming off the elemental diet (or IV feeding with complete bowel rest), resume a diet without simple sugars and starches. You should be able to tolerate whole grains like whole wheat bread - if you are not actively flaring and do not have an obstruction. Try something sort of Atkins, but lower in saturated fat. Focus on meats/fish and vegetables. The objective is to minimize readily fermentable carbohydrates, thus restricting bacterial growth rates and minimizing gas, pain, cramps, and diarrhea. And hopefully inflammation.

If you have been through all the medication and diet options and nothing works, try the surgery - but only as a last resort. It may be the case that your intestine is now scarred and you are facing an obstruction (or recurrent pseudo-obstructions). Or, you may be losing weight to severely, otherwise endangering your life. If this is the situation, then you need to have the surgery.

Work hard to find the best surgeon, someone who is very experienced with Crohn disease. You want a surgeon who will be very minimalistic, taking no more than absolutely essential to prevent a major infection or obstruction. For example, if you just have a few inches of scarring, only take that much. Don't let him/her take intestine just because it is diseased. The less removed, the fewer complications you will have down the road. And avoid the end-to-end anastomosis, which can exacerbate diarrhea. Instead, reattach the proximal segment to the distal segment at a 90-degree angle. This sort of creates an artificial cecum that will help slow down transit and give you a better chance to digest and absorb your food.

Good luck, and please let us know how you are doing!

i have had crohns for 5 yrs and luckily havent had to have any surgeries. i am on remicade now and it has helped somewhat...
i would try to stay away from the surgery as long as possible.
ive done alot of reading and the chance of recurrence is high especially after 5-7 yrs. you have a higher risk of a blockage or a serious infection. i know where you are coming from... there have been times that i have begged my dr to take out my intestines, but he keeps insisting i wait it out for as long as possible

I cant say that I have had this, but I do know someone who has, she has a site that deals with Chrons that may be of help:
http://chronsdiseaselivingwith.blogspot....

All the best with you operation

i have had crohn's for 6 years now and i have not had the surgery for it yet but my own dr told me he wouldnt recommend doing it. he said you have a higher chance of it coming back to another spot and higher risk of infections. he put me on some medicine but it was making me really sick so i stopped taking them and now everytime i start to have a spell of it i take a pain pill and phenagran and it stops it so i would reconsider the surgery.

I had the surgery back in 2003 and have to say that although you should do everything you can to keep from having the surgery, I felt MUCH better afterward. I was heavily on pain meds (which isn't like me) and after surgery, I went home with 1 prescript of pain meds and that's all I've had since. (Humira is working for me now too.)

The surgery itself isn't fun - you have to have an NG tube to keep anything from entering your intestines and with any major surgery, you are going to be off your feet for a while - I was in for 2 weeks. For some reason I didn't think about not being able to sit up or anything for a while after surgery because it's a rather large incision and since your muscles are cut - there's not much you can do for a while. But soon afterwards, it was difficult to keep me from cleaning and working around the house (taking care of my kids too) because I felt SO much better!

I had no complications. They had to remove much more than they originally thought and I'm taking Immodium on a daily basis - but before, I was told I would probably never work again and now here I am teaching 16 dance classes a week and raising 3 kids alone.

Just make sure you have someone there with you - you aren't a superhero and will have to have some help getting around for a little while. But considering the pain you are probably in now, I'd say that you will feel much better soon after surgery. The smaller amount of incision pain is much less to worry about than the constant stomach pain.

And for extra help and advice, go to www.healingwell.com and visit the forums/community section. There are a ton of people there with Crohn's who can give you their advice and opinions. It's a great way to talk with those who have CD and you can feel free to discuss anything about the disease.

Good luck!