Sticture in colon

[Cat1653]

Talked to surgeon at Kaiser today and he said to try infusions before I decide on the surgery. I have a pretty good size stricture. What should I expect from Remicade and will I be able to work? Also how do people get referrals to Stanford?

 

[Cat1653]

I have not been on any medications for long periods of time until this year. I have had crohn's disease for about 18 years. I am 53 years old. I am assuming from what I have read that this doesn't get better.

 

[Cat1653]

Thank you. I am still trying to learn how to use this.

 

[vtfamily]

Talked to surgeon at Kaiser today and he said to try infusions before I decide on the surgery. I have a pretty good size stricture. What should I expect from Remicade and will I be able to work? Also how do people get referrals to Stanford?

My son also has stricturing Crohn's. His doc likes to try all medical (medicine) options before surgery. Long story, short...if you have a chronic stricture, it is unlikely to respond to medication alone. Your doc might try a balloon dilation too.

I always understand why his doc wants to try meds first, but when it comes to strictures, I think surgery is a more expedient solution...providing the inflammation is under control.

Last year my son had an ileocecal resection and started Stelara (he has been through everything else, including Remicade and Humira). Since then, no pain, no new strictures, and the Crohn's seems to be under control (for the first time in ten years).

Remicade managed Gus' inflammation for about 18 months, but did not prevent new strictures from forming.

We are Kaiser patients too. Step one: ask for a second opinion referral. They will probably send you to someone in a different hospital region first. See what they have to say. If largely the same as your doc, then request an out of system second opinion referral to Stanford.

My son's case is so difficult, or doc made his own petition to get approval to have a leading GI doc co-consult out of Cedars-Sinai in Los Angeles. It has been a real blessing having both docs on his case!

Best wishes and good luck to you.
Cheryl VT

 

[Cat1653]

Thank you! The surgeon I talked to wanted to remove the whole colon. I have never had surgery before. I will definitely ask for a second opinion.

 

[vtfamily]

Thank you! The surgeon I talked to wanted to remove the whole colon. I have never had surgery before. I will definitely ask for a second opinion.

Wow! The entire colon? I'm sure there is more to the story, but with something that big...and sudden...a second and third opinion are well advised. Try to get second opinions from both GI docs AND surgeons.

Is there a reason not to just remove the stricture and resect? What is the plan for waste elimination? Have you discussed a temporary colectomy to give colon a chance to rest?

Prayers for you.
Cheryl VT

 

[Cat1653]

I have had this stricture for a while. It was seen in a cat scan. I had a knee replacement last year. The first week I was home I got really sick. I had a colonoscopy last year and that is when they found the stricture. They could not get the camera through my colon. The GI doctor says there is inflammation in the lower and upper colon. She sent me to a surgeon. I had a scat scan and the stricture is pretty long. I do not have cramping and I do not get that sick very often. I do have to go to the bathroom within the hour after I eat. I have changed my diet and now steam my vegetables and eat rice. I always thought I had a mild case of Crohn's. The GI doctor says that I have moderate to severe Crohn's disease. I have never taken this disease very seriously until this year. I am just really learning about it.