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The 2 step approach is generally indicated over the 3 except In patients that are acutely ill (anemia, weight loss), have a high body mass index (BMI), are on high doses of steroids (Prednisone), taking immuno-modulators (Imuran, 6MP) and/or biologic agents (Remicade, Humira, Cimzia, Sumponi), or who require surgery to be performed emergently. In such cases it may be safer to treat the colorectal disease in three stages. The reason should be obvious, it's always ideal to have 2 surgeries instead of 3 because things can go wrong whenever surgery happens.

I was considered a borderline decision as between 2 and 3 steps due to being on a high dosage of prednisone and having a very advanced disease. However my weight was good, so I decided on 2 step based on the latter theory. When my colon was removed, my surgeon reported it dissolved in his hands due to the advancement of the disease. However the ileum, at that time, had no disease and there was no problems creating the J pouch and I had takedown 3 months later as is normal. The situation in the ileum has since changed, but is now controlled with Remicade.

Last edited by CTBarrister
@Winterberry posted:

Two step for me. Takedown was 12 weeks later due to my stoma retracting under the skin line, causing excoriated skin. Tests showed pouch was healthy and ready, so surgeon said the only thing to relieve your stoma skin is takedown, so let's go.

Oh my goodness! I never heard of that! I am super glad you are okay! I see I am not the only one that had problems with a bag

@CTBarrister posted:

The 2 step approach is generally indicated over the 3 except In patients that are acutely ill (anemia, weight loss), have a high body mass index (BMI), are on high doses of steroids (Prednisone), taking immuno-modulators (Imuran, 6MP) and/or biologic agents (Remicade, Humira, Cimzia, Sumponi), or who require surgery to be performed emergently. In such cases it may be safer to treat the colorectal disease in three stages. The reason should be obvious, it's always ideal to have 2 surgeries instead of 3 because things can go wrong whenever surgery happens.

I was considered a borderline decision as between 2 and 3 steps due to being on a high dosage of prednisone and having a very advanced disease. However my weight was good, so I decided on 2 step based on the latter theory. When my colon was removed, my surgeon reported it dissolved in his hands due to the advancement of the disease. However the ileum, at that time, had no disease and there was no problems creating the J pouch and I had takedown 3 months later as is normal. The situation in the ileum has since changed, but is now controlled with Remicade.

Are you on Remicade now because of Crohns disease?

Are you on Remicade now because of Crohns disease?

Yes, although the actual diagnosis is irrelevant- it was inflammation in both my J Pouch  and the ileum above the J pouch which developed 15 years after takedown.  It's well controlled with Remicade, although slightly less well controlled in the neoterminal ileum than in the J Pouch.

Last edited by CTBarrister

Sounds like Crohns. I am sorry that happened but I am glad you are doing well

What it sounds like and what label you choose to describe it is completely irrelevant in my opinion - my diagnosis has wavered between "pouchitis", "Crohn's" and "indeterminate." Prometheus and MRI/CT Enterography diagnostic tests were inconclusive on diagnosis and as far as I am aware medical science has ceased worrying about diagnostic labels once you have a J Pouch and inflammation arises.  It is inflammation and you can label it whatever you want.  You have to treat it, the treatments are all the same and either it responds to treatment or not.  Mine does.  So what you call it really, really does not matter.  What does matter, if inflammation arises in the J Pouch, is how to treat it effectively so that you have a good quality of life.  I have done it for over 25 years.

Last edited by CTBarrister
@Scott F posted:

I did have a post-op ileus for about 10 days, and that was pretty unpleasant.

I did as well, mine lasted 5 days, ended with the dreaded NG tube.  I had it in for 24 hours and once the ileus resolved (which I knew from my bag filling up) I pulled out the NG Tube on my own.  The nurses were not pleased with me but the horse had left the barn, and when the horse has left the barn, there is not much you can do except yell and swear.

Last edited by CTBarrister
@CTBarrister posted:

I did as well, mine lasted 5 days, ended with the dreaded NG tube.  I had it in for 24 hours and once the ileus resolved (which I knew from my bag filling up) I pulled out the NG Tube on my own.  The nurses were not pleased with me but the horse had left the barn, and when the horse has left the barn, there is not much you can do except yell and swear.

Lol. I love your sense of humor. I had a NG Tube too because of the multiple blockages with my baggy

@CTBarrister posted:

What it sounds like and what label you choose to describe it is completely irrelevant in my opinion - my diagnosis has wavered between "pouchitis", "Crohn's" and "indeterminate." Prometheus and MRI/CT Enterography diagnostic tests were inconclusive on diagnosis and as far as I am aware medical science has ceased worrying about diagnostic labels once you have a J Pouch and inflammation arises.  It is inflammation and you can label it whatever you want.  You have to treat it, the treatments are all the same and either it responds to treatment or not.  Mine does.  So what you call it really, really does not matter.  What does matter, if inflammation arises in the J Pouch, is how to treat it effectively so that you have a good quality of life.  I have done it for over 25 years.

Overall, I am just happy you are okay I know Remicade takes 4 hours at the hospital about every 4-8 weeks for some patients, but hey it works I see

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