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Just had colonoscopy-dr wants to put me on Entocort, I am not so sure- opinions??

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Crohn's Disease
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Posted 9/28/2016 1:16 PM (GMT -5)
Ok, just had my follow up colonoscopy. GI tried in March, but had too much trouble so gave up. This time i was under much heavier sedation, he used a pediatric scope. He finally got through the resection site. The area is inflamed and there is active crohn's. Lots of scar tissue from the old resection. Afterwards he said to continue on Humera and wanted to add 60 days of entocort to help the inflammation.

here is my issue, two less common side effects are ankle/leg swelling and irregular heart beats. well, I already fight ankle swelling and I am just getting over a vist to the ER with an infection in my right calf from the collection of fluid. Also, I have A-Fib, while under control, i did have to have open heart surgery to fix it. I am having no symtoms from my crohn's, which is normal. I rarely have symtom but the desease just does it thing inside. And in fact after almost 15 years I have only been in "remission" for about 6 weeks after my first resection surgery.

so, I really dont want to take this medication. The GI says I will be fine and not to worry as he has plenty of others who take this with out any issues

thoughts?
Posted 9/28/2016 5:35 PM (GMT -5)
I guess one of my concerns is that it seems like the Humira at the dose you are on is not effectively managing the inflammation. It's great you have no symptoms, but if you have a lot of scar tissue and inflammation at your re-section site you are at risk for a bowel obstruction, which is not only ridiculously painful, but potentially life threatening. His idea of Entocort is to get the inflammation down quickly, but I'm wondering if another option would be to either take a higher dose of Humira or take the shots more frequently? One way or the other, you need to do something about this. Yes there are potential risks with the Entocort, but there are almost certain risks with inflammation that is not under control. Just my thoughts...
Posted 9/28/2016 9:09 PM (GMT -5)
I agree with everything @gumby said!
Posted 9/28/2016 9:23 PM (GMT -5)
Entocort isn't going to have the same degree of side effects that prednisone has unless it's at a higher than normal dosage, but I understand your concerns. Maybe a call to your cardiologist would help you decide.
Posted 9/29/2016 8:37 PM (GMT -5)
Thanks for the replies. I did review with my other Drs and they agree do on take the endocort. If symptoms show up, call the GI immediately

As far as another drug or humira more often/higher dosage, it too has side effects that I,pact my heart, so it's a balancing act. Think I moving to a new drug would,be best. I have failed remicade, tried twice, methotrexate , cimza and now now humira is not fully working. I don't know. They suggested entyvio,but at that point I was getting read your or brain sugary to remove a benign tumor that had grown to be huge. I did not want to change anything else. Kaye I need to reconsider it now. But the data I have seen still only shows a 60% effective ra te. I don't know. Got a lot to think about.

And yes, I know how bad a blockage hurts as I have had one that led to my first resection surgery. All i want I see 12 months of feeling good with no changes to anything...sort of like have a normal year...is that even possibLE.?....
Posted 9/29/2016 9:56 PM (GMT -5)
I'm sorry for all you are going through. You are right that none of the options are great. How big of an area is the inflamed section at the resection site? Any possibility of more surgery or a strictureplasty without causing short bowel syndrome? That would at least buy you some time, and meanwhile maybe a new safer drug will come in the future. It is so hard when biologics don't work....the options become quite limited.
Posted 9/30/2016 8:49 AM (GMT -5)
Good morning, Gumby!

its not a large area, just a few inches, right at the resection site. The GI says since it is stayiing in this place, he doesnt feel Humira has failed, just that it cannot fully knock me into remission. Which BTW, is exactly what has happened with all the other drugs. he also said that with the lack of symptoms, including my inflammation markers which indicate no inflammation (usual for me), and i feel good, he does not think we need to change meds. Just try the endocort to knock this back a little. He did not mention surgery or strictoplasty. He did say No to any thoughts of a balloon dilation as he has not had good luck with his patients when they are doing this at old surgery sites.
Posted 9/30/2016 12:00 PM (GMT -5)
It sounds like you have a good GI who is on top of things. I guess as long as you watch it very closely it should be ok.
I am on no meds at all following my re-section because that was the recommendation of the docs, but it always makes me nervous. So far, my colonoscopies look good but I always have significant IBS/D issues, so I think it will be impossible for me without diagnostics to know if I'm in a flare or if the Crohn's is back. It's a tough balancing act, isn't it?
Posted 9/30/2016 2:35 PM (GMT -5)
its more like a daily chore..haha I just dont give in to it. I feel lucky as I dont have so many of the daily symptoms that many of you guys face. So, I feel for you.

When I am having a bad day i look at the photos of myself in the ICU right after open heart surgery and then brain surgery...Things are not that bad..HAH
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