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Posted 2/25/2015 9:24 PM (GMT 0)
Everyone here is always so helpful, I am hoping someone can help me with some tough decisions. I have had one resection and a stricturplasty on two strictures and have been on Humira for over two years. the Humira has never helped, but my blood work and stool samples always show no inflammation. When I try to do the patency pill it always gets stuck, so can never get the pill camera done. My GI wants Proof the Humira is not working before he will move on to Entyvio. His plan is Humira and pred with Cipro and Flag, then do the camera and fingers crossed! My thoughts are Humia+Pred=no immunity and Cipro + Flag= antibiotic resistance. not a good way to go into emergency resection in my humble opinion. The pred does help, but it is the only thing that brings my symptoms under control. I know in my heart my Crohn's is still active in my small bowel and I am fairly positive I have a partial obstruction. What would you guys do?
Thank you all for being here, you all help me daily!
Posted 2/25/2015 9:53 PM (GMT 0)
I just wanted to say I understand how you feel - it's such a balancing act especially when multiple drugs are used together. You're probably right about the disease activity. We can feel what the doctors can't see. I don't mean just physical pain, but the way the body feels when we're in a flare or going into one. I usually feel like I'm coming down with the flu. Anyway, I hope you can find the right direction for you to go.
Posted 2/25/2015 11:41 PM (GMT 0)
Has he tried a CT scan?
Posted 2/26/2015 12:14 AM (GMT 0)
I had an MRE and a Ct scan before my stricturplasty that didn't show a thing, on my word and the patency pill getting stuck, they did exploratory surgery and found the strictures. Now, my GI is considering another CT, but worried I have had so many with no results, he's kinda at a loss, as am I.
I would just like to be at my best health if I am having another surgery and I really want off Humira because it makes me flu like for three days after every injection, and I'm on it weekly....it just is not working.
I wish I could just prove it!
Posted 2/26/2015 2:57 AM (GMT 0)
How about a Small bowel follow-thru? That will give you the best view of your TI.

If you have more narrowing there, and blockage issues as a result, then the only likely way to deal with that is through surgery? After that, you may be able to continue with Humira with success.
Posted 2/26/2015 4:21 AM (GMT 0)
Actually Tom, I'm pretty sure that the best view of the TI will come from either a colonoscopy, an MR Enterography, or a CT enterography. Those can all give better views than a small bowel follow through.

Inxspoo, the capsule endoscopy is used more for diagnosis than for follow-up. MREs and CTEs are good enough that they can see most inflammation and even moderate ulceration. They should certainly be able to see severe inflammation, narrowing, etc.

I've been in your situation and asked for another capsule endoscopy (had 2 when first getting diagnosed), but my doctor (at a pretty well-regarded IBD clinic) always recommends the MRE instead of repeat capsule endoscopies. If the patency capsule is getting stuck, I'd be VERY hesitant to do a capsule endoscopy.
Posted 2/26/2015 4:23 AM (GMT 0)
Also, instead of adding pred to the Humira, what about adding imuran or 6mp? They can help Humira be more effective and they also reduce your risk of developing antibodies to the Humira.

Do you only have small bowel Crohn's? Have you had any recent colonoscopies?
Posted 2/26/2015 12:46 PM (GMT 0)
I have small bowel disease to the TI. when I had the strictures fixed, it was throughout the small bowel. I cannot take 6mp (pancreatitis) Failed remi, immurine, cimzia, etc. I guess I'm a med wimp. they all seem to make me sick except Pentasa. I just had a colonoscopy, ulcers at TI.
Posted 2/26/2015 1:45 PM (GMT 0)
If the strictures are from scar tissue rather that inflammation, then no meds are going to help and you will need another surgery. It seems like if it is narrowed in your small bowel to the point of partial obstruction, then either the CT or SBFT should be able to visualize it. However, if Prednisone really does help, then I'd guess that that there is some inflammation and not just scar tissue. If Humira is making you feel sick and not seeming to work, I think you should be able to tell the doc that You want to switch therapies. Sorry you are going through all of this....it stinks!
Posted 2/26/2015 4:02 PM (GMT 0)
Thanks for all your support and suggestions. I will talk to my GI about some more testing, he just doesn't have faith in the techs here, since they missed everything on my CT and SBFT and then when they opened me up, there was tons of active disease and inflammation. I'm just one of those odd birds, I guess.
I want to just say enough already with the Humira, but I'm afraid if it's helping, even a little bit, then I've shot myself in the foot.
I find it so difficult to make these decisions, knowing the outcome could be another surgery. I'm in denial, because deep down, I know surgery is coming, not if, but when.
Thanks again, I would be lost without this forum!
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