You're correct, MC does not cause blood in the stool, but hemmorhoids are extremely common with the disease due to all the diarrhea and inflammation. One other very common cause of bleeding is a past history of NSAID usage. Any pathologist can tell you that stomach and intestinal erosion (leading to bleeding) is common/likely for regular or heavy NSAID users.
Tex
Biologics (Entyvio) used as Treatment for CC?
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Gee, aren't GI problems so much fun. Two colonoscopies in 14 months . . . how lucky can a girl be?
No, blood in stool is not one of the symptoms of MC that I've ever read. Your most recent colonoscopy, which should have peeked into the last part of your small intestine (ileum), presumably didn't find any source of bleeding there. So the blood must be coming from higher up in the digestive tract in the small intestine, stomach, esophagus, mouth, or even a bloody nose. I assume that one purpose of the MRE imaging is to locate the source of the blood.
I think you are being prudent in holding off on additional medications until you have a more definitive diagnosis. Plus, if you take the Entyvio at the same time as the Uceris and your symptoms relieve, you won't know whether one medication, the other or both are doing the trick. Stated differently, it makes logical sense to me to first determine whether you are "Uceris refractory" before adding another medication.
Good luck and let us know what happens.
No, blood in stool is not one of the symptoms of MC that I've ever read. Your most recent colonoscopy, which should have peeked into the last part of your small intestine (ileum), presumably didn't find any source of bleeding there. So the blood must be coming from higher up in the digestive tract in the small intestine, stomach, esophagus, mouth, or even a bloody nose. I assume that one purpose of the MRE imaging is to locate the source of the blood.
I think you are being prudent in holding off on additional medications until you have a more definitive diagnosis. Plus, if you take the Entyvio at the same time as the Uceris and your symptoms relieve, you won't know whether one medication, the other or both are doing the trick. Stated differently, it makes logical sense to me to first determine whether you are "Uceris refractory" before adding another medication.
Good luck and let us know what happens.
Hi CMDucks,
I've been on Uceris before. Feel free to drop me a private message if you have any questions about the medication. As others have said, it's less of a systemic steroid than Entocort, so you should theoretically have less side effects than Entocort.
The only tricky thing I remember about Uceris is the tapering process. The medication only comes in 9mg pills. The typical tapering process is 1 day on and 1 day off (you can't break the pills). So when you get to the tapering process you'll want to work with your doctor to figure out the best tapering strategy.
Hope that helps!
Lisa
I've been on Uceris before. Feel free to drop me a private message if you have any questions about the medication. As others have said, it's less of a systemic steroid than Entocort, so you should theoretically have less side effects than Entocort.
The only tricky thing I remember about Uceris is the tapering process. The medication only comes in 9mg pills. The typical tapering process is 1 day on and 1 day off (you can't break the pills). So when you get to the tapering process you'll want to work with your doctor to figure out the best tapering strategy.
Hope that helps!
Lisa
Re: Biologics (Entyvio) used as Treatment for CC?
Hi!
I have been on Entyvio now for 5 weeks and my experience has been great, almost no side effects. It takes a while to work and I need one more dose til my blood levels are high enough for it to fully work but I can already see an improvement on a base level of symptoms I still have even with 9 mg/day budesonide + 4 packets/day cholestyramine. So sick of all these meds so excited to consolidate to just Entyvio if it works cause one 30min IV infusion every 8 weeks is nothing compared to chugging powdery liquid all day plus steroids. It was a struggle to get Anthem to approve Entyvio which hopefully will change the more people try it for MC. Ultimately my doctor and I argued that it is very safe compared to other options and the other options covered by insurance don't have any better evidence. Also note I have had MC since 2017 and it came back after I tapered off bud+chol the first time, and didn't totally go away when I started them again. I've confirmed this with many colonoscopies. I've also tried an elimination diet and various supplements with the help of a naturopath to no avail. My flare has basically never stopped since 2017 (I got giardia on an intense high altitude hike from bad water and the watery D never went away even with antibiotics. I also had a very high stress job for many years before that and took advil often for my knee which I'm sure didn't help, although I stopped with the diagnosis and it didn't resolve symptoms).
Would love to hear from anyone else taking Entyvio for MC! Please don't be scared of the side effects or the IV. It is just like getting blood drawn by a nurse and the nurses are all very nice. You can listen to a podcast during the infusion and it is over in 30min! Easy peazy!
Thanks and hope this is useful,
Antares
I have been on Entyvio now for 5 weeks and my experience has been great, almost no side effects. It takes a while to work and I need one more dose til my blood levels are high enough for it to fully work but I can already see an improvement on a base level of symptoms I still have even with 9 mg/day budesonide + 4 packets/day cholestyramine. So sick of all these meds so excited to consolidate to just Entyvio if it works cause one 30min IV infusion every 8 weeks is nothing compared to chugging powdery liquid all day plus steroids. It was a struggle to get Anthem to approve Entyvio which hopefully will change the more people try it for MC. Ultimately my doctor and I argued that it is very safe compared to other options and the other options covered by insurance don't have any better evidence. Also note I have had MC since 2017 and it came back after I tapered off bud+chol the first time, and didn't totally go away when I started them again. I've confirmed this with many colonoscopies. I've also tried an elimination diet and various supplements with the help of a naturopath to no avail. My flare has basically never stopped since 2017 (I got giardia on an intense high altitude hike from bad water and the watery D never went away even with antibiotics. I also had a very high stress job for many years before that and took advil often for my knee which I'm sure didn't help, although I stopped with the diagnosis and it didn't resolve symptoms).
Would love to hear from anyone else taking Entyvio for MC! Please don't be scared of the side effects or the IV. It is just like getting blood drawn by a nurse and the nurses are all very nice. You can listen to a podcast during the infusion and it is over in 30min! Easy peazy!
Thanks and hope this is useful,
Antares
Re: Biologics (Entyvio) used as Treatment for CC?
Hi antares,
I’m kinda new here, and so I hope you don’t mind me asking how you’re going with the Entyvio infusions to date..? I’m currently on Budesonide which hasn’t been very effective (it’s only slightly reduced symptoms after 7 months on full dose), and mesalamine and cholestyramine were ineffective with lots of side effects that were intolerable. I’m having systemic effects from Budesonide, and still lots of diarrhoea, so my doctor wants to swap me to Entyvio after another colonoscopy in august. I just wondered how you’re going, as a person with MC on Entyvio. My version is lymphocytic colitis, and I’ve done the dietitian/naturopath/supplements/etc thing (edit:I’ve upped magnesium after a discussion on this forum with Tex, in addition to the liquid vitamins I take due to limited food intake), which hasn’t worked to any level of significance.
Thanks for reading my post, I hope you’re well and if you’re comfortable Im looking forward to your reply :)
I’m kinda new here, and so I hope you don’t mind me asking how you’re going with the Entyvio infusions to date..? I’m currently on Budesonide which hasn’t been very effective (it’s only slightly reduced symptoms after 7 months on full dose), and mesalamine and cholestyramine were ineffective with lots of side effects that were intolerable. I’m having systemic effects from Budesonide, and still lots of diarrhoea, so my doctor wants to swap me to Entyvio after another colonoscopy in august. I just wondered how you’re going, as a person with MC on Entyvio. My version is lymphocytic colitis, and I’ve done the dietitian/naturopath/supplements/etc thing (edit:I’ve upped magnesium after a discussion on this forum with Tex, in addition to the liquid vitamins I take due to limited food intake), which hasn’t worked to any level of significance.
Thanks for reading my post, I hope you’re well and if you’re comfortable Im looking forward to your reply :)
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