Crohns Cramping and naseua
Hi all, reaching out to you guys as you've been so helpful in the past.
I’m in a weird place right now with my Crohns. I currently am on Entivyo which I have not been the happiest with, as I’ve been having issues in the past with nausea and vomiting, but recently a new symptom has been cramping after eating (and cramping in general). Over the weekend I had awful cramps that were near debilitating, could barely sit or stand without being in pain. Sometimes throwing up would relieve this, though not always. I’ve been eating mostly soup or eggs, and have been scared to eat much more.
I saw my doctor who did bloodwork which came back totally normal (slightly anemic but that is always the case with me) with no signs of inflammation. He did a stool sample and my stool did show signs of inflammation but nothing else (no blood).
I’m wondering if others have had anything like this. Did I pickup a norovirus? Could it possibly be a kidney stone (I’ve web-md myself into thinking it might be as the cramping and nausea match, though I’m not having difficulty peeing etc).
My doctor has me on prednisone which is maybe slightly better, though the cramps are still present. I notice them quite a bit while laying down, its been hard to sleep properly. I’ve got an MRI next week, hoping that helps find out what this is or that the prednisone helps kick in.
Anyway just wondering if anyone has any thoughts or tips! Thanks, David
I've never been on Entivyio, but I'm wondering if the cramping is a side effect? What did your doctor say? Did you ask? I see that "pain in the lower extremities" is listed as a possible side effect. I wonder if your cramping would qualify as that? Please keep in touch and let us know how you're doing on prednisone. I, too, just started a round on it. I'm not a fan of prednisone, but it usually turns a flare around pretty quickly. Best wishes!--Traci, UC-IBD Team Member Thank you, I've been on Entyvio for a bit, like over a year, and haven't really noticed this issue before. However, I did get Covid in mid feb and I took paxlovid and one of side effect of that was also cramps. I'm wondering if its related to that. Its been over a month since I was on that so odd for it to just return.
Oh, now that I read this. It could be the Covid? I know of me, about a month after I had Covid my Crohn's flared. And I dealt with the flare for some weeks. Covid stays in our system so it can cause weird symptoms even months after being infected. -Elizabeth (team member)
Maybe you need to switch meds? How long have you been on Entyvio for? I found for me personally, that sometimes the meds would add symptoms, it wasn't necessarily the Crohn's. I also learned that if you aren't happy with a med, let your doctor know and ask to try a different option in a different class of medication. For example, I was on Remicade and I was still flaring. Remicade is a TNF alpha blocker. So I would ask that I would like to try a different med in a different class. Right now I am on Xeljanz which is a JAK Inhibitor. It has been the only drug that has worked for me and offered me symptom relief. Just a thought being that your tests came back relatively normal, it could be the Entyivio? -Elizabeth (team member)
Well, sadly I have lots more to add to this story!
I've been on Entyvio for about a year and a half. I had a scary issue this past week. I was going to get iron at my doctor's (they noted I should come back and get some after my last infusion) and I noticed I was feeling a bit lightheaded and out of breathe coming out of subway.
When I got to doctors office they took my blood and found my hemoglobin level was 6.4 (I guess 7 is the marker for a transfusion). They instructed me to go to the emergency room after which I did.
I received a transfusion and they started me on a prep for an emergency colonoscopy. I spent the night in the ER and had the colonoscopy in the AM along with a second unit of blood as my levels dropped overnight.
Colonoscopy came back totally normal which sounds like that means all the bad stuff happening in small intestine. AFter all of this once I started getting food, my levels were back up and have felt far better ever since.
However, tomorrow I'm meeting my doctor to decide the next course of action (and clearly a change of meds). I had tolerated Remicade well for years, I'm thinking that Humira might be the next step though I just had some scare me with a story that maybe it caused dementia for their brother in law. I'm wondering if there are other options that I should be considering? My doctor hasn't mentioned much more than Entivio/Humira in the past etc.Sorry you went through this. That is so scary. I hope you find the right med for you. That can definitely be a challenging process. It took me about 8 years to find the right one. Ask your doctor to maybe change class of drugs? Remicade, Humira, Entyvio are all Biologics. I tried those all. I was finally switched to a different class called JAK Inhibitor. That was when I finally found relief. There are two JAK Inhibitors that I know of, Xeljanz and Rinvoq. Xeljanz was what worked for me. It's a pill. Also, a new biologic has just come out called Skyrizi. Apparently, it works different than all the other biologics so maybe that is something to look into too. I hope this helps some. -Elizabeth (team member)
