Hello all,
So I just had my 2nd calprotectin test in 6 weeks and it went up, even after being in Stelara. I am having lots of bloating and pain issues. Is this normally a sign that the Stelara is not working as well as it should? I’m scheduled for another colonoscopy in 3 weeks. I got back injections and it took away my SI joint pain instantly. I have some ruptured disc so if I still too much the back pain still remains. I just need the gas issues to clear. I’m currently working in a big wide open issue and I make so many trips to the rr and I still seem to have leaky gas issues (maybe IBS along with IBD). Starting to fell very down.
I'm sorry that you're having issues. How long have you been on Stelara, and how often are you injecting? You might have to go to every month, but you also might need more time to reach peak effectiveness. As for your calprotectin test, what did it come back at? If you're in the 400-600 range, it might mean that you're having inflammation issues, and you might want to opt for an MRE or other diagnostics. Keep us posted, hope you're feeling better soon.
Thanks for responding. I’ve been on Stelara for over a year with a break in treatment last year (got Covid 3 weeks after starting it so I stayed off of it for a few months). My test at the time was almost 400. After starting Stelara it went down to 30. Then it started creeping back up. First to 50 and now 78, so it’s borderline. I get Stelara every 8 weeks. I’m reluctant to get it sooner than that but perhaps that is what’s needed. Since it’s borderline my doctor may be ok with that number, but that won’t address my symptoms. I just don’t know what other meds are available because I prefer no steroids.
Good luck with your scope in 3 weeks, that should tell you & the dr if your medication is working or not. It's hard to say with the calprotectin test because we've seen people with the test being in the hundreds & not have symptoms. It's just a marker that shows inflammation.
Quick question, have you tried any of the OTC medications used for gas & bloating. GasX makes a good one, it contains Simethicone which helps with gas. It's worth trying for sure, just make sure whatever brand you try has Simethicone in it.
Susie
Moderator in Chronic Pain & Psoriasis Forums
Quick question, have you tried any of the OTC medications used for gas & bloating. GasX makes a good one, it contains Simethicone which helps with gas. It's worth trying for sure, just make sure whatever brand you try has Simethicone in it.
Susie
Moderator in Chronic Pain & Psoriasis Forums
Thanks again for responding. I have tried all of the OTC meds and none seem to help me. Do you or anyone know of a good medicine for anxiety as it relates to the gut? I am starting to feel that it’s the IBS instead of the IBD (I have both) causing the gas issue. I do have pain back there for some reason. It hurts if I stand too long or even sit too long. The scope should let her see where I am like you said. It’s so nerve wrecking being on the job with a gas issue. I’m so super down about this aspect. Talk about embarrassing….understatement!
I'm wondering if your anxiety is the root cause of your digestive issues, particularly with having gas and so on. Whether someone has IBS or IBD, or is completely normal, stress and anxiety can wreak havoc on the digestive system. Stomach upsets, gas etc. are extremely common when we're stressed. Hopefully you can find something to calm things down.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.
My daughter was diagnosed Feb. 19/07, (13 yrs. old at time of diagnosis), with Crohn's of the Terminal Illium. Has used Prednisone and Pentasa. Started Imuran (02/09), had an abdominal abscess (12/08). 2cm of Stricture.
Started Remicade in Feb. 2014, along with 100mgs. of Imuran.
I’m praying that it’s an easy fix. I just have not been able to find any medicine that can calm my nerves and not knock me out or make me feel down or out of it. It’s too hard to function on the job like that. If anyone has tried anything recommended for the gut/brain issues please let me know. I know that I do get worked up in very stressful situations and being on a new job fits that description. Thanks!