Have you ever been diagnosed with interstitial cystitis or experienced any type of bladder issues with your AS?
This week I was diagnosed with Interstitial Cystitis. I have heard people in the community mention they have bladder issues, and upon further research learned that sometimes IC is linked to rheumatic conditions and fibromyalgia.
I have AS and have had some really bad flare ups with Interstitial Cystitis….for me, gluten can trigger an IC flare up so if it gets really bad I stop eating gluten for a couple weeks and it gradually improves. Gabapentin really helps for the pain but I also take something called UT Vibrance daily (you can find on Amazon.com). It helps a lot to prevent flare ups and if you are in the middle of one you can take several in a day to help with the pain. Hope this helps! I never experienced IC before starting biologics myself . I’m just starting to have issues and all drs. involved feel the drug is responsible but no alternative really. No advice but always looking lol.
that's really interesting that our doctor's think the same way. I'll be starting back on biologics after I'm finished addressing my vein disease (it's literally one thing after another 🙄) so I guess I'll see what happens with my IC symptoms then. I'll let you know once I get started if something does get triggered. Sending you well wishes and hoping for relief for you and all of your symptoms! -Katie, Team Member
I too have bladder issues, ic with my AS and never before that. Hey Ken!
I'm so sorry you have to deal with IC as well. I swear it is probably one of the most torturous conditions that I live with and not knowing where it came from drives me mad. My current urologist thinks my IC is actually triggered by the biologics I take for AS. It would totally be my luck that the one thing that has given me my life back is the one thing that also triggers this dreadful condition. Sigh. Have you found anything that helps the IC? -Katie, Team MemberThanks for the support and I wish you great success at managing your AS.
Hi Katie,
My heart and thoughts are with you. I understand completely what you might be going through. I strongly believe that there are many, many of us with AS abs related conditions who also have concurrence of IC or bladder issues. So happy you found an online community of people who struggle with IC and AS, that’s exactly what you need for support!
Coincidentally (or not?) I was first diagnosed with IC prior to my AS symptoms ever knocked on my door. Like a full 10 years prior. I was 16 when I first experienced symptoms related to IC, and 19 when I received my actual “true” diagnosis through a pelvic laparoscopic surgery. My whole world was laser focused on IC treatment and surviving it as a teen and young college student, that suddenly when I was through grad school, my symptoms began to subside and my AS symptoms began. I can’t make this stuff up. One was traded for the other. Now I have minimal to no IC symptoms and moderate to severe AS.
Interestingly these last 2 big flares left me with UTI’s and increased bladder urgency and other symptoms. These symptoms are nothing compared to my other AS symptoms, but I made sure to note them in my health log. Anxiously I’ve always wondered if I would be plagued with both and if my IC symptoms would return.
I can imagine you’ve scoured resources online, but I know the IC-network website was super helpful for me during that time. Unfortunately I don’t have resources related to the cooccurrence of IC and AS, but I know the life style treatment recommendations are definitely helpful for managing both AS and IC flares. I did go to a nutritionist for my IC back in the day, and followed a low potassium, anti inflammatory and low starch diet which was helpful to life changing at times. My nutrition and diet are very similar to that currently to manage my AS symptoms as well. No doubt these conditions overlap.
You’re not alone. Sending all my best,
~MelindaMelinda,
Thank you so much for sharing all of that with me! Shortly after posting here, I joined a couple of groups on facebook for IC and found several people there with AS as well!
What you said about how one sort of traded out for the other, that is exactly what has happened to me at this point. I seem ( and I say seem with caution) to be in remission from my AS. I still am very stiff in the mornings, but it is nowhere near the severity that it was a year ago. My IC, on the other hand, causes me a lot of issues daily. I keep getting recurrent UTI's and pelvic pain looms. I take amitriptyline for it and it has helped tremendously!
I so appreciate you taking the time to respond to my post. I hope you continue to see progress in the management of your AS symptoms.
-Katie
