Do you experience gut issues with your AS or AxSpa?
People with axSpA are more likely to get inflammatory bowel disease (IBD) than those without it. IBD includes ulcerative colitis and Crohn's disease. These conditions can cause digestive tract damage, which could require surgery.
Symptoms of IBD include abdominal pain, persistent diarrhea or constipation, blood in the stool, unexpected weight loss, reduced appetite, and fatigue.
My understanding is that my (relatively mild thankfully), chron's, celiac, and barrets, created the initial inflammation which caused my AS.
Am I wrong?Thanks for sharing! I'm not sure researchers have figured out how digestive illnesses and AxSpa/AS are linked, but these illnesses are very common comorbidities (occurring together) and many people in our community are also dealing with both. Were you diagnosed with digestive conditions before you started experiencing the symptoms of AS? Warmly, Kathy (Team member) Not sure. Both came along in my late 50's. I just don't know.
Chronic diarrhea up to 6 times a day for 15-20 years. Extreme nausea, cramps, pain. Family doctors: "eat more fiber...". Finally saw Gastroenterology 4 years ago, was told emphatically that I did not have EPI, but tested for everything else they could think of, had numerous endoscopies and colonoscopies. Treated for SIBO repeatedly (thousands of dollars per antibiotic prescription). All sorts of gastro issues over the years. Finally, new gastro doctor tested for digestion of fats, discovered I absorbed very, very little of what I ate, so diagnosis is now, of course, EPI. Medication for EPI costs thousands per month, gives you cramps, nausea, and gas. However, chronic diarrhea is down to maybe 2x per day... So really not sure if this is a win, or if the medication is worse than the problem...
It’s understandable that it doesn’t feel like a clean win when the treatment still comes with its own problems. The side effects and cost can make it feel like you’re constantly weighing pros and cons instead of just feeling better. Nonetheless, you made some progress after years of not having a clear diagnosis. How long did it take to see improvement with the diarrhea after starting treatment? -Latoya (Team Member) It actually took several months. Initially, the medication made things much, much worse. I stuck with it, believing the available literature's description of possible side effects, hoping that my system would eventually adapt. I still do not have "normal" bowel movements, but far better than just liquid diarrhea. I can actually travel like a normal person. Before, that meant packing a full change of clothes, cleanup cloths, carrying a portable bidet, and not eating/drinking before or during the trip.
The EPI medication has to be taken for pretty much anything you eat, which means impulsive consumption doesn't work well. I've stuck to my 6 small meals a day diet with 1 snack in the middle of the night -- works out to about 10 fairly large capsules per day... Convenient, they aren't, but not much choice at this point.
Christopher
I have lymphatic colitis. Never knew what the problem was, initially diagnosed as IBS. It was discovered as colitis 10 years ago w/ colonoscopy, my AxSpa not diagnosed until 4 years ago. Surviving with meds & patience.
- thank you for the response. Yes, my rheumatologist definitely thinks the 2 are related. I also tend to get iritis 2-3 times a year. Definitely a hit mess! 🤣 I am so sorry you are going through this. The link between AS and gut issues is still being studied, but it's definetely a real thing (and sometimes made worse by the medications for AS). Here's an article by one of our health leaders who thinks her gut issues came first. Which did you notice first? All the best, Kathy (Team member)
Have had IBS since I was a child. Sometimes it’s stress related, sometimes not. Days of diarrhea, then days of not going. I’ve finally reconciled myself to this.
Thanks for sharing your experience. The connection between AS and gut issues is being studied, and it seems quite likely that there is some sort of link. You might be interested in this article by one of our health leaders who addressed her stomach issues to help her AS symptoms. All the best, Kathy (Team member)
