Ankylosing Spondylitis and Digestive Issues

By Steff Di Pardo

2 min read

I’m not able to do much these days.

I've been in symptom hell for the past 7 or so weeks. It started at the end of May with what I thought was the stomach flu. I was having digestive issues and vomiting every single day. It wasn’t fun, but I got through it.

What happened after that

I had about a week after that where I was relatively okay. I thought the “flu” was gone and that I would be able to eat again (yay!). Not so yay. After that week or so, I was right back in it.

This is a bit of a gross article, but it’s what I’ve been going through and I want to share this in case someone is going through something similar.

The next 6 weeks were awful for my body. I was having digestive issues once again - which meant diarrhea multiple times a day, every single day. There was some vomiting here and there, but nothing as bad as the first week of symptoms.

It finally became too much to handle for me. One Friday night I just not feeling well. I felt weak, nauseous, and just generally not well. My mom and I headed to the ER to see if they could help me at all. I felt like I might be dehydrated.

At the ER

I was given fluids and Zofran at the ER and also referred for a colonoscopy to see what was going on. At this point, it had been 4 weeks of this with no end in sight.

A week later I was back in the ER after having 10 diarrhea episodes in 24 hours with 3 vomits. I felt like I was falling apart and once again felt dehydrated.

I needed fluids again, but this ER nurse actually knew about AS (my other one didn't, I had to explain it to her). This nurse understood my worries and urgency to get a colonoscopy (I’m worried that I have Crohn’s, due to it being common with AS). They told me I could take Imodium to help calm my bowels and sent me on my way.

After all of this

I haven’t been back to the ER since my second visit, as I took Imodium once and it did help to calm everything down.

I’m still going to the bathroom regularly, but it’s nothing like it was when I needed immediate attention.

I have my colonoscopy in a few days from when I’m writing this. My Gastroenterologist got me on a cancelation list and I got in within a week! I feel so lucky. I knew I didn’t want to be going through this for another 7 weeks.

My GI understands my concern for everything that’s going on. He sent me for bloodwork to see if I’m celiac, and will tell me more after my scope in a few days.

I’m nervous

I’m extremely nervous to get the results of the colonoscopy. I don’t know if I can handle 3 chronic illnesses (I know I will have to, but it’s going to be hard). I was diagnosed with fibromyalgia earlier this year along with AS, so it feels like I just keep collecting chronic illnesses!

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carrismith40 Member
I've been living with ankylosing spondylitis now for some time and I have had digestive issues I have had four visits with a colonoscopes and each time it felt like he was violating me. none of the laxatives work I get flare-ups every now and then and some of them are real bad but on a whole it's the the daily ones my back burns my neck burns my fingers burn my feet burn and I don't know what to do about it and I tell my doctors. they had me on some pretty powerful stuff but I don't like taking all those drugs I feel like I'm doped up and I want to go to sleep so I don't like that feeling because I have to be up and I have to take care of business so what do you do when th you have to take all this medicines and you don't want to I'm on 14 different types of medications and five different types of diarrhea and bowel movement medication because I can't poop and it's frustrating also A.S. effects my eyes sometimes I can't even see but doctors say its 8n my head sometimes it's like they don't take you seriously when you tell them what's going on or they just throw drugs at you isn't it some other way to deal with drugs I also take cosentex now cosentex helps but it doesn't help a lot I can tell when it's time to take my shot again that's for sure but I don't like again taking all these drugs is there any other way naturally to help with the pain from ankylosing spondylitis
missy001 Member
I have had irritable bowel problems during the the course of my AS. I was taking sulfasalazine and my rheumatologist lowered the dosage. This helped considerably. Has your doctor looked at the possibility of this also being partially caused by your arthritis medications?
Mark777 Member
I've had AS since the age of 17 and now I'm 43. After hearing your plight, I feel very fortunate that the only symptoms I ever receive is this constant but steady burning sensation within my body followed by this mild, but persistent rash on my face and neck. 5 days ago, I ended my 20-day water fast. Surprisingly, the rash on my neck and forehead has totally cleared up. Only the excessive heat within my body and the rash between my nose is all that remains. I don't trust pharmaceutical drugs. I believe in an all-natural diet consisting of 1 meal a day of whole organic fruits and vegetables from the local farmers market. With the exception of Vital Choice Wild Alaskan Sockeye Salmon or Season Brand Sardines in water, I don't eat anything that comes from a can or package in order to avoid salt, sugar, seed oils, heavy metals, BPA, PFAS and microplastics. I only drink filtered Big Berkey water from a 1.6 litre Cheeki stainless steel bottle. There are AS toxic triggers everywhere, from the water we drink to the clothes we wear. I'm right in the middle of changing my entire bedroom environment into 100% organic, non-toxic materials. I'm constantly experimenting with my health. Hopefully next year I will be able to afford getting my backyard bedroom Faraday shielded from Wi-Fi radiation.
1. Doreen H Community Admin
 <inline-mention username="Mark777" user-id="4698419"/> We appreciate you sharing some of the measures you have taken. We recommend others consult with their healthcare professional before making dietary changes or fasting from water for any length of time as it could have a negative impact. All my best, Doreen (Team Member)
2. Mark777 Member
 When I mentioned doing a water fast, I didn't mean that I abstained from drinking water for 20 days. No! I abstained from eating food for 20 days. I drank tons of water. I don't think I could last 1 day without drinking a large cup of water because my throat gets dehydrated very quickly, especially when I'm writing and reading my words back to me during the editing phase. I definitely would not recommend people go this long without food especially if they rely on pharmaceuticals. My last fast lasted for 10 days because back then my body was still very toxic. I had severe dizzy spells which ended the fast on day 10. But because my body is now less toxic, and because my body has long-since grown used to eating nothing but 1 meal per day, this time around, I was able to extend the fast to 20 days without feeling hungry nor worse for wear. I could have easily gone for much longer if it weren't for my loving and caring parents beginning to get more concerned as the days passed by. I had to perform this 20-day experiment to see how the rash and heat within my body would behave. Now that I'm satisfied with the results and that it may not entirely be food allergen-related but an environmental factor that's causing all this internal heat, I have no need to fast for this long ever again. 3 day mini fasts at the beginning or end of each month should suffice.
Beth Member
I forgot to add that as with a low FODMAP diet, very low fibre was the answer for me (it sits in the guts for far too long ), and foods that are easily absorbed and digestible. Red meats are off my list these days as it is very hard to digest. Multiple small meals a day rather than a few large ones. I also struggle with keeping up the water intake, as it takes up space as well, so I include electrolyte or sports drinks daily. I find eating out and with others the biggest challenge, as no-one seems to understand my need for smaller portions. And if the food is delicious, and not low fibre, I bog in anyway to be social, but spend the next few weeks trying to reset my intestines. Holidays are very difficult and I love different foods. And for most meals - following the “good nutrition guidelines” usually means lots of fibre. For me, I try and find good rice and pasta meals, as that’s what my body seems to work best with. And rather than it putting weight on, I take weight off. Go figure! I’m also dairy intolerant - probably the milk protein rather than lactose. I never realised how many other people with AS also had so many distressing gut issues. It appears to be common rather than the exception. It helps to know we are not so alone.
Beth Member
How are you feeling after your colonoscopy? Did the doctors manage to find out what was wrong? I really hope so! Did they consider severe gastroparesis, where you stomach and intestines muscles literally stop moving food along, so you vomit when stomach gets too full (from continuing to drink and eat before it has emptied - which it can’t do), and diahrea from food sitting in the intestines for far too long and liquifying. It can be very hard to diagnose but worth asking if the colonoscopy gave no real answers. Gentle hugs and wishing you a happier digestive system.
Anne P Member
I have had similar digestive issues for a few years now. My GI did rule out Crohn's, but said the acid damage to my esophagus could cause Barrett's. I cycle between so bloated I look pregnant, and "can't leave the restroom" every few days. My GI put me on Levsin for when the diarrhea gets explosive, and pantoprazole to help heal my esophagus. I also have made dietary changes.
CapeJenn Member
I hope you get some answers. I assume you've tried the various dietary changes that can possibly help? I had to try several but that was my answer. I was diagnosed with AS about 4 years ago (after years of misdiagnoses) and developed IBS-like GI issues somewhere along there too. A gastroenterologist suggested fiber to even things out but that made it worse; fibromyalgia treatment and GI treatment often include magnesium products but those exacerbated my symptoms. I just stayed close to a bathroom at all times, gave up working and most aspects of family life and parenting. Somewhat randomly, 1.5 years ago, the GI symptoms took a turn for the worse, including vomiting, and they suddenly seemed tied to specific foods (dairy and peanuts). Eliminating those foods didn't completely solve the issues, and not long after my PCP suggested the low-FODMAP diet. (Turns out the fiber my GI specialist suggested was a high-FODMAP food!) Low FODMAP hasn't completely solved my issues, but it has made it possible to commit myself to being away from a bathroom for more than 10 minutes at a stretch. I now have a very limited diet, but I have a normalish life back. I generally don't like suggesting that my solution would be someone else's solution because everyone's situation is different, but it took many, many different attempts for me to find the dietary adjustments that worked, and my sensitivities actually changed over time. It took a lot of false starts and the often just gave up. I thought I'd share my story in case it encourages you (or someone else) to keep trying. 
1. Doreen H Community Admin
 <inline-mention username="CapeJenn" user-id="4165402"/> Thanks so much for sharing your story and kind words of encouragement. It's great to hear that these dietary adjustments have made a difference for you. Wishing you well, Doreen (Team Member)
kjandersen Member
I have had GI issues as well , mainly Diarrhea . I have bouts of it went to GI Doc. ran all sorts of tests with no definitive answers! Colonoscopy clear other than diverticulosis with no infection. It comes and goes. I take Fiber powder every day and VSL3 Probiotic daily it seems to help. I just take Imodium AD as needed. I let the Dr. know I have AS and they seem to dismiss it as a cause.
Colette Member
Hello Steff~ This is my first time commenting on this site. I just wanted to say I know exactly what you are going through. I also have AS, fibromyalgia and Uveitis. A couple years ago I started having terrible uncontrollable diarrhea(20+ daily)....this was quite different than my usual IBS-C. I lost over 30 pounds from this and my job. Make sure the your gastro takes multiple biopsy of your colon. I was diagnosed with Microscopic Colitis....I have the Collagenous Colitis type. Microscopic Colitis can not been seen by the naked eye on a Colonoscopy like the other inflammatory bowel diseases. I hope you are feeling better soon and get some answers. 
1. Doreen H Community Admin
 Hi <inline-mention username="Colette" user-id="4492063"/>, Welcome to the community! We appreciate you chiming in and sharing your experience. How are you doing since your Microscopic Colitis diagnosis? ~Doreen (Team Member)
Lisa Marie Basile Moderator & Contributor
Steff, so sorry you’re dealing with the deluge of health issues that autoimmunity and inflammation cause. It’s so unfair. I hope you get some answers and relief ASAP.
Lawrence Rick Phillips Moderator & Contributor
Having been suffering with a similar situation I understand your concern. I hope life is more normal these days. I hope your life is netter than when you wrote this.
James Hollens Moderator & Contributor
Hi <inline-mention username="Steff Di Pardo" user-id="2397373"/> , I'm ever so sorry to hear that you have been going through all of this. I hope the colonoscopy goes well and you get some answers and solutions to this all very soon! Sending positive vibes, James (Community Member)
Kgayton Member
I was in a long flare for months until trying LDN - changed my life and worth reading up on it 
1. Nicky-Flikas-aks Moderator & Contributor
 It is so hard being in these flares. I am so glad to hear you are feeling much better and out of it. Nicky (Team Member)