Axial SpA and IBD: A Huge Reminder

I recently had a hell of a week; it was painful and laborious. I've been side-tracked with symptoms of inflammatory bowel disease (IBD). Not only did I spend a weekend in the bathroom, but I was also holed up in my bedroom - knees tucked up to my belly, head throbbing, and feeling exhausted from fighting the severe gut pain - all the while running back and forth between the two rooms.

Not an isolated incident

As the new week begins, I am still having a difficult time with the intestinal pain and swelling that has wrenched me quite a bit. And it’s not an isolated incident; this happens often. It’s a reminder of the high inflammation in my body in relation to my chronic inflammatory disease, spondyloarthritis (SpA) – conditions found to be linked to each other, IBD is "frequently observed in the setting of SpA, an extra-articular manifestation, and in fact, part of the SpA classification criteria."¹

Irritable bowel syndrome (IBS) began when I was a small child of 3 or 4 years old. Eating specific foods would irritate my stomach and intestinal tract to the point I was unable to get off the floor due to the pain. Hunched over and clutching my stomach, I would cry and plead with my parents to make the pain and discomfort stop. Moments like this plagued my teen years as well as continue to be a common occurrence should I not take care of my body with preventative medications and diet.

Now diagnosed with inflammatory bowel disease, I currently have instances when a normal regime of meats, carbs, dairy, fruits, legumes, and veggies set me off into painful days. I am glued to the commode, clutching my belly, crying for relief, with bouts of diarrhea and constipation (mixed IBD), sometimes with mucus and blood, fatigued beyond belief. TMI, right? But honestly, I know that when I get this way, there is no way to avoid this experience other than to wait it out, hoping and wishing for relief, and praying it ends sooner than later.

More than I bargained for

We’ve recently purchased a new home, and lately, we've been eating out more and more due to packing for our new place. Maintaining the current rental and moving, I’ve truly taken on more than I bargained for. Much too tired to cook and stressed about the move, we seem stuck where we must rely heavily on the convenience restaurants offer. I do my best to eat wisely, choosing nutritious food from the menus, but still...a slight whisper reminds me, “Cook a meal at home, you won't regret it."

Though ordering food is convenient, it torments me. Between the large portions, the additives and preservatives, carbs, grease, and fat, it is all unmanageable, dangerous, and taxing for my gut. But with stress from the move and fatigue from inflammatory arthritis, I cave in and order delivery from the "next best" restaurant only 15 minutes away. A habit now, I order not once but find myself doing it on several occasions to ease and manage our schedules.

Out and about

Thursday prior to my bout of IBD, we are out and about to Home Depot for boxes and packing tape. We stopped for a burger and fries at our favorite burger joint in town. Treating myself, I ordered the turtle cup for dessert made with caramel, milk chocolate, and nuts over vanilla ice cream. Delicious! No big deal.

Home again, I search for my preventative medications - mesalamine, hyoscyamine, dicyclomine, and famotidine - to prevent any stomach cantankerousness from the dairy and nuts. Normally I can eat a minor amount of meat, cream, or milk, but for me, these are known triggers, and I must be careful. Nonetheless, I manage well with respect to my intestinal tract accepting and handling this meal.

The next day, after packing more items, and cleaning out the utility closet and herb cupboards, I find I am too tired to prepare a meal. I thought it would be nice to head over to our favorite rib place. I ordered pork ribs, corn, asparagus, and coleslaw. It was quite a tasty meal, and we had a grand time relaxing and visiting with my sister-in-law while listening to a local country band.

The meal went down well, and I was doing fine...until around 4 o’clock in the morning when I was jolted awake by sharp, stabbing pains. This episode persisted for two full days. No amount of medication helped; I had to just wait it out. Fearful and feeling quite guilty, I knew I’d done it now – I’d have a week full of pain and anguish.

Put through the wringer

Two days and nights into this flare, I am still bloated, tender, uncomfortable, and cannot eat much. My body feels as if it’s been put through the wringer. I am unable to put anything down into my belly other than crackers and water, as it may again wreak havoc on my intestinal tract. I try relaxing the spasms and other symptoms a bit by continuing to take the medications from my gastroenterologist. I still have the sharp pains and gas every now and again, but no diarrhea, blood, or constipation, and considerably less painful than at the beginning of the episode.

As the week moves on, Tuesday and Wednesday, I am still having bouts of pain and gut tetchiness. I take in tiny bites of oatmeal, some pretzels, 7-up, and soups, as well as other easily digestible foods. But the acid that accumulates at times is dreadful where I belch and feel nauseous. It is lasting now over a week later. I am hoping to get this to calm down more, but at least I am not plastered to the toilet or stuck on my bed.

Now Friday, a week later, I am more productive. I can now get up and pack a few more boxes, tape up, and store away items needing to be relocated. With slight intestinal crabbiness, my lower back and abdominal area are still crampy and sore, but with less bloat and inflammation. I have eaten a chicken dinner since this all began, and have kept it down well, having no sharp pains or diarrhea. My head has stopped pounding a fair amount and I feel I am on the mend.

Slacking on management

I must note I have been slacking the past month in taking my meds and with my diet as I try to keep up with a hectic schedule of relocating. Unfortunately, I go through flares of inflammatory bowel on a regular basis, sometimes 2-3 times a month, with some episodes managed better than others. IBD can rear its ugly head should I not take my medications daily. This occurrence is a huge reminder to take care of myself, use the preventative medications prescribed, eat well, and reduce the amount of stress in my life – all tools essential to the management of IBD. This is just another reminder not to take my diet and lifestyle for granted.

Are others dealing with inflammatory bowel disease related to their spondyloarthritis? What are some of the symptoms you get? How have you been managing?