Many of the symptoms we experience with IBD are invisible – joint pain and fatigue being the major players that spring to my mind! Low levels of iron, B12, and Vitamin D, plus the emotional impact such as anxiety, PTSD and depression are all invisible too, but we feel them, don’t we?

Living with lower abdominal pain

I began experiencing lower, right-sided abdominal pain in 2012, which got progressively worse over time. I had mentioned it frequently during my appointments with my IBD nurse, but it never seemed of interest. One time, when I had pushed the issue, she said: “It may just something you may have to live with.”

I would have found that much more acceptable if it had been investigated and there was nothing to be seen, but it wasn’t, so I continued taking painkillers every day to function and tried to accept that this may be my life now.

Do the doctors and nurses not believe me?

The lack of interest in my reported symptoms left me feeling deflated. I didn’t want a life on painkillers. When the pain had got worse, I had gone on to stronger painkillers, so when I reported that I had also started vomiting, my IBD nurse said that the painkillers were probably the cause. I kept wondering if they weren’t investigating because they did not believe me. Did they think it was all in my head? Was it?

In 2014, after multiple medication failures for pouchitis, I was due to start Infliximab, but I had to have a pouchoscopy to verify active disease before I could start it. That pouchoscopy was particularly traumatic. I usually tolerated them pretty well, but this one had been different. The pain was unreal. I remember giving myself a good bash in the face with the gas and air mouthpiece as I wiped a tear from my eye because it had literally made my eyes water! During that pouchoscopy, a stricture had been identified where my j-pouch joined my small intestine, which was too narrow for the camera to pass through.

This all led to emergency surgery

Further testing led to the discovery of two strictures (narrowing’s in the intestine); one small and one long, right next to each other. A week later I was under the knife as the surgeon felt emergency surgery was necessary.

It turned out that the short one had been an abscess and the long one had been a twist in my intestine. After the surgery, the surgeon had said that he couldn’t understand how I was still walking around in such a state, but the truth was, by that time, I really had started to believe that maybe it was all in my head.

If you believe that something isn’t right, it probably isn’t

It sounds weird to say that it’s lucky that I had chronic pouchitis, but that’s how I feel. How much longer would the pain and vomiting have gone undiagnosed if I hadn’t needed that pouchoscopy to get Infliximab? It’s not something I even want to think about!

So, my story may not be about the most common issues we have with IBD (I have a fair few of those as well), but reaching a point where you actually begin to believe that it may all be in your head is not so uncommon.

The moral of the story? Be your own advocate! You are the only one that really knows what your “normal” feels like, so if you believe that something isn’t right, push for investigations. I will certainly never just leave it ever again!

Crohn’s disease can cause symptoms that go beyond digestive problems, including skin conditions, osteoporosis, and even arthritis.

Gas, bloating, diarrhea, nausea: You’re probably all-too-familiar with these common Crohn’s disease symptoms, especially if they strike regularly. Yet because Crohn’s disease is a systemic or whole-body condition, its symptoms could extend beyond your digestive system.

“Crohn’s disease is a body-wide disease that is caused by excessive inflammation,” says Nirmal Kaur, MD, director of the inflammatory bowel disease center at Henry Ford Health System in Detroit. “Some people with Crohn’s disease only have inflammation in the bowel, but about 30 percent to 40 percent of people have what is called extra-intestinal manifestations, or Crohn’s disease symptoms outside of their gastrointestinal tract.”

In most cases, the treatments for non-digestive symptoms of Crohn’s are the same as the treatment for bowel-related symptoms: primarily medication. These medications may include aminosalicylates (for mild cases), immunosuppressive agents, biologic therapies, and corticosteroids. For most people, they work well for all Crohn’s symptoms. “Most people notice that when their digestive Crohn’s disease symptoms are treated, their non-digestive symptoms get better as well,” Dr. Kaur says.

Understanding Non-Digestive Symptoms of Crohn’s Disease

Here are eight symptoms of Crohn’s disease that show up outside of the digestive tract, why they occur, and how they can best be managed.

Increased arthritis risk. Because of the inflammation associated with the disease, up to 25 percent of people with Crohn’s also develop arthritis, according to the Crohn’s & Colitis Foundation of America. “This arthritis risk is highest in the larger joints, such as the knees, elbows, and wrists, which is called peripheral arthritis,” Kaur says. “But arthritis can show up anywhere in people with Crohn’s disease.” Usually, if the Crohn’s is treated, arthritis improves as well.

Increased osteoporosis risk. “People with Crohn’s disease are at higher risk for osteoporosis than the general population is,” says Mariam Fayek, MD, attending physician in the Center for Women’s Gastrointestinal Health at Women & Infants Hospital of Rhode Island in Providence. “The chronic inflammation of Crohn’s disease leads to increased bone loss, and people with Crohn’s are also more likely to be vitamin-D deficient, both of which contribute to osteoporosis risk.”

This vitamin D deficiency occurs partly because the portion of the bowel that absorbs vitamin D is diseased. Another contributor to an increased osteoporosis risk is steroid use, specifically the drug prednisone, which thins the bones. “Before the 1990s, there weren’t many therapies for Crohn’s disease outside of prednisone, so many people with Crohn’s disease who are older in age received a lot of this drug and now have osteoporosis,” Kaur says. Prednisone is still used as a temporary therapy for moderate to severe Crohn’s when other treatments don’t work, increasing osteoporosis risk in some younger people with the condition as well.

To reduce the risk for osteoporosis:

• Avoid prolonged use of prednisone
• Perform regular weight-bearing exercises
• Avoid smoking
• Minimize alcohol and caffeine
• Eat a healthy, balanced diet

“You should also get your vitamin D levels checked and have regular bone density tests,” Dr. Fayek says.

Skin conditions. Crohn’s disease can cause certain skin conditions, including erythema nodosum, which is characterized by tender red nodules on the legs and shins, and pyoderma gangrenosum, which are large painful ulcers. “These skin conditions are caused by the inflammatory process of Crohn’s disease, and the treatment for them is to treat Crohn’s disease, sometimes along with topical therapy by a dermatologist,” Kaur says. Another possible skin condition is psoriasis. Although psoriasis appears to be a skin disease because of its red patches covered with silvery scales, it’s an inflammatory disease. It’s also linked to arthritis and Crohn’s disease by way of psoriatic arthritis, an inflammatory joint disease that can cause bone and joint damage.

“Some of the medications used to treat Crohn’s disease increase the risk of non-melanomatous skin cancers and melanomas,” Fayek says. For instance, azathioprine and mercaptopurine may increase the risk for basal and squamous cell carcinomas of the skin, she adds, and biologic agents such as the anti-TNF class of drugs may increase the risk for melanomas. Always apply sunscreen, minimize excessive sun exposure, and get yearly skin checks by a dermatologist when on these medications, Fayek says.

“People with Crohn’s disease can become anemic and experience fatigue because of blood loss and inflammation,” Fayek says. “Fatigue can also be associated with depression, which is common in people with chronic conditions such as Crohn’s disease.”

Vitamin D deficiency can also contribute to fatigue, as can the body-wide inflammation that may go along with Crohn’s disease. “Taking vitamin D and iron supplements and effectively treating Crohn’s disease can all help to ease fatigue,” Kaur says.

Canker sores. While mouth sores aren’t a common symptom of Crohn’s disease, Crohn’s inflammation can involve any part of the GI tract, from the mouth to the rectum. “Severe oral involvement may present with aphthous ulcers [canker sores] or pain in the mouth and gums,” Fayek says. These painful mouth sores usually occur during Crohn’s flares and appear on the gums or the underside of the tongue. In addition to regular Crohn’s treatment, oral pain-relief rinses or gels, an oral antibiotic rinse, or corticosteroids may help.

Fever and infection. “Fever can be a symptom of Crohn’s disease because of the low-grade inflammation associated with the disease,” Fayek explains. “A fever is particularly concerning if someone is taking drugs for Crohn’s that suppress the immune system.”

Some people with severe Crohn’s disease can develop abdominal abscesses from the inflammation extending through the wall of the intestine to the abdominal cavity, Fayek explains. “Patients on immunosuppressive medications are particularly at risk for certain fungal infections and reactivation of tuberculosis,” she says. If you have a fever over 100.5 degrees Fahrenheit, she says, you should contact your gastroenterologist right away. If the source of the fever is an infection, you’ll likely be treated with antibiotics.

It’s important for people with Crohn’s who are on immunosuppressive therapy to be up to date on their vaccines, Fayek says. However, live, weakened virus vaccines should not be given to people on immunosuppressive therapy; they can and should receive the following inactivated vaccines:

• A yearly flu vaccine.
• Certain pneumonia vaccines. (Talk to your doctor about which ones should be offered to people starting immunosuppressive therapy.)
• DTaP (diphtheria, tetanus, and pertussis), which should be given as a booster, particularly if it’s been more than 10 years since your last vaccine.

Other inactivated vaccines include: the hepatitis A vaccine, Haemophilus influenzae type B (Hib), meningococcus, and HPV vaccine, Fayek say.

Your doctor can help you determine what kind of vaccination schedule you should follow.

Migraines. Some people with Crohn’s disease or ulcerative colitis can get migraine headaches, which are thought to be rooted in inflammation. Once people take medications for other symptoms of Crohn’s disease, their migraine headaches usually also improve, Kaur says.

Eye infections. “There are two types of eye conditions that can occur in people with Crohn’s disease, and both are emergencies,” Kaur says. The first is episcleritis, which is irritation and inflammation of the episclera, a thin layer of tissue that covers the white part of the eye. “Episcleritis is extremely painful, and it makes the eye very red,” she says. The second is uveitis, which is inflammation of the uvea, the middle layer of the eye. “Uveitis causes distinct pain,” Kaur says. Sudden redness, blurred vision, and light sensitivity are other possible symptoms, according to the American Academy of Ophthalmology. “Both eye conditions are rare, but if you have Crohn’s disease and experience any eye pain or redness, call your doctor or head to the emergency room right away.”

Like the digestive symptoms of Crohn’s disease, these non-digestive symptoms are more likely to crop up during a flare or if your Crohn’s is severe. If you have Crohn’s disease and experience any of these symptoms, talk to your doctor promptly to get the care you need.

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If you have both Crohn’s disease and irritable bowel syndrome (IBS), it can be hard to tell which condition is causing what symptom. Understanding the differences can help you feel better faster.

Having Crohn’s disease — a chronic, inflammatory bowel disease (IBD) that can affect different parts of the digestive tract — doesn’t make you immune to other gastrointestinal ills. In fact, some people with Crohn’s disease also have irritable bowel syndrome (IBS), also called “spastic colon.” Here’s how to tell whether you have both conditions.

IBS Symptoms, Crohn’s Symptoms, or Both?

How can you tell if your diarrhea is a result of IBS or Crohn’s disease? It’s not always easy, says James Marion, MD, director of education and outreach for The Susan and Leonard Feinstein Inflammatory Bowel Disease Clinical Center at Mount Sinai Hospital in New York City. “The symptoms of Crohn’s disease and IBS are notoriously difficult to distinguish,” he says, “and this can be a source of serious confusion among patients and physicians, and can, on occasion, lead to misdiagnosis or misguided treatment.”

Diarrhea, abdominal pain, and urge to evacuate one’s bowels, or abdominal distension can be seen in both conditions, whereas “red flag symptoms such as weight loss, vomiting, fatigue, fever, or bleeding raise concern for Crohn’s disease or ulcerative colitis,” Dr. Marion says.

Sometimes testing can provide a more definitive answer about the cause of gastrointestinal symptoms. “The critical difference in determining the cause of the symptoms, which can be accomplished with a thorough physical exam, blood and stool tests, imaging, and colonoscopy to confirm the presence or absence of inflammation or anatomic stricture seen with Crohn’s disease,” Marion says.

How Treatment for Crohn’s and IBS Differs

Although the symptoms can be similar, treatment for Crohn’s and IBS differ, which is why it’s important to know which condition your symptoms are related to, Marion explains. Treatment for Crohn’s disease depends on the severity of your symptoms. For example, sometimes you may need steroids to control a flare. Or you might need medication that targets the proteins involved in the inflammatory process of Crohn’s.

Treating IBS, however, is largely aimed at easing symptoms. If you have diarrhea, some over-the-counter medications may help. Diet also plays a role in treating and preventing an IBS flare, according to the Crohn’s & Colitis Foundation of America.

Recommendations from the American College of Gastroenterology include consuming soluble fiber (such as psyllium) to relieve IBS symptoms. Probiotics may also ease the bloating and flatulence associated with IBS, the group says.

By contrast, there’s no specific nutrition plan for Crohn’s disease, but eating a healthy, well-balanced diet can help your immune system function better, which is beneficial to Crohn’s. In addition, you may notice that certain foods, known as “triggers,” worsen your symptoms. Avoid these triggers, and see if you feel better.

If you’re experiencing digestive symptoms you didn’t have before, or if your existing symptoms aren’t getting better, make an appointment with your doctor. By understanding, if Crohn’s or IBS is behind your discomfort, you can take the steps you need to treat it.

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