Body Image Can Be Challenging for IC Patients

We don’t often talk about changes in body image and weight as a component of IC. However, the two seem to go as hand-in-hand with the disease and have quite an impact on IC patients. Patients struggle enough to live a normal life going about daily business while managing pain and frequent bathroom trips. But many patients’ daily lives are also affected by how they feel about themselves. And the same condition causing them pain and frequent bathroom trips is also contributing to their weight gain or loss and negatively affecting their body image. That, in turn, contributes to their risk for depression and isolation.

Yet body image and weight fluctuations don’t get a huge amount of attention in a community that is fighting for acceptance and looking for answers to help with its pain. While they have become more back-burner issues, patients feel their burn nonetheless. Add in the financial strain that often accompanies chronic illness, and patients have quite a struggle. Unfortunately grab-and-go food is often less expensive than healthier options and can be the best choice for patients struggling to make ends meet.

Then pile on the challenge of feeling well enough to prepare healthy food and the body image battle wages fiercely. Many IC patients struggle with their body image and weight in conjunction with their medical conditions.

Understanding the Body Image Problem

Dealing with weight gain or loss goes beyond frustration when their clothes no longer fit right. While IC is hurting their bladders, some of its unexpected effects are hurting patients’ self-esteem in dramatic ways. Some report gaining anywhere between 20 and 60 pounds since being diagnosed. And that’s sure to affect their body image.

Trying on clothes, for example, can be torturous for some patients. Instead they opt to shop solely online and avoid mirrors as much as possible. Others have dealt with depression due at least in part to their weight gain. Some have had to change the style of clothes they wear to accommodate for a distended abdomen (a common complaint among IC patients) or to keep the pressure off their pelvis.

The stigma of being overweight and how others perceive them negatively impacts their body image. Family members, friends and/or strangers often comment about someone being overweight, which only adds to the blow. As a result, some patients are isolating themselves even more because of low self-esteem coupled with their bladder pain.

Julie Beyer, a registered dietician who specializes in the IC diet and is an IC patient herself, said these sorts of struggles aren’t uncommon in the IC community while patients are dealing with managing their symptoms and diet. Yet, weight problems are certainly not solely an issue of IC patients.

“In general, we still don’t have a good idea of why America is so overweight,” Beyer said. “Our whole society is dealing with this issue. It’s not unique to IC patients. We need to address the pitfalls that IC patients face in trying to keep their weight under control. People need to be heard.”

It starts with looking at the causes for weight fluctuations in IC patients in particular.

Reason for Weight Gain #1: Medicine

Amitriptyline, an antidepressant that helps some patients get a decent night’s sleep, has been linked to weight gain. In fact, one study offered suggestions for how to treat weight gain in patients on such drugs. This was especially an issue for patients who were overweight to begin with or predisposed to other health issues like obesity, diabetes and hypertension.(1)

Tricyclic antidepressants cause carbohydrate cravings by blocking H1 receptors.(1) Beyer herself experienced that when she tried amitriptyline early on in her IC journey. She thought as a dietician she would be better prepared for it.

“The cravings are really tough,” she said. “People are really surprised. I was surprised. It’s not just sugar; it’s carbohydrates. I gained 10 pounds in seven days. Oh my goodness was I frustrated, and I’ve never been able to take that weight off.”

Beyer’s best tip for managing carb cravings is to just avoid them as much as possible and keep them out of the house. She doesn’t even keep things like graham crackers or saltines in her house, because she will be tempted to snack on them constantly.

Another trick is to try drinking a glass of water when a strong craving or hunger hits before it’s time to eat. Oftentimes that will help signal the brain the stomach is full. If not, try a high-protein snack instead of something carb heavy so it will keep you feeling full for longer.

Reason for Weight Gain #2: Lack of Exercise

Many IC/BPS symptoms can limit physical activity. “When you’ve got a family and you’re trying to just spend your well moments taking care of your family, you’re not running to the gym,” Beyer said. “You’re just trying to keep everybody alive until the next day. There’s a time factor there that people are having to deliberately choose to take care of the crying baby and not get on the treadmill.”

Add in the challenge of working out while in pain or having to take multiple bathroom breaks, and exercise becomes even more difficult. Beyer said early on in her diagnosis, she tried an hour-long exercise class at a local gym. During the workout she had to take three bathroom breaks. Afterward she stopped to talk with the instructor and explain why she had to keep ducking out. The instructor was far from understanding, so Beyer left discouraged and never returned.

Beyer said getting bladder symptoms under better control is the first step before even working to lose weight. First patients need to find treatments and dietary changes that help at least a little bit and then move forward slowly and steadily.

“Make one small change at a time,” she said.

Beyer suggests patients start with walking. The recommended amount for the general population is walking 30 minutes a day, five days a week. Beyer pointed out that those 30 minutes can be broken up into smaller increments throughout the day. She suggested finding walking places or paths that have bathroom access. Malls can work well or even physical therapy gyms. She has mapped a path winding around her neighborhood that stays within 5 minutes of her house and the bathroom.

“Walk where you know that there are bathrooms,” Beyer said. “You don’t have to go to the gym to get your exercise.”

(Don’t miss these tips for exercising with IC.)

Reason for Weight Gain #3: Diet

While the general population thinks of diet affecting weight gain as someone just eating too much or not eating the right foods, diet in the IC population is sort of a whole other beast. When patients are given a list of foods that can make their symptoms worse, they can feel a bit overwhelmed, to say the least.

Figuring out what foods to eat that don’t trigger bladder symptoms or make them worse can be challenging. Combined with the cravings caused by some medications, this can make ICers more prone to indulge in higher calorie foods more often than they would have previously. And then if you had in additional health conditions for some patients, diet gets even trickier. It makes many patients feel like giving up on their goals of eating healthy.

Beyer said there is often more at play mentally than patients even realize. She mentioned changing to a new way of eating shakes things up and can be challenging. If someone is even just at the point of maintaining her weight with what she usually eats and then that all changes, chances are her weight is going to change with it at first as she has to re-learn what foods to eat.

“When you change what you’re eating or what was the equilibrium for you…you have to find a new normal, and sometimes that’s tough,” Beyer said.

Food can become a reward or source of comfort for patients. For example, some patients have struggled with the attitude of feeling like they deserved an extra treat because of all the food they can’t have. The cycle is a vicious one.

Many patients are discouraged by what they are unable to eat, including so many kinds of fruit, but Beyer said eating healthy on the IC diet is quite possible. Most patients can have pears and blueberries and some watermelon. Almost all vegetables are IC friendly and can make up for the missing nutrients from fruits. She suggested focusing on protein and fiber as well.

“Make sure you’re getting good quality protein and spreading it out throughout the day,” Beyer said. “And make sure you’re getting plenty of fiber. The bulk of the food is going to make you feel fuller longer.”

While getting nutrients and fiber through food are best, Beyer said patients can try taking supplements to help. Many mass market multi-vitamins cause flares in IC patients, so she suggested trying a children’s vitamin twice a day instead. The ICN offers a low acid multivitamin, Bladder Smart, that works for many. For fiber, she recommended plain Metamucil or Metamucil tablets. Heather’s Tummy Fiber is a gentle, soluble fiber that many patients with IBS have found helpful.

And making dietary changes sometimes means patients have to try new foods and be willing to work with what they can have instead of fretting over what they can’t. Beyer said she personally has learned to embrace blueberries. She seldom ate them before IC, but now they are her go-to fruit.

Of course, changes in diet mean changes in cooking, which can be a challenge, especially for those patients cooking for their families as well. Even the act of cooking can present challenges when patients are dealing with pain. Beyer has dealt with this issue in her own life cooking for her children and husband. She found ways to make her family their favorite foods while setting aside a portion for herself to make it IC friendly. For example, she made spaghetti with tomato sauce for her family and kept out some plain noodles to add butter and Parmesan cheese to for herself. Or she’d make fried rice for the family and take out her portion before adding in the soy sauce for everyone else.

“Try to find ways to season things differently or separate your portions out,” she said.

She also recommended keeping things as simple as possible, especially at first or during a flare.

“Don’t feel like you need to be making elaborate meals all the time,” Beyer said, mentioning that cooking in batches and freezing food or utilizing the slow cooker or roasting bags can be great for IC patients. “Keep everything as simple as possible. Try not to do mixed dishes, especially at first…You can have endless variety of meals that don’t cost you a lot of time.”

The Other Side of Body Image Struggles: Weight Loss

While many IC patients deal with weight gain due to all the above reasons, other patients deal with weight loss. Beyer said many patients lose weight initially due to the fear of eating too many different foods. However, some patients continue to lose weight and it becomes a health issue with the same sort of insecure feelings as weight gain. Patients feel overwhelmed at figuring out what to eat when dining out or when cooking at home. Sometimes that leads to patients skipping meals all together to avoid the stress.

Dramatic weight loss can contribute to their body image. Patients have reported situations of being accused of having an eating disorder or drug addiction because they lost so much weight.

Beyer has worked with many new IC patients who were scared to eat and lost substantial amounts of weight. Some would cut out so many items that they were down to eating less than 10 foods. Beyer encouraged patients to really look at the IC diet and embrace the foods on the safe list.

“Diet is just one thing [patients] are having to change in their lives,” she said. “Their entire lifestyle has been disrupted.”