Living With IBS: The Truth No One Talks About

IBS can be a debilitating problem to live with. In this post, I discuss the raw truth about living with IBS and what I’ve found to help. 

How to Live With IBS

I don’t totally remember the last time I felt 100% well.

But I think it was right before we went to Mexico in 2009.

We headed down there for my brother’s wedding. I was so excited – I had never been to Mexico before. I would be meeting my future sister-in-law for the first time, and I couldn’t wait to be able to participate in the festivities of the wedding.

It was fun trying lots of new foods, visiting the street stores, and getting immersed in a new culture.

I made certain not to drink any water that wasn’t bottled. I asked for no ice in my drinks at restaurants. I didn’t even eat food from street carts, because I didn’t want to worry about getting sick.

Well, everything was going well until about half way through the wedding reception.

I felt like I had been punched in the stomach. I had never felt so much pain in my life.

Over the next hour, I just tried to make it through the reception without looking like I was dying.

Which was hard – because I definitely felt like I was.

When we got back to the hotel, my parents were worried. As I bent over in half in pain, I announced to them, “If this is what giving birth feels like, I’m never having kids.”

I still debate which was worse.

My dad ran out into the dark streets of Mexico at one in the morning to try and find me medicine.

It helped enough to help me sleep, but the rest of the trip, I felt a little off.

I thought it would go away, but it really didn’t.

Over the next several years, I dealt with regular abdominal pain.

I think when people hear the term Irritable Bowel Syndrome (IBS), they often think it’s just a throwaway diagnosis. That you just have stomachaches occasionally and you just need something to validate how you feel.

However, the truth is, living with IBS is very difficult. It is a serious bowel GI issue that affects the large colon. It’s hard to feel sick more often than I feel well. It’s hard to not be able to enjoy meals because you don’t know how it’s going to affect you afterward. It’s hard to go to the doctor and have them say, “I know it sucks, but there’s not a lot we can do. You can only hope it gets better.”

It’s hard to have a diagnosis that doesn’t have a known cause or cure or treatment. Sometimes it feels like you are just thrown to the wolves and told to figure it out on your own.

And it’s hard to feel like all you can think about is how much your stomach hurts. There have been many days where I can’t even stand up because I’m in so much pain – where I’ve been pushed to tears because of how horrible I feel.

It’s hard to feel like you have an “awkward” problem. I had a hard time even wanting to write about my experience because it feels kind of taboo. No one really wants to hear about your digestive problems, even if it’s something that so deeply affects your life.

It’s something that you really can’t understand unless you’ve experienced it yourself. And even if you do have IBS, it may  be totally different than someone else’s.

When I first started going to the doctor with my symptoms, they were worried there was another underlying reason (such as Crohn’s or Ulcerative Colitis). I had three colonoscopies in a year. Trust me, if you don’t have to have one until you are in your forties or fifties, consider yourself lucky. I also had an MRI, multiple ultrasounds, and tried various medications.

While I’m glad I didn’t have any crazy disease, it was frustrating to go through all those tests. Occasionally, a test would come back with something abnormal, which would prompt them to push for further testing. However, further testing would come back normal – which I was grateful for – but to be told IBS was “probably” the issue felt frustrating. It felt like it was just the fallback diagnosis when they felt like giving up.

Since then, I’ve done a lot of research into IBS, and I realized it’s more than just a throwaway diagnosis. It’s something that affects a lot of people, and it can be hard to deal with.

I don’t mean to be all doom and gloom – there are things you can do to lessen the symptoms. But as someone who has struggled for a long time to not feel well, I know I appreciate reading posts from others going through the same thing. It’s nice to know you aren’t alone.

If you are coming to terms with an IBS diagnosis, I thought I’d share a few tips that I’ve found helpful.

1. Find a supportive doctor

One of the most frustrating things in the world is feeling like your doctor just thinks you’re dumb. I’ve had doctors say I’m just too stressed, or I’m overreacting. While I know I’m a bit of dramatic person, the pain I feel on a daily basis is not just to get attention. Stress can worsen the symptoms of IBS, but it’s not necessarily always the cause.

When we were in Utah, I finally found a physician that I really liked. He listened to me, and he helped me come up with a plan. Unfortunately, we moved soon after to Colorado, and I became pregnant shortly thereafter. My stomach issues actually went away while I was pregnant (both my pregnancies), which was nice (except, you know, I was throwing up multiple times a day instead)! A few months after I had Oliver, I started trying to go the doctor again, and I eventually found an amazing physician.

She is very understanding, and she doesn’t just jump to medication. She actually was the first doctor to suggest that in addition to IBS, I likely have something called Interstitial Cystitis, which is basically irritable bowel of the bladder. It explained why I always seemed to have a UTI when I was tested and a lot of the pain I felt. People who have Interstitial Cystitis often have IBS as well. All the symptoms fit me to a T!

2. Find triggers

While there are certain known triggers for IBS episodes (such as greasy foods, dairy, etc.), there may be something else that cause problems for you. I highly recommend keeping a diary for a few weeks where you write down everything you eat, how you feel before and after, etc. It can be very insightful to helping you figure out triggers.

You can also write down different notes about things that happened during the day and see if something non-food related is affecting your symptoms.

3. Manage Your Symptoms (The Best You Can)

This is a hard one. There are certain medications you can take that can help lessen the severity of IBS. I’ve taken a few, and honestly, one of them just made me feel even worse, and the other one just made me loopy and sleep for way longer than I should. I’m not entirely convinced it even helped – you know, because I was asleep the whole time!

You should work with your doctor to see if there is a treatment plan that will work best for you. Chances are, your doctor will suggest a probiotic. This is something that we’ve been told to use with both our boys (both suffered from severe GERD. Jack had a lot of other digestive problems until he turned three). While I haven’t always been the best at remembering to take one, when I consistently do, I do feel like it helps.

4. Try Probiotics

Not all probiotics are the same. My doctor emphasized to me recently that sometimes it takes trial and error to find the right probiotic – there are different strains that may work better for you. Some are more potent than others, have more “good” bacteria in them, and are just held to a higher standard in their processing.

4. The severity can vary

Somedays aren’t as bad as others. I know that’s the case for me. I’ll wake up occasionally with just a mild stomachache, and I’ll think, “Hey, this day isn’t so bad!” But then other days, I can barely even leave the couch.

It can vary from day to day, and person to person. While it’s a fairly common issue among adults, there are still a lot of unknowns. The fact is, we don’t know why some people are affected by it and others aren’t, nor do we know why the severity is worse in some people.

5. Exercise

When you aren’t feeling well, one of the last things you probably want to do is exercise. I know that’s the case with me. However, it really can help you feel better. When I can push myself to get up and exercise – even if it’s just a walk – it not only makes me feel better, but it lifts my spirits as well. It’s easy to feel discouraged or depressed when you don’t feel well. The endorphins released during exercise can be healing.

6. Drink Water

I think one of the “medications” for many ailments in life is water. It helps flush out toxins, helps you feel less bloated, and it can just make you feel better all around. This may not be the case for everyone, but for me? It definitely helps.

7. It’s not just a stomachache

I think when people hear IBS, they often think it just means you have stomachaches occasionally. And as a result, they don’t feel like it’s really that serious. But it’s more than just a stomachache. Don’t feel like you have to explain yourself to anyone.

IBS can make you feel crampy. It can make your back hurt. Your whole abdomen can feel like it’s just falling apart. It can cause constipation, or diarrhea, or even both. Sometimes, the pain can make you feel super nauseated. I sometimes tell people I feel like I constantly have some kind of food poisoning.

8. Try to be Positive

This is a hard one for me. Some days, the pain is all I can think about, and I find myself telling Forrest about 20 times, “I feel so sick.” I try not to, but sometimes, it’s hard to be positive when the only thing your mind can go to is how much you feel sick.

However, being positive can help. It can help you feel less stressed. Stress is certainly something that makes my IBS worse. And I think positivity can certainly be an antidote for stress.

9. It affects many people

Many, many people suffer from IBS – up to 20% of adults suffer from some form of IBS. Around 15% of children suffer from it as well after the age of five.  You are not alone. Even if you don’t know anyone personally – or you don’t feel comfortable talking about it with friends or family, there are tons of support groups and forums online. Find someone that you can talk to. Even if you just lurk around on the Internet, it can make you feel better to know others have gone through what you have.

10. Control Your Diet

Don’t eat to fullness. Overeating just makes things worse. Eat smaller meals throughout the day. Avoid foods that you know make you feel ill.

Some of you may remember that Jack used to be on a diet called the low-FODMAP diet. It’s actually something that is highly recommended for people with IBS. It doesn’t allow a lot of foods (including spices like garlic and onions), but it is something that was developed and many people have seen a lot of improved success by following it.

Almost 75% of IBS sufferers see improvement when following a low-FODMAP diet.  I know that when we were good about making sure Jack was only eating low-FODMAP foods, his symptoms improved significantly. It’s something I need to be better about following myself.

11. Get Help

There have been times where I’ve just thought I’m just going to have to live like this for the rest of my life. But there’s no reason to feel that way. You do not have to suffer in silence. While there is no known cause or cure for IBS, there are treatments. Whether it be medicinal, dietary and lifestyle changes, or adding a probiotic into your diet, there are a lot of things you can do – even buying a Squatty Potty might help!

Don’t get discouraged if you try something, and it doesn’t work. Just like no case of IBS is the same, not every treatment will work the same.

IBS Symptoms:

Here are a few signs of IBS. If you suffer from these things on a regular basis, I highly recommend you visit with your doctor soon.

• Cramping
• Abdominal Pain
• Bloating
• Gas
• Diarrhea
• Constipation