How Do You Deal With All That? (IBS)

 

This is a question I get a lot. When people hear about my diet restrictions or my flares, this is usually the response I get. More often than not, I shrug my shoulders and say “I just do. I don’t have a choice.” and that’s the end of it. There aren’t a lot of people who care to learn more about what’s going on with my body. And I don’t force the conversation.

But, I thought about it. Maybe some advice would help other people who are going through the same thing. After all, that was the point of my blog. After I became symptomatic and then was diagnosed, I couldn’t find information that helped me. This might be advice that can help someone or spark a conversation with their support system. And that makes me happy to think about.  🙂

First of all, I have been going through this for twelve years. By now, I know my body. I know what I can eat when my body is going to flare, what my flares are like and when I can push myself. I don’t cross those lines. It can be tempting, but I can’t take that chance. Over exerting when you’re in a flare or recovering from one can make it harder for your body to heal or it might take longer. Eating something you shouldn’t isn’t just about the flare you have to go through. It’s about what you’re doing to your body, the flare it endures and the recovery afterward. If you have depleted energy, working out can put you through a flare. But, now your body is recovering from the workout and the flare. Resist the temptations. Listen to your body.

Accept it. I learned to accept that the problem with my digestive system is that it doesn’t know how to function. This isn’t something that can be fixed with surgery, a pill or a tonic. It’s something that I just have to deal with. It’s something I’ve learned to accept. There is no cure for me. And that’s fine. Because I’m not dying. There are times it feels like I will and a couple of times I almost did. But, I’m here. And if that means a restricted diet and dealing with a few flares here and there, I’m ok with that. It’s more than some people get. I stopped looking for cures. I stopped thinking there was something that would fix me. I just realized that holding out for something that wasn’t coming took up too much of my life. I let it go and hoped for other things. I focused on living life the best that I can, within my confinements. And suddenly life felt a little easier. I don’t need bread or rice to survive, so why should I be upset about not having it? I eat healthier and better than a lot of people. And that’s enough for me.

Also, I talk about it. There is such a stigma to IBS. Everyone thinks they know what it is. But, so many people are wrong. Talk about your experience. Express your pain and your emotions. IBS isn’t just about bloating and diarrhea. It’s about suffering and stigma, too. Some people don’t want to tell other people about what they are going through. Usually, these same people have problems asking for help. Whether it’s because they don’t want to appear weak or they are embarrassed, that can be a problem. Talking about what you’re going through can make you feel a bit more comfortable reaching out when you need it most. Talk to family or friends. If they aren’t supportive, find a group. I joined a couple of Facebook Groups, and there are a lot of people who don’t have an understanding support group. This would be a good place for you to find people who have similar experiences to yours.

But, the biggest help? Enjoying what I can! I don’t think about the foods I can’t eat. Instead, I enjoy the foods I love and can have. Cheese, tomatoes, quinoa, chocolate; you get the picture. I also read comics or play video games. This gives me something to enjoy when I can’t even leave the bed, or I’m trying to save up energy. I love teas and drink them, all the time. There are few things in the world that make me as happy as eating chocolate cake or cheese while reading comics and having tea.

Remember that these are all the ways that I cope. But, I hope they can help you find the ways that work best for you. Finding support can be hard, finding ways to deal without it is possible. You just have to know what makes you happy and what you can manage. Know that it will get better, you just have to make the most of it.

8 Comments Add yours

  1. Hi there, I just wondered do you follow a special diet? I suffer from IBS and multiple food allergies and an intolerance. Before I got diagnosed with IBS I got told cut gluten out to relieve symptoms. I will be making a lot of posts in the future about gluten free food, some lactose free products and nut free products, recipes etc. x

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    1. Thanks for the question! Over the years, my list of trigger foods has grown. Occasionally I’ll flare for a few weeks or a month and then realize there is something else I can’t eat. Currently; I have to avoid legumes, broccoli, rice, potatoes, flour, carbonated beverages, grains and I have to monitor my sugar and caffeine intake.
      When I first became symptomatic, I was told to go down to foods I know I can hve, for a week. Then, slowly reintroduce ones that are questionable. I had already tried low FODMAP and it didn’t work for me. And even “gluten-free” foods don’t mean I’ll flare. There are GF oatmeals, breads and cereals that will still make me sick.

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      1. You sound like me! but my triggers are a little bit different. Have you ever heard of oral food allergy syndrome? On the summer months there are more groups of foods I can’t eat such as fruit. That sounds so difficult sorry I am not that clever I didn’t know what symptomatic was! What is FODMAP? And also that is very interesting, how did you find out there are GF oatmeals etc that make you poorly? I ask because even though I have cut out gluten , lactose and nuts I still have gut problems so I am off to see another specialist. they are saying I might have a mass cell activation problem.

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      2. Low FODMAP is a diet to control trigger foods, but a lot of the foods are still triggers for me. I would eat GF foods and flare. My flare involving a lot of vomiting and migraines, so I try to avoid them. A flare can be foir days and take seven to recover from, for me. So, when I started flaring with foods, I just cut them out. Even if there is a GF version, I won’t touch it. I ALWAYS read ingredients before I ingest anything. Regardless of diet, I’m going to flare once in a while. But, controlling my diet minimizes it. My diet essentially parallels the keto diet, so I joined a few groups and share recipes on my FB.

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      3. This sounds awful, I am glad you have it more under control now. Hearing that makes me think they misdiagnosed me with IBS!

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      4. Thanl you!

        It’s possible. It happens often. But, mine is an extreme form. Most people get cramps, sweats, bloating and nausea. The cramps can be very painful and so can the bloating. IBS is basically when your stomach doesn’t know how to function properly, which is why it’s called a functional disease. There is no test for it, so it is a diagnosis of elimination. That means that you can have something else and diagnosis can be hard to nail down. The important thing is to be honest about your symptoms, when talking to your doctor. I keep a list on my phone. When I get sick, I try to post my symptoms. If anything is out of the ordinary or a new symptom, I make sure to note it. In the beginning of my testing, this helped a lot. I recorded foods and how they made me feel, also. I went through all kinds of images and scopes. I am very confident and comfortable with my diagnosis. I have even accepted that there will never be a cure for me, maybe just ways to manage my symptoms. It really is all about open lines of communication and learning. That’s why I decided to share my journey. And I’m glad you’re sharing yours! 😉

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      5. Thank you for your in depth response Julie. I see, I thought that might be the case with so many triggers. My problem with recording food is I pass out a lot after eating and then I am too disorientated to think! The POTS syndrome is also a functional disease.. so if that comes back positive I am not so sure about IBS. I think I have a very weak stomach in general! It also good that you have accepted that there isn’t a cure, that’s half the battle. It is has taken me a long time to be ready to do it . A year ago I wouldn’t of been even able to read your post, because I am severely Dyslexic. Some people do message privately saying your posts are grammatically incorrect and have spelling errors, but like you say I feel its more about the message. And I don’t know about you but its very time consuming to explain to each person your condition! Can’t wait to read more, Morgan xx

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      6. My pleasure! I love chatting with people! I understand having stomach problems, I have a slew of them. Yes, it can be hard and some people aren’t ready for it. But, it can make it easier to be happy. I still try things, if they sound like they will help. But, I don’t get my hopes up and I listen to my body.

        Yes, it can be time consuming. That doesn’t bother me as much as the stereotype that IBS isn’t a big deal or is only about diarrhea. People make jokes or don’t care and that frustrates me more. I would rather have a day long conversation with someone who cared and accepted my diagnosis than people who don’t and think it’s all in my head or no big deal.

        I look forward to reading more if your posts, also!!

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