5 Things New Patients Experience (but are afraid to talk about)

5 Things New Patients Experience (but are afraid to talk about)

The life of a newly diagnosed Inflammatory Bowel Disease (IBD) patient is filled with a lot of frightening and uncertain things. Even right before you are diagnosed, life can be frightening and uncertain. There are things you are too afraid to talk about. Things you don’t want to think about. But I say it’s important to go ahead and get these things established and out of the way so you can get on your way to establishing your new “normal” and the right treatment plan.

Diarrhea/Constipation

I realize that IBD is more than symptoms in the bathroom… but for many of us, that’s where the symptoms begin. Before I was diagnosed, I couldn’t say any of these words without feeling really embarrassed. Poo is taboo in most civilized societies. Who talks about their bathroom habits? I say, the sooner you start talking about it, the better. You need to be able to tell your doctor what’s going on. It can be embarrassing to talk about, for sure. Some people will ask you about your symptoms, and if you’re not comfortable telling just anyone, that’s ok. I would suggest you might even offer up the cause for the diarrhea/constipation. “I have bleeding, ulcers, and inflammation in my digestive system,” would be a good start.

Colonoscopies

I remember when I was going through the diagnosis process. I remember when my doctor wanted to schedule me for an emergency colonoscopy. Wait, what!? I fought it, too. I was in denial. I don’t need a colonoscopy! I’m too young for that!!! How very wrong I was. I did need to be scoped. I was just afraid. If they hadn’t scoped me, they never would have gotten me properly diagnosed… and I’m sorry to tell you, but as of now, it’s the absolute best and most accurate way to get diagnosed. No one, and I mean NO ONE, who is experiencing bad symptoms, is too young to get a colonoscopy.

Blood in Your Stool

Not every IBD patient experiences blood in their stool. For some, it’s just a little blood, for others, it’s a lot. GI bleeds can lead to anemia. Anemia can put you in the hospital… or worse. Again, this is something every patient needs to discuss with their doctor. Blood in your stool is not normal. Even with IBD. Blood in your stool is a warning sign that something serious is going on and you need to make sure you and your doctor work together to get it resolved.

Exhaustion

When your body is fighting a chronic illness, it saps you of your energy fast. This can be frustrating. You may find it hard to tell other people that you are tired all the time. It might be because you don’t want to admit it. Or maybe you are afraid they won’t believe you. Whatever the reason, you can’t deny the fact that you get tired quicker than the average person. And you know what? It’s not your fault.

Guilt

It’s easy to feel guilty when you’re sick a lot. You can often feel like a burden to your family and friends. Or you feel guilty for having to skip out on events or parties. Please try to give yourself a break. Be gracious. You are fighting a hard battle. You have to make adjustments. It’s ok to not feel ok sometimes. It’s ok to ask for help! There’s no shame in it. Try not to let it get you down. And remember you are not alone in your battle. There are 5 million people world-wide who are living with IBD every day. Support is out there.

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If I were to give you any piece of advice, it would be this: be open and honest with not only others, but yourself. Realize your limitations and accept them. You are not a bad person for being sick. It isn’t your fault. In your moments of weakness (and you will have them), remember what you do have, instead of what you lost because of your illness. Remember who your true friends are. And listen to your body. It is designed to tell you what you need when you need it.

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