My Journey from C.diff to Crohn’s disease.
“Nobody likes to talk about their bowels, their stomach problems or habits. And that’s why Crohn’s disease is under-diagnosed and labeled as IBS. People lose their self esteem after diagnosis. That isn’t how this disease should run our lives. It’s time to be proud and fight our flares with self-esteem, we should laugh because life is too short and you never know what tomorrow could bring. Crohn’s disease scares me to death but I have two choices. I can let it run my life or I can run my life, smile every day that I’m given and remember that I’m never alone. I have to admit that there will be good days and bad days but at least I’m not alone. And above all remember that this isn’t just a death sentence as people live full lives with Crohn’s disease. This is my new normal and this is what I know so far about Crohn’s disease.”
What the heck just happened? Am I being a complete baby or just ungrateful that I got my diagnosis for small bowel Crohn’s disease after fighting a severe C.diff infection?
I mean they say “life could be worse.”
Then why am I sitting here staring at the TV like my life is pretty much over?
The fact you have a chronic disease isn’t easy and even though I’m only 2 days into my “new,” way of living I’ve managed to educate myself a lot through official medical organizations like MDMag.com, Cleveland Clinic and even personal stories from other ‘cronies,’ around the world and on Reddit.
The worst part about this diagnosis is that C.diff infection seemed to trigger this “predisposition,” disease to flare. I use quotes because it seems we have no other relatives or siblings with Crohn’s disease. And that’s the mystery but the truth is I’ll probably never know who, what, when, where and why and now I need to figure out how to make the best of life.
I know I’m not alone. Chances are if you’re reading this blog right now, you’re trying to learn more just like most people who get their diagnosis. And I just want to tell you guys, even though I’m two days in, we should have faith in remission, stick together and look for comfort in those we trust.
Maybe you are questioning the immunosuppressants like I did the first day of my diagnosis. The increased chance of infections and cancer are a little traumatizing but someone on Reddit did make a point about the medication. They said:
“I just started my immunosuppressants and look at it in this light. If you don’t take your medicine you risk not going into remission and causing cancer and more health issues. And if you do take your medicine then you risk getting infections or cancer but have a chance at remission and a chance at life again.”
Well, enough said, right? Kinda.
There’s no doubt the point was made, I should try to kick this, put it in remission and be happy to know that Crohn’s disease is not a death sentence and I could have something worse that’s untreatable.
Then I shouldn’t feel any type of depression right?
It’s completely normal to feel depressed when you’ve been diagnosed with a chronic disease. But you can’t let it keep you down because those are moments you will never get back, seconds, minutes and hours that are precious. I had to be a little blunt with myself and found that I’m wasting time laying in bed wanting to sleep all day if I feel well enough to go outside and do some housework.
After the last little while, I’ve come to the conclusion that living life to the fullest sick or not is the meaning of life. Being sick might slow you down but it doesn’t have to stop you from doing everything you once dreamed to accomplish.
I have a history of anxiety and depression. And when I got diagnosed I couldn’t think anything positive about myself. I felt I was just the burden in the family now. “Someone with a disease.” But my disease doesn’t define who I am as a person. I’m still me and I’ve got to fight those thoughts of depression and anxiety.
This is a subject I know on a personal level. I can confidently say don’t be afraid to ask for help and talk to a therapist. It does help and you don’t have to feel unhappy. Crohn’s is becoming more common and people do live full lives with this disease.
The funny thing is I’ve always been pretty good at disguising my depression and anxiety (as most people do) because who wants the world to know the truth? But when it was confirmed I had a chronic disease my whole world turned upside down and my mental health has never been worse. But it’s getting better each day and Reddit has an amazing community of ‘Cronies,’ if you’re looking for some comfort and you’re new to this just check it out.
How my journey and diagnosis for Crohn’s disease start?
This all started with a C.diff infection that kept going undiagnosed for a year. I was having tests done left and right. I had a colonoscopy that came back normal, I had an endoscopy that came back normal. The biopsies were normal aside from having a disaccharidase enzyme deficiency. The fact that everything came back normal made me wonder what the heck I could be dealing with because I never had issues with my digestion in my life. And disaccharidase issues can happen from secondary issues like C.diff. All the hospital tests I had looked normal, providers didn’t look concerned.
I was given a cocktail of antibiotics left and right, cipro, amoxicillin and more cipro. Nothing was helping with my chronically upset stomach and then eventually I was told I had IBS-D.
One morning, I was so upset and feeling sick. I went to the doctor again and insisted on a stool study and that’s when they diagnosed me with C.diff.
The doctor prescribed the antibiotics needed to treat C.diff and then it got better. After I finished my first regimen, I relapsed. My provider put me on Vancomycin. I got better and then relapsed 11 days later. Then I was put on a high dose which wasn’t controlling my symptoms anymore. Finally, the doctor had me do a Pillcam endoscopy and they found that C.diff had triggered IBD in my body, specifically “Crohn’s disease.”
And then my life felt like it was over and I would never be happy or smile again.
What I’ve learned about helping Crohn’s.
When it comes to Crohn’s disease people are different. One food might trigger a flare in you and it might be someone else’s ‘safe food.’ That’s what makes this disease so hard to treat. And it’s important to remember that food does not cause Crohn’s disease, it can just aggravate your existing condition.
Healthy eating, medication, exercising and mental health maintenance are important for managing Crohn’s disease. If you can follow a plan with your GI specialist then you’ll be on the right track to living a fairly normal life.
I’m not going to lie, I’m flipping scared. But I’m going to fight like hell.
And right now, I’m just barely starting to learn how to ‘live my new normal.’ But I’ll be back with updates and I hope to help those who are just learning they have Crohn’s disease or C.diff. I can always lend an ear, just leave me a comment below.
Stay positive and stay blessed.