Here are 5 things to know about Crohn’s Disease, if you don’t know about it – or me – already.
5. Crohn’s is a Disease
Okay, so that one was a given. Of course, something labeled Crohn’s Disease is a disease. Crohn’s is a disease specific of the gastrointestinal tract or GI tract. Crohn’s makes all the processes of your stomach more difficult because your stomach is fighting against itself. Healthy bacteria is seen as harmful, and your body induces inflammation to fight itself, which doesn’t just go away like normal.
This causes ulcers, intestinal wall thickening, and that leads to more inflammation in the cycle. Eating gets harder and more dangerous, getting the nutrients your body needs is harder, and your bathroom visits become that much more frequent. Oh, what a fun disease to have!
4. It can happen anywhere in your stomach, top to bottom, with issues on your outsides too
Because Crohn’s is a disease of the GI tract, it can happen anywhere from top to bottom, which is not necessarily helpful for a diagnosis.
Some patients will have issues that can be viewed with a ‘normal’ Endoscopy – a tube with a camera down the throat, and some patients have issues that can be viewed with a ‘normal’ Colonoscopy – a tube with a camera up your bottom.
Some patients require further tests, like me, that have to get scopes that look deeper into the stomach. I, for example, will be getting the Double Balloon Endoscopy, a scope that takes significantly longer, because they have to go in further to find the inflammation.
Because Crohn’s can happen anywhere in your belly, from entry to exit, having ulceration’s in multiple locations was a telltale sign of IBD, specifically Crohn’s. (See My Crohn’s Plan)
Crohn’s can cause kidney and liver problems, mouth sores, and can even help lead to osteoporosis. Not only can you have symptoms on the inside, but you can have issues on the outside. Skin problems, joint problems, and eye issues. Sometimes they will be present, sometimes not, making it harder to diagnose.
3. Most people take years to diagnose
With a disease like Crohn’s, finding the problem can be difficult. There is no specific test for Crohn’s Disease, and inflammation could be happening at the wrong place or wrong time for testing these things. For some, a colonoscopy and blood tests will prove inflammation, and a diagnosis and prescription will be made. But for some, it can take months, years, even decades to get a diagnosis, even if you have symptoms systemic to Crohn’s.
See the CCFA for more information.
Part of the perks of this disease is that no two people will be alike with symptoms. Yes, some symptoms will be shared, and some will have symptoms individual to themselves. I, for example, have not had a problem with fresh fruits or veggies to the extent that I cannot eat them.
For others, they have to avoid fruits and vegetables to avoid a flare up or bowel obstruction. Some have persistent diarrhea, while others have constipation. Some have night sweats, while others lose weight so quickly it’s scary. If you have this diagnosis, then you will probably have your own issues with YOUR Crohn’s.
I was lucky in a sense that my diagnosis only took us 2 years, but we are still in the process of figuring out remission. For some, they are still trying to put a name to a problem that has ailed their bodies so much already. It’s not something to look forward to, but a name or diagnosis mean’s so much to someone struggling with a problem, and not being given answers.
This was a much-needed answer to all of the questions I have had, it explained ALL of my symptoms, and it gave us hope for relief. After 2 years, you start to question if there is something wrong with you? Are you just crazy? A hypochondriac?
These past 2 years of me stressing out, and stressing out Philip with my non-stop questions and research, and it was all for a diagnosis. The diagnosis meant we could start a medication and hopefully, help me ‘feel better’.
2. You have to get comfortable with your body
Doctors will continuously want to feel around, and ‘apply pressure’ to your abdomen, so get prepared to offer your tummy up for every appointment. And this is a bowel disease, so you are going to be showing a lot of people your bottom area with a diagnosis of Crohn’s.
With colonoscopies and butt-hole surgeries, with check-ups after that, I have gotten pretty comfortable in showing my issues to my doctors. Not a real favorite area of my own, personally, but I never imagined I’d ever have to show off that part of my body to people standing behind me, examining it or studying it. (See My Crohn’s Journey)
Not only has Crohn’s help me with becoming more comfortable with that part of my body, but it also helped me find humor in poop jokes and all things bowel related. If you know me, then you know that I never shy from inappropriate topics or from speaking my mind, but before Crohn’s, ‘bathroom related issues’ were never in my conversations. It was one of those things that I never discussed. I didn’t talk about it, and for a few years in my marriage my husband was convinced I didn’t even ‘go’.
With my Crohn’s, all things bowels has taken over my life and almost every conversation I have during the day is based on them. I talk to the doctors about my bowels and stomach, and I talk to my husband, my friends, and my family. I write about them on my blog, and I share happenings from my disease. I would never have discussed bowels or anything of the like a few years ago, but I guess Crohn’s has helped me to find humor in them.
1. People don’t care and that’s okay
While some people will look into your disease, do the research, and find out just what’s going on with you, majority won’t. Some people will go out of their way to offer support, but I have also found myself in conversations with friends who question my issues, who haven’t read my blog, while strangers from all over the world are following my journey and wishing me well.
At first, I took offense, like “You didn’t read my blog?!”, but I view it as either you want to read it, or you don’t, it’s pretty simple. I have 900 Facebook “friends” but my page has less than 200 likes, so that kind of hurt my feelings at first. When it comes to having problems, everyone has their own worries and struggles.
You can’t expect everyone to care about another person’s issues , but if you’re my friend, I would keep up with your journey, because I care. Some people won’t care, and that’s okay because shitty bowel stories aren’t for everyone. – Haha.
So with that in mind, don’t cut us Crohnie’s out of your life. We make plans and break them. We do it all the time and it sucks. We can’t determine how our bodies will feel at any given time, but it’s okay. We are trying. We are struggling. We still need help sometimes, even if we haven’t asked and I am always willing to talk about my issues.
And I hope everyone reads this because you never know when a friend will take a disease to the intestines and never recover.
You never know when your life will change drastically and you have to completely alter yourself.
But, It Could Be Worse.
Thank you for reading, and for keeping up with My Crohn’s Journey.
Also found on The Mighty
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