Crohn's looks different for everyone

[MizzSarah]

Crohn's looks different for everyone but we all relate in our battle with an ongoing feud with the toilet. Sometimes I can't help but feel annoyed that my Crohn's is different then those I read about on the forum. It almost makes my Crohn's seem---fake.


Yea my feud with the toilet is real
Yes I have unbearable abdominal pains
Yes my colonoscopy showed Crohn's
Yes my joints make me feel like I'm decades older
Yes
Yes
Yes
But why didn't I have a major weight loss?
Why is my inflammation elevated in blood work but not extremely high?
Why is my blood work almost seemingly normal?


Why is my Crohn's mocking me in every test that I ever had? It's like my body is lying to itself and the doctors think I'm crazy because of it.

 

[ronroush7]

I don't know why but we are all here for you.

 

[Red Rabbit]

Hello MizzSarah

Your Crohns is definitely not fake. As with everything it is not uncommon to not tick all of the symptoms in the list. The doctors know this.

Just remember that you know your body better than anyone and that if you are not well you need to keep pushing the doctors until you get the treatment that you need.

I have had years of doctors fobbing me off until it was far far too late. I know what it feels like when nobody believes that you have Crohns. I'm sure many of us here have had similar experiences.

Don't take no for an answer and don't let anyone make you feel that you are not ill.

 

[Pilgrim]

My daughter was diagnosed with Crohn's 3 years ago. Hee blood work is almost always good. ESR and CRP are fine. The only way we can measure her inflammation is by a fecal calprotectin test. Or scopes.
If your doctor is doubting you, you could ask for the fecal calprotectin test. It might be more reliable.
Second opinion might be in order too.

 

[MizzSarah]

Unfortunately the only way doctors have been Able to determine the stage of my Crohn's is through scopes and elevated inflammation in my blood work. Everything else comes back a little elevated over normal but not as high as some with this disease. My gastrointestinal doctor said he has other patients who the only way to determine their stage is through the way he's looking at mine. Still very confused though as to why this is the case

My daughter was diagnosed with Crohn's 3 years ago. Hee blood work is almost always good. ESR and CRP are fine. The only way we can measure her inflammation is by a fecal calprotectin test. Or scopes.
If your doctor is doubting you, you could ask for the fecal calprotectin test. It might be more reliable.
Second opinion might be in order too.

 

[Lady Organic]

my case is like yours.
My CRP rate can be elevated only when my disease is at an extreme stage. No weight loss or just a few pounds thats it when I come to advanced stage.
maybe fecal calprotectine could be a test for you to try and see if it can predict or announce a flare. this is a relatively new test, a stool test.
In my case its barely effective
So my best bet consist in using a flash light and inspect carefully my stool :frown: I am better than the calpro to determine a debuting flare. Through the years, you will come to know yourself and your dr will come to know you too. GIs know blood test are not reliable for every IBD patients.
And yes, scopes are the best way for anyone with IBD to determine the severity of their disease activity.

 

[Red Rabbit]

My example of Crohns did not include any weight loss until I had a severe blockage with continuous vomiting and some watery stool. At this stage, my bowel had fistulised internally so badly, it blocked my bowel completely. Only a CAT scan or MRI could see this as my Crohns has always been in the small intestine.

My bloods show inflammation
Colonoscopy may or may not show inflammation at the ileum
Didn't lose weight
But I did suffer a lot of severe abdominal pain

Despite my repeated experience and history of Crohns, the doctors failed to respond until I had a medical emergency.

I personally disagree with this softly softly approach. If there is evidence of any Crohns, then treatment is necessary until whatever test results are under control. You may have to fight your corner to get the treatment you need when you need it.

 

[mere282]

Everyone is different but I understand your frustrations. I've had people comment on my weight either it's up or down.
There's so many factors.. my specialist told me depends on disease location. Plus your eating habits before getting sick. Some of us are hard wired to try and eat regardless.. your metabolism plays a part. I usually don't lose a lot of weight unless I'm really sick.

 

[valleysangel92]

I completely feel your frustration. One of the many cruel things about this illness is that it impacts people in so many different ways and no two people are affected in the same way. It's frustrating because it means that when we visit doctors they often say we must be doing ok because we aren't having particular symptoms.

Like many here, my blood results are often fine even when my insides are a total mess and I'm actually very sick. It makes it very difficult for my doctors to get a true indication of how unwell I really am but I'm lucky because my doctors have realised this and have adapted the way that they treat and test me accordingly.

Try keeping a diary of your symptoms in the lead up to your next appointment so that you can show your doctors what things are like on a day to day basis. My medical teams find it very helpful to have an in depth view of how my body is coping and the levels of pain etc that I am experiencing.

 

[Red Rabbit]

The diary is a good idea. I think I'll try that!