What Does Crohn's Disease Feel Like?

Updated: May 26, 2019

What does Crohn's Disease Feel Like

What does Crohn's Disease feel like? Well I can tell you because I have lived with it since 1999. Then again, I have had most of that time between now and then in remission with no symptoms. Sometimes I even wondered if I had Crohn's Disease and maybe the doctors had it all wrong? Then it would rear its ugly head! I am writing this post for those of you who have just discovered you have this disease and to give you hope. In saying that, I am not a doctor. I am not qualified to give you advice. I am not a nutritionist. What I am, is someone who had had more than 20 years of this crap (lol like the pun) and I am sharing my story. What has worked for me, may not work for you, but after consulting with your medical practitioner, maybe you can try my methods, and maybe it will help you. This is probably one of the longest posts on this blog because we have a lot to cover, so stay with me if you want hope.

What it feels like to have crohn's disease
My Crohn's Disease Diagnosis

It was six months after my brother, Gary took his life. You can read the story here. Could Gary's death have triggered my Crohn's Disease? Possibly, there are some who say stress causes it, but to be honest, in hindsight, I had suffered health problems since I was about 19. I was treated for Endometriosis, and yes, I had a few spots of this disease, but for the pain and discomfort I had, I wonder if that was not the issue and it was really Crohn's. I will never know, but my gut feeling is that it was Crohn's and not Endometriosis that caused me so many problems in those days. In fact, I went on to have two healthy girls despite Endometriosis and apparently I should not have been able to conceive with this disease. By the way I had over 10 laparoscopies for Endometriosis and each time I only had a few 'spots'...go figure! That's over 10 general anaesthetics I probably didn't need and that's not counting the ones I had for Crohn's colonoscopies.

what if feels like to have crohn's disease
My Symptoms

At the time, when it was thought I was suffering from Endometriosis, my symptoms were:

  • Bloating

  • Never feeling like I have been to the toilet even though I have

  • Pain ----lots of it

  • Fatigue and exhaustion

  • A feeling of being unwell without being able to describe it

  • Always feeling like I needed to go to the toilet

  • A pressure in my pelvis

what it feels like to have crohn's disease
How I Discovered it Was Crohn's Disease

At the time there wasn't the internet like we have now so I spent a lot of time in the library looking up medical text books about my symptoms. I knew there was something drastically wrong with me. It just wasn't normal to be in so much pain.

At the time I had two young children and was working a part time job.

One day at the library I read my symptoms and I just 'knew' without a doubt I had Crohn's Disease. I had never heard of this disease before in my life. My specialist had performed a colonoscopy on me, and when I went back to his rooms for my post consultation as I sat in the chair I said to him (Dr Brook's #RIP) "So is it Crohn's Disease?" and I swear he nearly fell off his chair that I knew what it was. He replied "yes".

I informed the doctor that I had looked up in the library (remember before forums and internet) the treatment and I would not be having none of it and I would look after myself with exercise and diet. He reluctantly agreed to trial this for a couple of months and if it did not work we would go on the heavy meds.

I had a lot at stake here, I did not want those steroids under any circumstances.

What I did

I made a pact with Dr Brooks that I would not take the steroids but I agreed to Mesasal and I would treat myself with exercise and diet. He was of course not that impressed with my self management but agreed to give me two months and if things were not in control we would need to do something else.

So I went to town. I exercised every day and I ate the right foods. I gave up dairy and wheat. I actually became very well and Dr Brooks was very happy with my progress. I stayed on Mesasal for three years until one morning I woke up with a severe rash all over my body, and my joints started to swell up. It was decided by my GP that I was having an allergic reaction to the medicine, and that my friends was the end of that! I refused any other drugs after that scare.

What it feels like to have Crohn's Disease
Flare Ups