What Does Crohn's Disease Feel Like?
Updated: May 26, 2019
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.
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.
At the time, when it was thought I was suffering from Endometriosis, my symptoms were:
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
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.
I've had a couple of major flare ups however I've never had to have an operation. I totally blame myself for the flares as I went off my gluten free diet. If you were to ask me my most favourite food in the world (and this is hard to believe but it is the truth), I will tell you hot white toast with lashings of butter melted in! Yes, that's my favourite and when I was well I fell back into the evil clutches of my beloved white bread.
On my flare ups I again went on a strict diet and lifestyle change. You can read that post here.
At the time of writing this post I am having the nastiest and most scariest flare I've ever had. This time I am 100% committed to never ever letting my guard back down no matter how well I feel. I have realised that Crohn's Disease is a lifetime illness and it must be managed properly. Again, I am not taking any meds. I've had some steroids and they just don't agree with me, I've been very sick and in a lot of pain. As I have disclaimed everywhere on this blog, this is my choice and I do not recommend this. It is just a personal choice.
I will continue to write updates on this blog regarding my Crohn's and what I am doing to keep well. I will also continue to share recipes and the supplements and herbs etc I take. My best advice is to have faith in your body and to concentrate on eating an anti inflammatory diet and take anti inflammatory supplements. I will stress again, you must consult with your doctor as I am not medically or nutritionally trained and I am only sharing what has worked for me and my body.
I wish you all the best on your journey and pray that one day, a cure will be found that won't involve medicines that cause patients to have terrible side effects or create other medical problems.
The last six months have been filled with fatigue and pain and what I did not know was a life-threatening Psoas Abscess was brewing inside me. You can read the full story here, I am pleased to say though 3 months after the operation in February 2019 I am feeling, fitter, healthier and happier than before.
You might like to investigate these products that I use.
Slippery Elm Bark - ok this one can be hard to swallow but I've found it very helpful in helping my Crohn's Disease. I use this particular brand because it forms a thick paste. I've tried just drinking it with water, yuck! I've tried mixing it as a paste and just swallowing it as fast as I can, yuck! Then I decided to blend 1 tbl of Slippery Elm, with a handful of fresh strawberries, a handful of fresh blueberries, 1 tsp cacao and some fresh mint leaves and mixed with about 1/8 cup of almond milk! Bingo! It's edible! You can play around with the flavours yourself.
Turmeric Elixir - This is another one I wasn't sure I could stomach, but it actually grows on you. I find it I just have a small cup of Turmeric Latte made with Almond Milk it is quite comforting.
Probiotic - I sometimes use a powder and sprinkle it on fruit, yogurt or in a smoothie. Or if I don't have time I take a tablet.
A slither of fresh ginger. If it's too spicy for you try it with some dried fruit like currants.
A handful of fresh blueberries.
A teaspoon of Hemp Seeds.
120 ml of Organic Aloe Vera Juice. I buy mine from the local Farmers Market but you will be able to purchase it anywhere online or in a health food store. Always go for quality.
Yes, all the above is a bit of a ritual, but as they say habits form in 21 days and if it helps you then it's worth it.
As well as that you then need to concentrate on eating healthy unprocessed food. Mainly homemade if possible. I like to grow my own vegetables and microgreens because there is something very rewarding in adding your home grown to your food.