12 things Crohn’s sufferers wish you knew

Crohn’s often pops up in the news these days, which is great for highlighting the disease.

More and more celebrities are being open about living with the disease and the side effects of the medication, which is not easy given the common misconceptions attached to Crohn’s.

I was diagnosed almost 6 years ago and have written several posts about it. I try to be as open about it as possible, there is no point in writing about it and not being honest.

With that in mind here is a list of things Crohn’s sufferers (or me, at least) wish you knew:

1. Crohn’s is not IBS (irritable bowel syndrome).

No, it is an IBD inflammatory bowel disease. Don’t get me wrong IBS can be debilitating (I was misdiagnosed as having IBS for many, many years) but they are two very different things

2. No two Crohn’s patients are the same.

It affects us all differently. Some may suffer less or more than others

3. Some medications work for some and not others.

The disease is not one size fits all

4. Crohn’s cannot necessarily be controlled by diet.

Yes, some people have “trigger foods” but others (like me) don’t. Please don’t imagine that all people with Crohn’s could control their symptoms simply by changing their diet. I certainly wouldn’t have had 8 operations, have infusions every 8 weeks and daily tablets if all I had to do was avoid a certain food.

5. Crohn’s flares can be brought on by many things.

This includes being poorly or run down, food poisoning and stress.

6. There is no cure.

Even if an affected part is removed it can come back (as is the case with me)

7. Please don’t compare it to cancer.

Hearing “at least it’s not cancer” is not helpful to someone who is undergoing aggressive immunosuppressant therapy, steroids, operations and so on. Neither disease is pleasant and both can be life threatening

8. We’re not all skinny.

I am a good example of this seeing as I am classed as obese

9. Crohn’s patients can suffer hair loss.

Again me! I have lost a lot of hair twice over the years since I was diagnosed. The first time was following a horrendous operation when I nearly died and more recently as a result of either being very poorly or the new medication I’m on. It’s growing back now so if you see me with hair all over the place this is why!

10. Crohn’s can affect any part of the gastric tract from your mouth to anus.

Oh the joy!

11. Crohn’s isn’t just a pooing disease, it can affect your whole body.

People with Crohn’s can suffer with all sorts of other illnesses as a result of having the disease including arthritis and vitamin deficiency.

12. Crohn’s doesn’t just affect us.

It has an impact on all our relationships. It puts a lot of stress on our partners, children, family and friends. It is hard to see a loved one go through the suffering of Crohn’s and, as it is an “invisible illness”, people might think “she looks OK why can’t she just get on with it”. It can be hard to comprehend why a friend cancels at the last minute but having to plan a trip out around the toilet facilities kind of takes the fun out of things and frankly we are knackered a lot of the time!

My mum wrote an account of being the parent of a Crohn’s sufferer.