What is 'managed Crohns'?

Digestive health
1

It took around five years to get here, and for the last 8 months I've had a diagnosis of mild Crohns.

It's now what my GE believes is 'managed Crohns' with a calprotectin level of 100 vs 500 originally.

Following 2 months of mild steroids (oral budisonide) I had a short break before moving to a 5ASA (Pentasa). Both helped but the latter perhaps not as much.

I'm trying to figure out what 'normal' 'managed Crohns' would/could/should look and feel like. Your thoughts and experiences would be very much appreciated!

I still have a number of symptoms which overlap with IBS. The number 1 complaint being fatigue but all blood tests are all ok - so no anemia or deficiencies. I also have some intestinal pain or discomfort but it's not so bad, headaches most of the time, nausea with the fatigue, and a sore throat and irritated sinuses, perhaps from reflux. My bladder seems irritated too some of the time e.g when intestines are bad I need to wee a lot. It often wakes me at night, although maybe my bladder just isn't the world's best!!

I'm struggling to figure out what good looks like with mild Crohns. I've spoken to GP who would like me to explore the psychosomatic angle, in addition to further GE conversations. I'm arranging counselling as its all caught up with me recently.

Is it possible to improve from here and how do us Crohns patients simply need to just live with it and get on with it?

2

Hi matt,

From what i can gather, the crohns scale thing- number of stools, blood, pain etc, is what they go by.

Basically ive found unless im so sick im in hospital, thats about it! 6 monthly poke in the belly, bloods, off you pop.

Dont know if the pentasa causes headaches, mught be worth checking.

I take multi vit with iron, i am anwmic and have folate deficiency, but this doesnt seem to worry the gi.

Im not an exoert and its nearly 2 years since diagnosis, however it all started when i was 17. So mustnt grumble too much.

I hope you remain mild, without complications.

Very much feel we are on our own with it all.

3

I shouldnt type on my phone, excuse typos.

4

Hey Alfie, good to hear your perspective and experiences. I was worried this might be the case and we're left to struggle on through but I hear mixed stories about friends of friends who climb mountains, dig wells in deepest Africa, and cycle across the world. I was a bit artistic there but you get what I mean!

Take care and thanks again.

5

Brilliant!!! I do love the tales myself.

Takes all my effort to get off the sofa😃