Sensitivite intestine causing extreme 'off-time' esp after opening bowels

[DaMoJo]

Hello I'm in my ninth year (diagnosed age 37) of living with YOPD. About 16 months ago I suddenly was hit with a new symptom... The mere ingestion of food or even medication tablets would often set of an intense off-time period. Last year I had two separate one week stays in hospital trying to resolve by altering meds, tried Apo infusion pump, etc...

Nothing seemed to work out for me. Over time the issue has changed from an ingestion trigger to an egestion trigger. 9/10 after opening bowels I almost immediately go into some hyper off-time shock with body freeze symptoms. The nerves in my bowels become extremely sensitive. Furthermore, I open bowels 2-5 times per day so life is NOT FUN at the moment!!! I'm on the waiting list for DBS but won't get the surgery until early next year.

I'm surely hope this will resolve or reduce in some way.

Does anyone else experience similarities??

Thx,

Damo

[Blackfeather]

Wknow about the trips to the bathroom but I'm more in the 4 to 5 times category. If im stopped up rytary doesn't work until I can use a water enema to move things along. Its a real drag when your life and how you respond to c-l. Is all about managing your bm's. Why is it we don't have a pump that gives c-l medication to the blood stream instead of the colon

[LAJ12345]

Do you follow any special diet? I’m wondering if food sensitivities or imbalanced gut bacteria might affect this? There is an interesting book called gut and psychology syndrome which has a diet which has helped people with varying conditions. It might be worth a try as it sounds miserable what you are going through

amazon.com/Psychology-Syndr...