My symptoms started when I was around 8. Spent many nights alone on the floor in the bathroom feeling like I was going to die. I had cramps like I needed to have a BM but couldn’t go. I started sleeping with a light on in my room as the fear of waking up with this pain in the dark gave me so much anxiety. My parents gave me tums and sent me to bed. Then I began having these “attacks” at random times of the day. I would sleep with Mylanta under my pillow and would just pray it wouldn’t happen. Every GI told me I looked to healthy to have anything wrong with me and sent me on my way. My parents pegged it as anxiety and told me I just needed to have more faith and not fear so much. That’s hard to do when your 12 years old and you’ve memorized where every bathroom is. There where days I was sick and in horrible pain and I had to just fake that I was ok because everyone just told me in my in my head. I have done EVERY diet modification you can think of with very little to no improvement. I am 37 now and I have seen 6 GI drs and am currently at U of M. Ive seen 3 diet specialist to help because I have slowly over the years taken almost everything out of my diet and at one point was living on 3 things and water. I was diagnosed with ARFID( Eating disorder, basically FEAR OF FOOD), Dumping Syndrome and IBS-C and SIBO. I’ve had TEST AFTER TEST AFTER TEST and everything looks normal. Ive even seen a Natural Path and NOTHING HELPED. 2 years ago I almost took my own life. Unless you live every day with chronic pain and something so irregular that you can’t even plan things and try to have a normal life, life just isn’t worth living. Every day is still a struggle. I’ve had to become very introverted and don’t leave the house much. Having to withdrawal like this has cause horrible depression. If I do have to go away from home I have to plan my eating around it and make sure I will have access to a bathroom. Don’t let anyone tell you you are not feeling what your feeling. Just because they don’t understand doesn’t make it not true. My Dr told me once “People with this type of illness that no one can solve have more problems with depression then people who have cancer”. Its also something that is very embarrassing. Due to that it causes SO MUCH ANXIETY!!!. I never know when its going to hit or if ill be able to leave the bathroom for hours no matter where I am. Constant painful gas keeps you away from people. BIGGEST FEAR IS NOT HAVING A BATHROOM. Lots of fun opportunities I’ve had to pass on because there was not going to be access to a bathroom at all times. I’m hear fighting every day for my kids and because I know I’m not alone. BE YOUR OWN DR AND ADVOCATE!!! Don’t give up.

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