Yet Undiagnosed Serious G I. Disorder
If anyone has symptoms like mine and/or has found a diagnosis or treatment, please let me know.
Three years ago, I had bariatric surgery and lost 100 lbs. Patients are told to expect nausea and constipation for a few weeks but my symptoms began to worsen and multiply. The nausea never stopped and no g.i. meds could reduce it. Then I started developing multiple daily severe urges to go to the bathroom — sometimes as many as twelve times a day, but mostly averaging about six times a day, It wasn’t diarrhea. It appeared as though my colon could only eliminate small amounts all throughout the day rather than release a normal single expulsion in the morning.
I underwent numerous x-rays, CT scans, a colonoscopy, endoscopy, extensive lab tests, etc., but nothing was found. My bariatric surgeon wanted to perform exploratory surgery on me but so far I’ve declined, because he said the only thing he might find is a hidden twist, but other doctors have told me that my symptoms don’t match those of a “hidden twist” not showing up on any CTs we’ve performed.
Since then, the symptoms have gotten worse. I began having what I now refer to as “food poisoning pain.” You’ve all probably experienced real food poisoning — the severe urge to go immediately, followed by severe pain, sweating, sometimes nearly passing out, until finally diarrhea is violently passed. This all usually happens over 5-10 minutes.
But my food poisoning pain is far more tragic — it begins the same, with an overwhelming rush to get to the toilet in time, but then… nothing happens. For the next 1-2 hours, I have to stay on the toilet and tolerate the unbearable pain as I feel my colon contents slowly make their way down to my rectum over a one to two hour period. I feel like I’m often about to pass out from the pain, and it is absolutely terrible feeling the contents slowly, slowly moving through the colon until they are finally near the rectum. At that time, the pain becomes unbearable and I go to the bathroom over and over again. When it’s all over, I can barely stand up. Months ago, this happened maybe once a week and now it happens almost every day.
There is a second rarer pain that occurs only once every few months (thankfully) — it awakens me in the middle of the night and is a 7 on a scale of 1-10. It is like a giant knife has pierced my gut. Doctors cannot explain it. When I’ve gone to the ER, they stop it with a shot of Dilaudid. And it disappears as mysteriously as it came. I have had appendicitis and can tell you that the pain from this g.i. attack is just as horrible as the appendicitis pain was. And once again, doctors don’t know what causes it.
Whatever I have, it is growing worse. I am sick every day. I often get very nauseous even after eating a small bit of food. I follow the FODMAP diet but even foods on that diet sometimes make me sick, and I spend a lot of my day on the toilet. The newest unfortunate development is that sometimes the food poisoning pain will start up but then suddenly stop even though nothing has made it all the way down to the rectum. That means that for the rest of the day I will be going back and forth to the bathroom, desperately trying to relieve myself, but having no luck for hours and many tries.
This scares me because I am worried that my colon is growing weaker and becoming less able to push out waste — that its motility contractions are failing.
I have seen six g.i. specialists, two bariatric surgeons, two internists, and a neurologist. Some have been horrible — I paid $700 for one consultation where the g.i. doctor refused a follow-up visit with me, and had his receptionist tell me by phone to “eat more fiber and drink more water.” Others have run tests and when the tests came back normal, they, too, had nothing further to say to me.
The g.i. docs prescribed many, many medications but none helped.
Only the neurologist had a hypothesis, that my lower vagus nerve may have been damaged during bariatric surgery, but he said if that were the case, there would be no cure for the damaged nerve.
Right now, this chronic sickness takes up most of my life. Foods I once loved suddenly now make me sick so I can no longer eat them. It’s good I’m not working because what place could accommodate a worker who spends 1-2 hours in the bathroom nearly every day and also has to go to the bathroom about six times every day?
Doctors have ruled out lots of g.i. conditions but can’t offer me a possible diagnosis so far. In October, I have what I think is my final doctor consultation — with a neuro/gastro clinic at a well-known research hospital. If they can’t offer any advice, I have to prepare to accept that this will be the rest of my life, unless one day some diagnosis and treatment are discovered.
I am grateful for the few hours each week when I temporarily feel no pain and nausea. It’s had to remember when I had a normal life.
If you have experienced anything like this or even have suggestions for me to consider, please respond. Thanks.