Yet Undiagnosed Serious G I. Disorder

Posted by picoboulevard @picoboulevard, Aug 28 5:02am

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.

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Have you been to a Motility Specialist yet? I was having serious GI problems as well but my colon wasn’t moving at all . I would go for weeks with no BM but horrible pain, nausea, vomiting and the odd thing was I felt something was getting stuck in the middle of my esophagus every time I ate so I was afraid to eat or even drink anything! But my other symptoms came later in the middle of the night I would wake up with chest pains and feeling like I was choking or having a heart attack it was so scary at the time! I was sent to specialist after specialist first a visit with my primary care did nothing but prescribed acid reflux medications and sent me on my way ! Well I ended up in the ER with severe chest pains, choking, nausea, vomiting again did the usual tests blood work CT Scan , Urine tests nothing I was getting more and more frustrated! After several ER trips for all my symptoms they started referring me to different specialists Cardiologist,Pulmonologist,Neurologist, Neuropsychology,Rheumatologist, GI Specialist, Sleep Medicine Doctor, Gynecology, I was checked for everything imaginable! They finally sent me to a Motility Specialist had a swallow test done got choked instantly then they said oh we are looking at something so rare here we need more diagnostic testing so ordered a gastric emptying test it was abnormal so they ordered another test where you have a tube inserted up your nose and you where a computer monitor on your hip and every time you had to cough, vomit, burp, belch , stomach pain, choke or have chest pains you had to press a button. Lol it turns out that I was pressing it so much with all my symptoms they thought it had malfunctioned! Little did I know that this was the beginning to finding out what I had for many years! When they downloaded the data they were shocked to see what was causing my symptoms! It’s called LPR Larophaningo Reflux Disease which is the deadliest form of acid reflux because with all my symptoms I could have died in my sleep! After this diagnosis they sent me for one last test to see what was causing my choking as well. They did a test in the motility clinic called high resonance manometry test where they have you swallow a cup of liquid really slow then really fast like 20 times! Of course I threw up the liquid every time then they put a copper looking tube up your nose then have you swallow more liquid again while they take pictures on the monitor and watch what happens to your esophagus when you swallow, the tech that was doing the test felt so sorry for me because I was so sick during this test and when she finally saw the images of what was happening every time I swallowed, she was blown away she said oh you poor dear no wonder you have been so sick your LES ( Lower Esophageal Sphincter ) is not working properly ! I said what do you mean? She said that I had a very high rate of contractions in my lower esophagus and that everything that I was eating was being pushed back up at a very high speed! Of course I didn’t understand fully what all that meant! I waited for my test results and it came back as a rare disorder of the esophagus called Jackhammer Esophagus which was the cause of all my symptoms! Finally a diagnosis I was relieved but also scared to know that the only cure is surgery for this! 2 weeks after I was diagnosed I went in for surgery that repaired my LES also they did a Nissen Dysplundification which took care of my severe acid reflux disease LPR as well ! My surgery was a year ago and I have no symptoms now! My advice is this, never stop being persistent with finding a diagnosis! I had mine since I was a child and was probably born with it so don’t give up trying to get an answer! I know this was a long post but hopefully if someone else is having this issue maybe it can help? Good luck!

REPLY

Thanks so much for your very detailed response. I am so sorry you suffered so much until someone was able to give you the proper tests you needed. I was tested for motility timing and was told mine was extremely slow — over 24 hours for food eaten to be eliminated. But I have not been tested with high resonance manometry — it can be done at the colon level where I am having problems, so it could prove helpful. The only disappointing news is that if they do find that one’s colon is very weak in motility, the only available option right now is to insert a tube that somehow electronically stimulates the colon to increase its motility, and the device is still very new and not well tested. Also, one article advised that a diagnosed person would have to repeatedly be put on antibiotics, which is a little dangerous because it can build up one’s tolerance and make the antibiotics less effective in fighting serious infections.
Nonetheless, I’ll write to my main g.i. and see what he says about the manometry. Again, thanks so much for reaching out.

REPLY
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