I read the ibs posts with great sympathy, frustration and sadness. I am a doctor who after being well my whole life suddenly developed abdominal bloating after eating. First it didn't hurt, and it was really a joke between my husband and I that I was having another baby (we already have 4). Then after some years the pain started after eating. Intense, just to the right of my belly button, and the distension would be so tense that I had to lie down, moaning after I ate. I started to eat less and less, and then I no longer joined my family for dinner. I started to get nauseated every time I put something in my mouth, and then when I even looked at food. I lost 25 lbs in one month. Then when I did eat, food started sticking in my esophagus. I never had diarrhea, but my stools were mushy and I had several every morning, which was not normal for me. Then the rushes started. They came from deep within my abdomen and washed over me. Blood shot into the top of my head, and my face and ears would burn. Sometimes the burning sensation would go all over the front of me, including my thighs. It was really disturbing, and I knew something was really wrong at this point. I was also having really weak spells after eating, and I couldn't think straight and felt really sick in a nondescript way for hours on end, and then it would just clear up. I often had drenching sweats in the evening and at night. I developed muscle weakness that came and went inexplicably.
It is hard to really describe how impossible it was to get care. To get a diagnosis. I first played by the rules. I went to my primary practitioner who is usually great. She did some basic tests and reassured me. Then I started on the treadmill of seeing specialists. I never understood the complaints patients had about their doctors until I became a patient. Now I get it. There was never really enough time to convey to them what my symptoms were. How deeply I was affected. How it had completely changed my life. I had 4 kids I couldn't really tend to. I had trouble buying and cooking food for my family because of my revulsion to food. Yet I was hungry. I had stopped working somewhere along the way and was desperate to solve the puzzle of why these symptoms were happening.
After seeing numerous docs (an internist, neurologist, gastroenterologists, endocrinologist) who didn't seem to give a damn and didn't really try to dig deep, I began to see the game. Label me with a nonsensicle diagnosis and wash you hands of me. Irritable bowel syndrome. Eat more fiber. Eat FODMAPS, and of course multiple suggestions that I see a psychiatrist. Out of desperation I did go to a psychiatrist, who said I was not mentally ill, but he felt I was just sick and frustrated. This made no difference to my docs, who kept suggesting that I seek psychiatric help.
I will make a long story short. I felt sick, which meant I was. I finally realized after 4 years I was the only one who would find the cause. I put together my pituitary hypothyroidism, bad join pains and bowel problems and tested my self for Yersinia enterocolitica serology and it was highly positive (1:800 titre). My docs were uncooperative so I put myself on antibiotics for one month (2 weeks of doxycycline and 2 weeks of Septra) and two months out of this I am steadily improving. I must still be careful what I eat, but I think my gut is recovering from years of this infection. And you know, I saw 25 or so docs or alternative practitioners, and non of them had done even a stool culture on me (but I had multiple ct scans mris and all sorts of fancy expensive tests).
These tests were ordered not out of a thoughtful desire to diagnose me, but to just order something to get me out of the office. I remember asking one gastroenterologist what he felt was causing my symptoms. He said " a lot of things could cause it" When pushed for some thing more specific, he just kept repeating that a lot of things could cause my symptoms.
When I think back to why it was missed, I feel that docs don't do something called a differential diagnosis any more.
This is where after they have talked to you, and examined you (which most docs didn't do) they write down a list of the possible diagnosis you may have. This is meant to guide them in ordering investigations. Kiind of ruling out things as they go along. Instead there was always a test ordered, and when it came back normal, they would just tell me I had ibs. They would not go back and think, "what have we missed diagnosing?".
I was always adamant the Irritable Bowel Syndrome was not a diagnosis, it was just a description of symptoms. One needed to find the cause so that it could be treated. this is the basic mistake being made with patients who have my symptoms. Somehow this nonsensical term has come to be accepted as a diagnoisis and no one even looks properly for the cause. All of you out there have a diagnosable and treatable cause for your symptoms. If all tests have come back normal, it is most likely infectious. In medicine, we now know that over 90% of infectious bacterial cannot be cultured by our standard lab techniques (they can however be denmonstrated with experimental genetic probes). Clinical medicine generally lags about 25 years behind current scientific knowlege. Mine was detectable through antibody testing. I ordered a test on myself called Yersinia enterocolitical serology which was positive (1:800 titre) which suggested a recent infection. This is a nasty organism. And Lord knows what else I was carrying in my gut. this bug is difficult to culture, even if someone had tried, but of the many docs I had seen, no one had even ordered a simple stool culture.
My suggestion to those who have ongoing symptoms and no cause found is a trial of antibiotics. Doxycycline 100 mg twice a day is a good one to try without knowing exactly what is in there. It is antibiotic and antinflammatory. If you get better, even temporarily you have your diagnosis. Some times you need more than the standard 7 ord10 days to get rid of a longstanding infection. I had been of antibiotics twice for 10 days, and although my symptoms temporarily improved, they did not go away until I took one full month.
Don/t expect your standard mds to be on board. You may need to find an alternative practitioner. like someone who treats lyme to give you a longer course of antibiotics.
If antibiotics don't help, politely ask your doc to write a differential diagnosis of your symptoms for you. Ask him/her what has been done to rule in or out what is on the list. You may both be surprised at how sloppy the detective work to find your root cause has been.
I for one, am disgusted with my doctor collegues. They are disinterested, sloppy, and far too eager to look at a middle aged woman and blame everything on psychiatric causes without carefully thinking through the problem.
I wish you a firm diagnosis,