Hi Amy,
Have you ever heard of the term "synchronicity" or "serendipity"?
That's how it all came together for my treatment team.
The story is long.
Long before the GI and the Crohn's diagnosis, I had what I now see as the actual onset more than 7 years ago. I'm sure it was the disease back then because I ordered the old CT reports and the diagnosis. Everything pointed to Crohn's. I had narrowing of the small bowel and thickening of the wall right in the same place where Crohn's was found this year. That diagnosis was a probable partial obstruction of the small bowel of "unkown etiology". I was put on a liquid diet for about 2 weeks. Then to BRAT (Bananas, Rice, Applesauce, Toast).
After that my vomiting, upper GI pain, and diarrhea went away, and I was so frightened to eat anything. That partial obstruction was about the most painful GI experience I ever had, and they were concerned about surgery if the liquid diet didn't help. I'm sure I modified my diet enough so as to conform to IBD diets. I never followed up because the whole thing lasted about 2 months, and it went away after the liquid diet, and I was extremely cautious in eating habits. But that was also when they discovered the mesothelioma, so all attention went from my gut to my lung.
In the middle of this, I kept having horrible migraines, and I popped Advil and Aleve like candy. My employer forced me to use FMLA so my regular doctor started trying to calm the migraines to no avail. He threw his hands up and said "Go to the headache clinic at tne main campus!" My primary care doctor has NEVER given me bad advice or had an incorrect diagnosis. He's cold, clinical, and mean as hell, but he's never been wrong.
Enter the neurolologist. I don't know how I chose this "professor gadget" type of unconventional specialist. I think I just picked his name out of the hat. He's all wide-eyed and bushy tailed, and determined to get me to be able to drink milk and eat chocolate with no migraines. So he listened to my story and said whoa on the NSAID's because they weren't helping me, and he began treating me with triptans (I'm sure that's what brought on Crohn's was my extreme overuse and overdosages of NSAID's). The neurologist reviewed my records tapping his fingers. Then he said "Topomax? Did you ever have kidney stones?" Hell yes. Ouch! Thanks for the reminder! "OK, we'll try Lyrica".
He went on to tell me the clinical mechanism of Lyrica which is -
relate this to IBS and Crohn's - an "anti-spasmatic" and "anti-seizure" prescription. This was his own idea and experimentation. He believes migraines are the result of "hyper-active" brain neurons that react wildly to "triggers".
The anti-seizure mechanism of Lyrica calms the hyper-sensitive brain neurons back to a more manageable state. He said to take Lyrica every day, and it should bring the migraines down substantially. Then he prescribed a tapering-up schedule. This dude is like a walking encyclopedia. But by golly, he was right, the drug worked. He upped my dosage to 300mg in two doses, but insurance would not cover it, and my co-pay was outrageous, so I tapered down to 150mg which kept the migraines at bay.
After I had the lung tumor removed (benign mesothelioma), my blood oxegen levels increased from .94 up to .99 where they are today. Suddenly my migraines REALLY came down from (2) a month to (1) every 2-3 months. The neurologist set my case aside for study. He now theorizes that lower blood oxegen levels caused by lung dysfucnction contribute to increased migraines. He has 400 patients, and he said he's anxiously awaiting for one of them to have surgery for a lung-related problem.
Current. I got the new GI in January. He presumed from last year's colonscopy that I had "Mild Crohn's". He wanted a colonoscopy that he did personally, and pathology he could make sense of. He could not relate "mild Crohn's" to all of the symptoms I had. So we went through a number of IBS therapies, because every time I visited him, my lower bowel was spasming like crazy.
I was having a mini-flareup once, and he knew it. He said "So what if it's Crohn's? Lets say you have mild Crohn's. There's something else going on because your symptoms are too severe for what's showing up [in the first colonoscopy which identified "mild Crohn's" with a question mark] - this was prior to his official diagnosis. He read my case notes - the same ones my neurologist read. The GI eliminated medications that were counter-indicated. Then he blurts out "Lyrica. You can take Lyrica can't you?" I said yes but told him about the co-pay problem then we went on to another generic drug.
Finally the GI does the colonoscopy, and confirms what we already knew, he finds a precancerous nodule in the large bowel not (directly) related to the small bowel CD. Again, because my condition had got worse since the last visit, he insisted that something else was wrong. He prescribed the Entocort and said that should take care of all my Crohn's disease symptoms - whatever symptoms were left are not attributable to Crohn's disease.
5 days later I go to the neurologist. I tell him about my CD diagnosis. I'm whining about anxiety. He goes through the record-review-finger-tapping routine and suggests "Lyrica". We can increase my dose of Lyrica to 300mg, and take 150mg twice a day during the day so I can benefit from an "anti-anxiety side effect" from Lyrica.
The GI calls back with the lab pathology the following Monday which confirmed Crohn's and colon dysplasia. I'm still whining about anxiety, and he's wondering how I should treat the symptoms which haven't improved with the Entocort (after only one week). He says we could go to pred, but I might not like the side effects. I told him the neurologist suggested increasing Lyrica for anxiety, and even he (the GI) suggested Lyrica a couple visits back to ease my colon spasms and cramps.
He does a "hummmn" followed by"OK lets try this. Stay on the Entocort, but increase your dose of Lyrica to 300mg like that neurologist said, and see if that helps." I asked him how shoud I take it, and he said I don't know - take it how the neurologist said to take it. If you need a new prescription, call him and aslk him how to take it.
And that's how it "magically" came about. I upped the Lyrica which took away the anxiety almost immediately. The Entocort began to eliminate the Crohn's symptoms. There was still cramping left, but not as bad as before. So between the neuro and the GI, they devised a pretty darn good therapy plan Crohn's and IBS based on what I already use for migraines plus the Entocort - and it was a series of seemingly unrelated events and ideas.
The cramping and pain level I feel now is manageable, and it's still there, but all the other Crohn's autoimmune symptoms (flank pain, rear back pain from the abdomen, fatigue, joint pain, and even diarrhea has calmed) are pretty much gone. So when the GI said "Whatever symptoms are left are not attributable to Crohn's disease", I believe he's right. My colon apparently still spasms, so I agree with his IBS diagnosis.
Once again, "the river" (in my medical life) flows where it's supposed to, and it doesn't need me pushing it in another direction. The whole situation sort of worked itself out in a pretty novel way - which kinda blows my mind.
I'm left with a few interesting and probing question because of how this played out. I want to stress that both the GI and the neurologist are top-rated within the Cleveland Clinic and nationwide. I trust them and have faith in their work. Here are my questions:
- Is there a connection between Irritable Bowel Syndrome (IBS) and the central nervous system?
- If we go about treating IBS strictly from the GI angle, is it possible we're leaving out a vital piece of neurological or other "systemic" information?
- If there is a neurological connection to IBS, would that explain medical doctor's insistance that IBS is a "non-functional" GI disorder realted to a patient's mental health? If so, it almost seems they MD's are "subliminally" pointing us in the same direction that the "river is flowing": "it's all in your head"