If you read my last post for MultipleSclerosis.net you know I’ve been having stomach issues for several months. Pain and cramping in my abdomen, along with chronic diarrhea, have plagued me for too long. It also forces me to stay home. You don’t want to be far from a bathroom. My gastroenterologist prescribed several medications for me to try. One cost over $400, after a discount, for a two week period. Nothing worked.
(If you want to read my prior post click here.)
Tests and more tests
Last week I had a colonoscopy. I had one two years ago, but as my doctor said he had to get a closer look at what was going on. The fun (NOT) prep was the same as always. After the procedure was over I consulted with the doctor for the few minutes he allotted. All was clear. No polyps. They’d grow a culture to see if the bacteria they previously found in my small intestine (the reason for all the medications mentioned above) was lingering. He seemed annoyed at my many questions. I was annoyed by his demeanor. Results from the culture found no lingering bacteria. That was good news, right? Then why did I feel so desperate and vulnerable? Because I’m living with the same symptoms with no answers in sight. I called my doctor’s office and told the nurse to ask the doctor to call me. I kept the phone by my side all day. I turned the volume up so I wouldn’t miss his call. He never did.
In the meantime, I called my neurologist to put her on notice about what was happening. The nurse gave me this message from the doctor: “I doubt your issues have anything to do with MS.”
The last article I wrote focused on the correlation between MS and the gut. How could my symptoms have nothing to do with my disease in one quick call? For now, I am living on Imodium, Bentyl, and lots of patience, but my patience is running out. I plan on calling my gastroenterologist and my neurologist to insist they discuss my symptoms. I refuse to allow them to brush me off with easy answers and no thought. I matter, and I must use all my advocating knowledge and skills to get what I need. I am tired of living with these symptoms and so is my MS exacerbation. My walking is difficult and I won’t drive on highways. I pray the feeling in my right foot returns.
Considering my options
If I’m not happy with the answers I receive I may go out of my comfort zone by consulting with a well-known neurologist who has done important research on the gut microbiome. He practices in another state, and it might cost more than we have, but I can’t live like this much longer. I am trying my best to de-stress, get whatever exercise I can, drink lots of water and meditate. My diet is bland, bland, bland because I am afraid of eating anything that might trigger more discomfort.
Have you experienced the same symptoms? What did you do to feel better? Medications? Special diet? Any and all thoughts are very welcome!