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“Know Thy Body” and “Let No Doctor Tell You Anything Different” Written by a member 8/27/04
My experience has shown me, repeatedly, that physicians, when taught and learned their professions, they are capable of making an honest evaluation and definite diagnosis regarding illness and diseases, but AGAIN, only up to the knowledge of what they were taught or studied.
MY STORY: I am now 53, divorced, youngest son just left home this past May. At age 51, after 2 exacerbations, repeated MRI’s, CAT scans, tubes and tubes of blood being drawn, the diagnosis comes up “Multiple Sclerosis”. I did go for a second opinion so as to make sure they were seeing what they were seeing. Ok, I can live with this. First diagnosis from a radiologist was that I was having a stroke. No other symptoms leading to a stroke, just “a stroke”, I had an answer for the recent and upfront things that were happening to me.
The first neurologist physically read my MRI and did not agree with the radiologist and told me what he suggested and what is the next step and let’s get started. So, he did not hesitate to order my injectable meds and explain the procedure. In the meantime, I have this other condition of having repeated bowl obstructions, never giving it a real name over the past 18 years. Food gets caught in my colon, along the digestive path, backs up, and I vomit stool, and the next thing I know I am having inches and inches of my colon removed. Between 1985 and 2003, I have had 5 hernia repairs, my gallbladder removed surgically rather than laparoscopy, 2 bowel obstructions whereas I was vomiting stool, and, of course, at that time, it was time to go to the hospital for more surgery. My last major setback was in March 2002 when 3 inches of my colon was removed, the prior time 12 inches were removed. The doctors were unsure of my stability, they told my kids not to expect me out of surgery. Boy, did I fool them! It was a very bad recover, in the hospital for 2 months, so much internal infection that the “internist” did not know how to control, called in an infection control physician, a huge abdominal fistula in my stomach area. 5 pints of blood given me and a very long recovery. I even had to get transported to a “terciary” hospital for extended care. I was 2 weeks short of leaving work permanently, but again, pulled thru. After healing and going for a repeat office visit, for the first time in 18 years, my internist called my disease “Diverticulosis”. Ah ha ….. it finally had a name. I dealt with it accordingly, watched my intake of roughage and fiber. I could not understand that by the amounts of fiber and roughage I eat daily, why was this happening for so many years.
IT FINALLY HIT ME, BETTER LATE THEN NEVER Why would I ever think that this would be caused by my M.S.? Doc never led on that this could happen, so why should I? I am just a dumb patient waiting for suggestions and guidance.
For the past 2 years of taking increasing medications due to the MS, I suspected that were causing me to have difficult stools, not hard ones. I continued taking 2 digestive pills per meal, flax meal each morning with my cereal, an aphidophilous pill nightly and had to learn how to chew my food all over again. The doc said I could eat anything providing I chew it well so it will pass thru the digestive tract. It made sense, I was naïve. Since 2002, there never has been a time when I had seen a physician that the peristalsis in my colon was quiet and then noisy. My colon was never empty, rather always full and active. Peristalsis is the process whereby the food is carried through the digestive tract. Picture this ….tiny weeny little feetsies trying to pull and tug all the waste thru this hose (colon) and not having the strength to do so. Well friends …think of this in terms of the weak muscles in all parts of my body!!!!
Last Sunday, August 15, I had another difficult bowl movement. I do not have the patience of sitting on the toilet bowl. I need to get in and out and move along. Last week was different, I sat and sat and pushed and strained almost to the point of tears. The day ended and on Monday, I find a massive amount of blood in the toilet, it really scared me terrible. I went to the gastro doc in the afternoon. He immediately sent me to the internist and I was immediately was admitted to the hospital.
The prep begins…. YUK! Tuesday morning a colonoscopy….the prep work continues….an endoscopy on Wednesday. In the meantime I was administered 2 pints of blood….the prep work continues…..Thursday an upper GI series. I get discharged on Thursday afternoon with no diagnosis in sight. They are puzzled as to where the blood is coming from.
Friday morning I am on the phone with a friend explaining my hospital adventure. As I was talking a bolt of lightning struck my head. If all the muscles are affected by the MS and I know my uterine muscles are weakened, I need to take Detrol for urinary incontinence, then why can’t the muscles in my abdomen be affected too? For all the years I have been having this bowel condition (18 years or more), why couldn’t it been the MS weakening my internal muscles too that carry my food thru? The doc also told me that the food in my belly was not moving, winding up with obstructions, vomiting stool and needing surgery. This was not a secret! When I had a difficult bowel movement prior to the bleeding, I strained so very hard, with tears in my eyes, that I obviously blew a blood vessel in my stomach. IT MADE PERFECT SENSE TO ME. Since that time, no evidence of blood in stools.
So, all weekend, I sat patiently on the toilet bowl, no straining, no bleeding. All my test results came back negative and it had to be coming from somewhere between the esophagus and the lower bowel which could not been seen on scoping. I do remember picking up an article at an MS meeting about sluggish bowels, and never gave it one drop of thought until Friday, my docs said that I had obstructions and nothing else.
I write this for you to let you know that there are SOOOOO MANY FACTORS associated with Multiple Sclerosis, before you discard any thoughts or diagnosis’s study or ask questions. My MS was diagnosed just 2 years ago, the trouble with my colon has been ongoing since 1986. Boy, I could have saved a lot of hospital time if only I would have better what to look for. I guess that if you are a gastroenterologist or an internist, one does not think to look for the other signs.
I think, that if I had brought this issue to the neurologist, he might have been able to put some light on the subject of the bowels.
ASK QUESTION, DO NOT BE ASHAMED. FIND YOUR OWN ANSWERS IF THE DOCTOR CANNOT. I FEEL SO MORE CALM KNOWING WHAT IS “REALLY” GOING ON INSIDE OF ME AND NOT HAVING TO WAIT TO GET ANOTHER 2 OR 3 OR 4 PINTS OF BLOOD. “KNOW THY OWN BODY”, ask questions, do not stop until you get an answer. Use the internet, the library, the various foundations, get your own answers. Again, all we know about ourselves is what we know, up to our own experiences.
Hope this might help someone with some kind of physical condition you feel is questionable! |
