I have a story to tell. I am mad about having to go through 35 years of ***l, pain, near death, and shame. I am sad for all the life I missed out on, dropping out of college, loss of jobs, 2 failed marriages, because of my problem.
But I am also very happy that I have a handle on my problem. I dagnosed myself. I know doctors don't like to hear this. I have and continue to research this subject. The frustrating part is how the information on my problem in the medical community is not distributed. There may currently be research going on and there is available information on Hirschsprungs, but it doesn't appear synthesized in a way to make it usable, available, and applicable. There is also a well guarded and reinforced mindset that adults don't have it, that it is a disease that only babies have.
In all the years I have sought an answer, no doctor, specialist, or medical personnel ever mentioned Hirschsprungs, ever ran a manometry, ever did a stiz marker test, a full thickness biospy or any other test which would have shown I have a serious life threatening problem. I have been to doctors and specialists in San Diego, Boston, Norfolk, and Phoenix, all places I have lived. I've been to nutritionists, psychotherapists, counceling, chiropractors, IBS groups, Research groups and more. No one addressed my serious complaints.
Undiagnosed Hirschsprungs has an 80% mortality rate.
At this moment, there are probably thousands of adults suffering with Hirschsprungs and don't have a diagnosis.
Even when I was admitted to the hospital because of severe distended bowel after 6 days of no passing of stools, I couldn't pass the enema water either, let alone the feces. I could have died of perforated bowel or enterocolitis.
I was never given a decompression.
The only advice I ever received from doctors and specialists were, eat more fiber, take these laxatives, and "I don't know".
The only tests I was ever given were colonoscopy, and barium enema. These all came up negative. So the doctors said there was nothing wrong with me. In my research, these tests do not show Hirschsprungs.
I have had severe constipation/ bowel obstruction for 35 years. I started having problems at about 18 yrs old, and took laxatives for the first 6 years or so. But they left me feeling drained and weak and eventually I switched to enemas. Those worked for well many years, until about 10 years ago, it became increasingly difficult to expell the water and feces. I now takes me about 3 to 8 hours to get the "permanently contracted" portion of my bowel to "unwind" which I do with warm water.
Chronic long term constipation that affects activities, work, relatioships, and health.
Progressive disease ; laxatives fail to work after years, then enemas start failing to work well, in that even water gets stuck in the bowel.
Feces always stop at the same point in the bowel
Pain and distention at the "point of collection" where the bowel continues to try to expell the feces but can't because of the obstruction
When feces continue to collect, the bowel widens and stretches from
days, weeks, or months of unexpelled feces. I was in the Navy in boot camp for 8 weeks. I had two bowel clean outs during that time, when I was sent to the hospital.
After days of fece collection, pain sets in, then numbness, as the bowel looses circulation; after enema, circulation is regained, causing throbbing, and soreness in area of obstruction
Tightness in area of bowel that obstructs. It is always tight, sometimes feels like it is twisted, or contorted. Sometimes it feels like the blood is being sweezed out of the bowel, loss of circulation.
This tightness in the area where feces stop, is always there, every hour every day.
This tightening gets worse as the years go by. Anus area ia also chronically affected by tightening of the muscles there.
Gas cannot be expelled most of the time, which causes pain.
Damage to colon because of years of feces, stretching, etc. can cause problems w absorbtion of food and nutrients. I developed food allergies a few years after my constipation started.
I want to hear from other adults who have had problems w constipation and obstructed bowel who do not have a good diagnosis. I also want to hear from any adults w Hirschsprungs.
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