35 years of undiagnosed/misdiagnosis of constipation

[Pauletteaz2]

I have a story to tell. I am mad about having to go through 35 years of ****, 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.

Symptoms:

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.

[Unregistered]

sorry u had to go through all that. I have been suffering lately with constipation so I sympathize. I believe my problem is rel God bless.ated to thyroid/adrenal insufficiency. I have gone through colonic irrigation and liver flush...
It's wonderful that you posted this to help others. People have such a hard time coping with these illnesses and Drs pretend to know what they are doing but -- do they really know?
I hope you will stay well!
God bless

[Pauletteaz2]

sorry u had to go through all that. I have been suffering lately with constipation so I sympathize. I believe my problem is rel God bless.ated to thyroid/adrenal insufficiency. I have gone through colonic irrigation and liver flush...
It's wonderful that you posted this to help others. People have such a hard time coping with these illnesses and Drs pretend to know what they are doing but -- do they really know?
I hope you will stay well!
God bless

Thanks for your support. I do have low thyroid but supplements have not affected this.

[lovecolors]

Hi,

I have been suffering from constipation since young. Especially when your colon is in a state of being very constipated with tons of feces, it might be hard for you to 'push thru' and probably the nerves arent able to detect well. My condition is slowly improving after trial and errors. I was very very constipated till I had to use an enema daily or relied on doctors' laxatives too. kept trying to find a cure but couldn't for years!! Doctors just said take more fruits, drink more water when I was doing that..yes...but the wrong way...till it made me more constipated.And yes, it's so irritating! Don't give up...keep on trying to "clear" cause once most of the junk is out, you'll feel more energized!

Be patient. Sometimes you might still feel your instestines are like twisted...not sure if my suggestions help but hope they do!=)

Have you seen a specialist to help you with bowel obstruction?
when you mentioned tightness, do you have hemmoroids..probably internal hemmoroids? It can cause obstruction.

How is your diet usually like? fried, oily,or very tasty stuff?

maybe you can try taking just simple meal- rice, boiled/stir-fried veggies, steamed fish/stewed/stir-fried chicken for like a mth...or simply something lighter! Try to cut out ice-cream,cheese, junk food,additives, instant food..basically anything that's of the "tasty" category.

1.Try vegetable juicing by yourself in the morning as often as you can..raw veggies like cucumber,carrot n celery
2.OR take high-fibre fruits like papaya or grapefruit(cant be taken often as might be lethal) as breakfast / before you sleep. So that the fibre can "digest well" and move thru which helps you to clear the next morning.
3. Try jogging or swimming...it moves your bowels.

What I've found out is not to take any meals after fibre as it might get stucked? and best to take on empty stomach. If you want, take fibre after your meals but wait 2-3 hours for your food to be completely digested first. Fruits digest slower.

I will try to 'force down" as much water as I can...not all at once but in large sips like coffee.=D Lots of water will help as fibre absorbs the water and it shouldn't be so hard to push anymore.=) Personally for me I drink more than 8 glasses of water a day...actually 8 glasses is difficult to 'poo' for pple like us.

If you're very constipated now, try taking a little fibre and more water at a time.

For me I will be able to 'go' after a few hours taking all these and take my lunch after that.


You might like to try colon cleansing...if you're interested, google up on colonix by drnatura /oxypowder.
Have you tried taking pysllium?

[Pauletteaz2]

Thanks for all your advice, however, I spent the last 35 years, trying everything. I am of normal weight, I was a runner, I exercise with weights, eat very well, salads, chicken, fish, vegetables, fruits, eggs and goat milk, because I am allergic to wheat products and cows milk products.

I don't have peristaltic movement in a part of my bowel. It is permanently constricted. This is caused by a lack of ganglion cells.

I cut out all caffein for 10 years, took psillium, herbs, tried every fibre product, tried every kind of diet, food combining, went to nutritionists, etc.

Nothing helped. I am sure now it is not lack of exercise or what I do, or what I eat, or take into my body, or what I think, or who I sleep with. I'm sure that I have an inherited condition. From all that I have read and researched, I think I have adult hirschsprungs disease. I have compared my symtoms to all other bowel diseases and HD is the one that all my symptoms align with. I had an abnormal manometry, abnormal sitz marker test, but normal barium enema. I am going thru another barium test, and then a full thickness biopsy.

I am so sorry I get angry at the whole medical profession. We have many good professionals. However, the doctors I have seen don't listen to my symptoms, and in fact, tell me my symptoms can't be right. It makes me mad to be invalidated for what I am feeling. Those are my feelings!!!

[Unregistered]

I would like to suggest you to switch specialists until you find one who really bothers enough to listens. It's not easy but it takes patience. I'm sorry to hear about your condition and I understand the frustrations when SO MANY doctors don't listen!! Don't give up! I know some doctors are too clueless and just dismiss your case.

When we have 1 life to live, why not live it happy? I know sickness brings us down but we should beat it!=D

Maybe you should really give oxypowder a try..I read that it gives off watery stools but not dirrea...since you don't have hemmoroids, it might just work.

Did you happen to try accupuncture or chinese medicine?
I will pray for you, take care!

[sxrxrnr]

I have a story to tell. I am mad about having to go through 35 years of ****, 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.

Symptoms:

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.

The elephant in the room on the out of control medical costs is exactly your experience. Often a patient with a disorder must see many so called medical Doctors who proscribe numerous expensive tests and incorrect therapies to no success. Of course each Doctor or procedure includes a bill that must be paid by either the patient or an insurance company and the medical professional happily deposits the check and goes on to incorrectly diagnose the next patient. This of course adds billions of dollars to health care costs as their are no money back guarantees in health care as there is with many other services. There are 10's of thousands of poorly trained or merely ignorant practitioneers who hang a shingle and are the at the root of this. This of course why many other cottage industries such as chiropractic, acupuncture, so called health food stores and other such alternative medical practices thrive as our so called medical profession is doing a rather lousy job. We all have been victims of this, indeed even those who are in the profession as they or their family members will too suffer as the rest of us do. Do I sound cynical? Well as some wise sage once said that his definition of paranoia was: "An enlightened sense of awareness". Yes, I too have been there, done that, far to many times in my life when dealing with the so called best medical professionals in the world.

[Lori6608]

My nephew has been severley constipated since birth. He is now 6 the doctors have said it was normal. He would go 4 5 days w/out a bowel movement. When he would finally go it was god awful pain. It was like the size of a baseball. They did all the fiber, laxitives, stool softners
hirshrum disease was metioned and it sounded exactly like what was going on with him. I believe they ran some test on him and ruled it out. So now the poor little guy takes his softner and other meds religously. They make it sound like its in his head. But come on a newborn baby dosent know how to play these kind of games. I wish they would figure it out. Oh yeah one time it was so big and hard you could feel it through his belly pretty sad. I hate when doctors just cant admitt that they just dont know

[Unregistered]

I am a 65 year old male and have had chronic constipation (hard, dry stool) since birth. With the use of Barium Enema (in the hospital), I was diagnosed at about 12 years of age with Congenital Megacolon and was told this was the cause. I was told what foods to avoid (cheese) and sent home. Years later, after being hospitalized with a severe case of constipation, I met a new physician who suggested I increase fiber (Metamucil) and increase my water intake. After many years, I switched to Psyllium. Nothing seemed to help -enemas were my only real relief. A few years ago, I finally had a colonoscopy (my Mother died of colon cancer @ 64) and was told I had a Redundant Colon. I had a prescription for the bowel prep (don't remember the name but it sounds like anti-freeze) they use for colonoscopy & that worked great by drawing water to the stool to make it soft. Two years ago I was introduced to a wonderful clinical nutritionist with an MS & CNS, who had 25 years experience. She suggested a buffered ascorbate powder (Perque) that, when used as directed (Ascorbate (Vitamin C) Calibration Protocol ("C Flush")), has a better result than the prescription. Since then I have had the best, daily, regular bowel movement anybody could have - the type Dr. Oz says we should have. I still am not sure what malfunction actually causes the problem, but I'm constantly looking for an answer.
I hope my story has helped and not confused you.
God Bless & be well.

[Unregistered]

hi,
im 23 and just had my lrg bowel removed a few months ago. i was in pretty much exactly the same situation as you. pain, no life, almost dying, frustrated at doctors who wouldnt take a second glance at me. the great doctor i did run into finally could tell me what the culprut most likely was: colonic inersuia, and when opened it that was exactly the case. unfortunatley she said it is fairly new in medicine and cannot be easily disgnosed or found out through any formal testing. mainly the doctor needs to be educated about the "disease" i guess and diagnose it through your symptoms but most importantly nthrough your medical record. ive had problems since a very young age and eventually my colon shut down completly. going from one to three months without ANY bowel movement, not even liquid, and i imagine it would have gone on as long as allowed or humanly possible. it is frusturating as the ER drs did the same treatement all the time or wouldnt give me any new recommendations, much of which was extremly painful and unhelpful. especially when you know your body best. my dr was appalled at past treatment , but im glad i didnt give up and stop going to hospitals after being told basically i wasnt sick and was doing it to myself by some doctors. well my surgery has workedmiracles for me and has made THE difference in life for me. a lot of people are initally scared of going under the knife but u have to consider what your already going through, it got to the point where i literally couldt eliminate on my own after a time with mulitple forms of laxatives and pretty much all avaliable procedures and forms of "bowel therapy". for about 8 months or so i had to be taken into the OR every 2 to 3 months so my bowel did not perforate, and when removed it was found to be completly dead and about ten times the size it was suppossed to be. even though i didnt have many options left but surgery finding the right doctor is key and everyone should have a definite say in what goes on in their treatment, your the one who has to follow through with it! by the way my doctor also mentioned that so far they are finding the highest statistic of people being diagnosed with colonic inersia are females in their twenties, which was my case.