35 years of undiagnosed/misdiagnosis of constipation

[violetsyn]

Reading your post was like reading my life. I have been constipated since I was a little girl. I have been to many doctors and specialists with no hope of ever curing this disease. I have been diaganosed with IBS with chronic constipation. I have had a colonoscopy, an endoscopy, X-rays, tested for food allergies, removal of my appendix, removal of endometriosis, barium tests, small intestine series, blood tests, and motility tests. I have had huge enemas in an emergency room without any result. I have even went the holistic approach with more dissapointment. I have spent so much money on fiber supplements, laxatives, cleansing products and programs that I could probably have a new car. I have tried every diet for IBS and constipation. This disease has taken over my whole life, Everything revolves around this condition. All I do is research in books and online on what to do. I cannot drink any more water or exercise anymore than I do. I find that eating more fiber makes the situation even more unbearable. I too suffer from bloat, gas, heartburn, and roundness and extension of the belly. It does damper my socail life and my self-esteem. The only two things I have come up with on my own is taking alot of magnesium. Magnesium helps relax your whole body including your bowels. Colon hydrotherapy is the second. Without them, life is miserable.

[Unregistered]

I have only just stumbled across Hirschsprungs disease when looking for answers on something else. I was born constipated! They wouldn't let mum take me home from the hospital for an extra couple of days until I'd done what I was supposed to in my nappy! Unfortunately, she only remembered that particular fact when I was about 30! Meanwhile the doctors told her she'd eaten the wrong things when pregnant with me, or was stressed and passing that on to the baby - they don't know my mum! They also said maybe I wasn't trying. They tried to send me to a psychiatrist when I was two! Meanwhile I was given a disgusting laxative which I refused to take (and has since been taken off the market for being carcenogenic - phew!) and suppositories which gave me a phobia of rubber gloves for years (I can laugh now!). When I was 30 I started getting bouts of diaorrhea (never know how to spell that!) and was evetually diagnosed with IBS after a barium enema (which, according to the receptionist - not the doc!) revealed 'no tumours or lesions' (I can only hope that if it had revealed a tumour I would have been given an appointment with the doctor and not had that read out to all the patients in the waiting room!). So I've learned to live with 'IBS' - which is a joy compared to chronic and severe constipation as I never get that bad anymore - it's as though I get so far and then my body has a clear out. I dare say this is not particularly healthy either, but as I say it's better than before and I've learned to live with it - and the docs, too it would seem.

Recently I was diagnosed with a vitamin B12 deficiency after feeling ill and devleoping symptom after symptom which gradually worsened for about a year. I researched it on the net (as you do) and discovered that this can be caused by bowel disease. When I mentioned this to the docs they dismissed it as 'that's usually things like colitis or crohn's' - so apparently 40 years of bowel problems is nothing. I'm increasingly disillusioned with my GP practice - I kept telling them my B12 problems hadn't gone away and they tried to tell me my levels were normal (even, I've since discovered when they were at 150!) and I must therefore be depressed! I eventually started to feel better when my levels reached 350 - after 12 months on the tablets - so I've been suffering symptoms for two years now, and consequently (I believe) have permanent memory loss and other similar symptoms which are affecting my ability to do my job.

I am annoyed that no-one ever even thought to do any physical tests on me for my constipation - oh, did I tell you they took me out of my local pre-school and sent me (by ambulance) to a pre-school for kids with behavioural difficulties!?

I am now 42 years old with a big round tummy (my nickname throughout shcool was 'preggo') and this is the first time I've ever come across anything which could even possibly be a cause of my chronic constipation since birth - and could this now be the cause of the vitamin B12 deficiency which, if left untreated for another year could have lead to dementia (I was beginning to worry about that - I was forgetting what I was talking about mid-sentence)? Forgive me if I feel a little let down!

So what do you think? Is it worth my asking my GP about Hirschprung's after all these years? Or do I just accept that I have IBS and that the B12 deficiency is 'just one of those things' and keep taking the tablets?

Ruth

[Unregistered]

I have a 10 year old daughter that we suspected has Short Segment Hirschprung's since birth. Both of my children were breastfed the first 4 months; the older child had liquid stools that shot out, but I suspected something different with the 10 year old when she was born. She didn't pass stool right away when newborn, and she was colicky and fussy right away. When she did have a movement (maybe once or twice a week), they were also watery, but just oozed out. Nurses showed me how to do rectal stim which eventually would cause a movement and end her fussiness for awhile.

Several times as a toddler, she had to go to the ER with "blockages". A doctor prescribed Miralax in 2003 when it still had to be prescribed. We now get it over the counter and it has been helpful with a daily dose. She loves fruit and veggies, drinks lots of water and is very active so she does all the recommended things for a healthy gastrointestinal system. But if she misses the Miralax, she will develop a huge blockage that is extremely difficult to pass. I imagine the stool stops where the Hirschprung's Disease starts near the end of her colon.

Several years after my daughter was born, her cousin was born with full blown Hirschprung's Disease. I became much more knowledgeable about that subject. I have not yet had my daughter tested, but am watching her closely for now. Tests and treatments are being updated every day! I also suspect I may have Hirschprungs in a very short end segment myself, due to everything I have been through, and I have several family members that also have had similar problems. A few years ago, I had a PPH in outpatient surgery due to my messed up insides and find that I am doing much better. (That removed a small portion of tissue completely around the area the surgical instrument is used and resolved several problems I had).

I do believe many of us have undiagnosed Hirschprung's, even if only in a small portion of the lower intestine or colon.

Kim

[Prince_TX]

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.

.......


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.

Sorry to hear that. Hirschprungs is usually diagnosed at birth because the baby cant pass the first stool. You must have had a milder case of the disease. I'm assuming that you had a biopsy done of your colon which should the lack of neural tissue in the distal colon, leading to impaired colon muscle contraction. The biopsy is the only way to detect the disease.

Thats an incredible difficult diagnoses to make after childhood. How many people have chronic constipation or IBS?... there are many. How many babies have hirschprungs?... 1 in 5000. How many people have an adult undiagnosed hirschprungs that was mild enough to pass the first stool? ... probably not many.

So then what would we recommend doctors to do? Biopsy the colon of every person with chronic constipation? how many people would be subject to this unnecessary invasive test for a rare disease? how many people would be harmed? what are the risks and complications of biopsy to the colon?

I'm sorry you went through that. I wouldnt be too hard on doctors for missing that one. And someone mentioned other practitioners... I promise you that most chiropractors, NPs, PA's, accupunture, "herb healers", etc have NEVER even heard of hirschprung's disease. Only physicians, and I'm sorry they didnt catch your difficult diagnosis.

So the only treatment is removal of the portion of bowel which doesnt have the neurons to contract the segment of colon... have you done that yet?
Because that is the ONLY way to fix this. Pixie dust or herbs like some people are suggesting will not somehow make neural tissue appear in the affected colon.

[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!

What is oxypowder?

[KarenLL]

Thank you very much for sharing your story. Though I may not have this same condition, I have been suffering from severe constipation since September where only enema has allowed me to clear my bowels. I actually just started a new thread because I am confused about what my problem could be. The CT scan they did on one ER visit showed diverticulosis but the GI doctor who did my colonoscopy said I do not have that at all. The pain is absolutely unbearable and not only does the pain affect the GI tract but also the reproductive and urinary system. I am glad that you havefinally been diagnosed and hope that we all can experience that soon.