Adult-onset Hirschsprungs ????

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Fuzzy Bee
New Member

Date Joined Dec 2008
Total Posts : 4
   Posted 12/1/2008 6:34 PM (GMT -7)   
First of all, I am so glad that I found the healing well website.  It is inspiring to read your supportive posts.  I hope someone out there has answers for me too!
So I don't have IBS (this seemed like the most relevant forum though), but I do have severe chronic constipation.  I am a healthy 27 yr old female with the exception that I can't poo.  I am sick and tired of "helpful" people telling me that I need more fiber or to eliminate cheese or something.  I clearly have problems, we just don't have a complete diagnosis yet.
Anyway, I've tried Metamucil, Miralax and Amitiza and haven't had any success.  I had a colonoscopy in early Nov and that was normal except that there was still a lot of stool in the rectum.  Last week I did the Sitz Marker study.  It was supposed to be a 5-day study, but I am on day 8 now and still haven't gone.  It appears that I have normal transit because all the markers flowed on through to the rectum and then they just got stuck there.
Now my gastroenterologist told me today that he doesn't know what is wrong with me.  All he knows is that there is a problem with my rectum.  He mentioned trying botox in the rectum to relax the muscles, but he has never done the procedure before.  He is also thinking that maybe I have adult-onset Hirschsprungs disease.  I thought this only happened to children.  Has anyone heard of this?  I know I need to get a second opinion, but any advice is welcomed (well....except advice that recommends more fiber :-) )

Veteran Member

Date Joined Apr 2005
Total Posts : 3269
   Posted 12/2/2008 8:18 PM (GMT -7)   
Hi Fuzzy, Bee,
Welcome to HealingWell! :-)
You didn't mention if you tried good ol' fashioned prune juice or any type of enema. I'm sure you have, but I thought I'd check anyway, just in case. Do you get your recommended daily servings of water? How about plenty of daily exercise? Have you tried Yoga?
But yes, as you mentioned, you should definitely get a 2nd opinion.
I really hope you find some relief soon.
Co-Moderator IBS Forum
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Fuzzy Bee
New Member

Date Joined Dec 2008
Total Posts : 4
   Posted 12/2/2008 8:59 PM (GMT -7)   
Thanks 7Lil!
Yes, I've tried prune juice, Fleet saline enemas and soap suds enemas.  Prune juice does nothing.  While enemas are effective (most of the time), I don't want to have to depend on them to have a bowel movement.  I do use them about once a week though so that I don't get impacted.  I drink plenty of water and avoid caffeine and alcohol except on occasion.  I could probably use more cardio exercise in my life, but I am certainly not sedentary.  I love yoga and my instructor has me do poses and flows that are specfic to helping with constipation.
I'm in the process of making an appointment with a colon rectal surgeon for a consultation and then an Anorectal Manometry test.  I read about the procedure online.  Has anyone out there had this done?  Does it hurt?

Regular Member

Date Joined Jul 2008
Total Posts : 208
   Posted 12/3/2008 12:55 AM (GMT -7)   
hi, i was in a similar situation to you the sitz markers didnt move from very high up though, lasted for 3-4weeks. the doc then suggested a mil form adult hirschsprung to me, they done the manometry test it was fine, basically a balloon small one in the rectum and they inflate it to see if the anus can expel it properly mine took a few times before it started to work but because my blockages were high up they came to the conclusion that the large bowel just wasnt working effectively. Especially taking so long for things to move properly. the peristalsys in the large one was kind of just dying. They removed said unworkable bowel and after a year recovering i am great. i was 27 same age as you, and had this my full life. After the op the surgeons said the large bowel was bigger than what it should have been, so realy still no idea as to why it didnt work. Hope some of this may help, but reading your post was like listening to myself two years ago. good luck xx

extreme constipation from birth
fainting spells aged 15, then diagnosed I.B.S
anal fissures, haemorrhoids internal and external
mucous and bleeding
sigmoidoscopies, endoscpies, scans, x-rays, bloods
h-pylori aged 24-26
more tests, diagnosed severe slow transit, marker tests took 3-4 weeks to come away
large colon removed in 2007, aged 27( surgeon said removed 10ft) no colostomy
still in severe pain, awaiting dietician appt, now lots of food intoleraces
 so much better. now concentraing of food intolerances, odd bad day
meds- ibuprofen, fluoxetine, amitriptyline,and omeprazole 
now med free!!!
LOCATION- North east of scotland

Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 12/8/2008 7:24 AM (GMT -7)   

New Member

Date Joined Sep 2016
Total Posts : 2
   Posted 9/26/2016 9:37 AM (GMT -7)   
Hi I've just come across ur post via google and wondered if u had been tested for hershprungs?? My Dr thinks this is the problem I've got.
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