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Defecogram Doesn't Look Good
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An_250997 posted:
I had a defecogram (fluoroscopy) done today, and while it was not one of the most fun things I've ever done, it wasn't as bad as I had feared. I have never been pregnant, and at nearly 29 years old, I am probably one of the youngest patients to undergo this test. I had hoped that the results would be normal or only mildly abnormal.

From what I could tell, not so.

Here are the findings that I observed (and that the PA mentioned to me):
  1. Rectocele - moderately large
  2. Colon/rectum not contracting at all to enable defecation
  3. small bowel resting on the colon (not sure what that implies)
  4. uterine descent posteriorally which actually completely obstructs the rectum when I'm straining.
  5. It took 2.5 hours for the oral barium solution to make it through my small intestine... that's more than twice as long as it should have taken, indicating I likely have a motility issue that is not confined to my large intestine.
  6. Copious retained barium... like most of it... that I just could NOT get out.
Who knows what else it showed that I did not notice or that the PA did not mention to me. Near the end of the study, the PA asked who the referring doc was, and said that he would be intrigued to find out what happens next.

Yeah, me too, dude. Me too.

I can't fathom how one could possibly repair all of my issues. Surgery can fix some anatomic defects, but it won't make my colon/rectum do its job (which is to contract normally). The treatment for that? Having your colon removed.

For the first time in a while I am truly scared about my health. It would take extensive surgery to repair all of my pelvic floor defects. I can't imagine having my colon removed. And by the way, I would like to be able to have children someday, and I'm sure pregnancy would still destroy whatever repairs are done even if I deliver by c-section instead of vaginally.

I know I need to talk to the colorectal doc about this, but I also know it could be a few days before he gets the results. In the meantime, I'm trying to avoid being overly anxious... and I'm failing miserably.

Has anyone around here been through anything similar? Can you offer any advice or support?

Thanks.
Reply
 
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Justhealthier responded:
I can relate - had the same test a few years ago -that was in 2010 before my surgery, I had all but 10" of my colon removed - small bowel was reattached to remaining colon. Had to have a rectocele repair as for the autonomic stuff going on in me and you there isn't much they can do for that. I also have pan colonic hypo-motility.

I have been fine until last Nov. 2012 when my motility issues began again - went through every test - my GI doc said go get a 2nd opinion I don't know what is wrong.

Had a 2nd opinion done a few weeks ago - he did a barium small bowel follow through yours took 2.5hrs to go through, mine was 6hrs and still it wasn't to my colon. The doctor stopped the test saying he had enough info to pass along.

I was diagnosed with Pseudo intestinal obstruction of the small bowel, an obstruction at the junction where the small bowel and colon were sewed together, rectal prolapse and another rectocele.

I will be having a colonoscopy with a balloon on the 9th of April to try to open the junction to allow things to pass properly. We don't know if it will work - if not I'll have to see my colon surgery again.
 
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An_250997 replied to Justhealthier's response:
Justhealthier,

I'm sorry to hear about the pain and trouble you are having. May I ask, have you had children? Are you older? I wonder because I am only 28 and have never been pregnant. It just seems odd that this would be happening to me so young.

I got the official defecogram report today:

IMPRESSION: Hypomotility of the rectum with an associated moderate-sized rectocele as well as enterocele. The combined process results in mechanical obstruction of the distal rectum limiting rectal evacuation.

Other jewels in the report:
  • During defecation there is inadequate decompression and evacuation of barium from the rectum due to the proximal rectum collapsing on itself just posterior to the large to moderate sized, approximately 3x3 cm rectocele, just inferior to the patient's vagina.
  • No visualized distal colonic motility was noted, consistent with colonic dysmotility.
There was no mention of uterine prolapse, but they weren't really looking for that. I'm sure it is happening, too.

Call me a pessimist, but I don't think any pessary or any amount of pelvic physical therapy could ever fix my problems. It sounds like I need surgery.

I had the anorectal manometry done today, but it will probably be a week or more before I hear anything back on that.

The suspense is making me crazy. I need to know what happens next so that I can plan my life...
 
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Justhealthier replied to An_250997's response:
Hi - yes I have 2 live children, lost 2 to being stillborn and I had a pregnancy that was tubular which contained a twin in each tube. That pregnancy had to be terminated. At the age of 28 I had to have a hysterectomy. I am now in my 50's.

As for you there should be no reason why you can't have children with what is going on I had all my problems while being pg. As soon as I delivered my children my rectoceles were repaired.

Depending on your insurance they might have you do the physical therapy first to see if it will work before doing any surgery. I had 8 weeks or 8 treatments with no luck, then they went forward with my surgery.

My bladder has hypo motility issues as well - autonomic dysfunction - and I had a stimulator placed in my body to control my bladder, but when the battery died after 7yrs of use I no longer could feel the stimulation - they had to remove it - only to find out for the whole 7yrs it was also helping my colon. For those 7yrs I went everyday like nothing was wrong. No one knew at the time the stimulation also works with the motility of the colon.

They are now using the stimulator for people like us to help in the stimulation process to get the stool to pass - perhaps after the fix the rectocele you could be a candidate for the stimulator.

Keep me posted on your situation and how you move forward. Julie
 
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An_250997 replied to Justhealthier's response:
It's not the rectocele I'm worried about. The reason I fear that I may not be able to carry a pregnancy is that right now, without any extra weight in the abdomen, my rectum/colon keeps getting obstructed (squished and collapsed), and then I become impacted. I think the last thing I need is more weight and volume in the abdomen to aid in that process. I can imagine that if I were to become pregnant, my rectum/colon would become chronically obstructed from the increased pressure, and I would be unable to move my bowels at all. Not good.

I saw the PT yesterday. She says that my muscles down there are really tight. Biofeedback shows the resting tone is about 2x normal. However, I came away just not quite understanding how loosening my pelvic floor is going to fix my problems (which seem to be caused by the obstructive and motility issues). I think I want to talk to my doctors again before I continue seeing the PT (who charges $75/visit).

I'm on a fiber/miralax regimen which seems to be keeping things moving ok, and I'm hoping to avoid having my colon removed, if at all possible.

I am tired of waiting for answers and further instruction, but I suppose I don't really have a choice. Very frustrating.
 
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Justhealthier replied to An_250997's response:
Sorry I have not replied before now - not been myself lately.

I had to have a colonoscopy with a balloon done today. I had to do 2 days of colon prep to be cleaned out enough - and I was not- but he went ahead.

Minimal stretching in the stricture was done, but was diagnosed with pseudo intestinal obstruction. Basically my small intestines do not work. I do have a bacterial over-growth for which I have to take antibiotics to clear it up. Also I have to change my diet - no Metamucil or Psyllium capsules, no wheat products. Low Carbs.

You might want to ask your doctor about pseudo intestinal obstruction. Keep me posted as to how you are. Julie.

Here is a good web site for you:

http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/


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