Defecography for LAR syndrome

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chrisca
Posts: 242
Joined: Wed Dec 07, 2011 10:35 pm
Location: Portland, Oregon

Defecography for LAR syndrome

Postby chrisca » Sun Jul 03, 2016 3:05 am

After dealing with LAR syndrome for five years, I have a new doc who is much more engaged. He ordered MRI defecography and it looks like it is providing some guidance. The report indicates inability to relax the puborectalis muscle and clustering from a lack of emptying the upper portion of the neorectum. So it's off for physical therapy to see if this can help.

If you have LAR syndrome, be forceful with your doctor and get this test done. It's not as bad as I thought it would be and there is no radiation when done with the MRI. I wish I had insisted on this exam four years ago. Without definitive findings, it's easy to waste time and money chasing after things that aren't the cause of the symptoms. I'll write an update when the therapy is complete.

Here is a link for various pelvic floor dysfunctions that has good information:
https://www.fascrs.org/patients/disease ... ed-version
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 10 years

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Defecography for LAR syndrome

Postby MissMolly » Sun Jul 03, 2016 9:16 am

Chrisa:
Horray for you . . for having the courage to demand better from your medical providers. You are blazing new territory and your insights will provide valuable information for others who face LAR syndrome and its demoralizing effects.

Having dysfunction of the lower digestive tract can be agonizingly isolating. Women with breast cancer can talk to their friends about the ravages of treatment. Men can discuss problems of the prostate with their cohort of friends. But there is a socially acceptable line that is crossed when discussing lingering effects of the lower digestive tract - rectum and anus. As a topic of conversation, it is socially unacceptable.

I remember clearly the morning that my father called to tell me that he was unable to have a bowel movement. And that he had not been able to have a bowel movement for several days. If his personal difficulties had been something "easier" to talk about between us, I have no doubt but that he would have brought attention to his cancer at an earlier point.

I am glad that the defecogram MRI was able to shine a light to the dysfunctional physics of the pelvic floor muscles and their interconnections underlying your LAR symptoms. I am a physical therapist by profession and have worked extensively with pelvic floor dysfunction. Working with a PT and biofeedback is definitely worth a good college try. If the PT and biofeedback training is not effective, an end-colostomy may be a better option for you in providing you with relief and the reclaiming of your life.

I hope that the physical therapy is successful for you,
- karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Defecography for LAR syndrome

Postby lauragb » Sun Jul 03, 2016 1:14 pm

Chrisca, maybe I've mentioned this before but looking at your signature I am amazed by the similarities of our stories. Here's mine, a little different but still..false neg colonoscopy, age 48, rectal cancer diagnosis, age 53, large tumor 2 cm from anal verge, stage 3B, same treatment, and then the surgery for adhesions in 2013 (mine was open, though).

I did do the pelvic floor PT, it didn't improve bowel function for me but it did help with pain. It is worth a try and I have heard of some success stories so hopefully you will fall in that category. It seems those of us who had the low tumors with total rectum removal have the most challenges with bowel functioning. I ended up becoming an enema user, not everyone's cup of tea but works for me.

Good luck on your therapy, hope to read of good results!
Laura
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Defecography for LAR syndrome

Postby Jachut » Sun Jul 03, 2016 4:00 pm

Totally agree. If there's on element of my treatment that I find hard to let go, put behind me etc, its the way I was made to wait two and a half years for this test.

I didnt have typical LAR syndrome, quite the opposite. I was almost completely obstructed and had to use enemas, laxatives an various acrobatic moves to empty my bowel. Oh, the things I tried in the privacy of my bathroom! I suffered huge anxiety that I would need to go somewhere out in public, like at work and be stuck in the bathroom, I was anxious to even be away sharing a house with family because I knew I would need to disappear for an hour or more. I could hold it three or four days but after that I had to do something about it. It was miserable.

I really think my surgeon just did not believe me, thought I was exaggerating, and that I just needed time to get used to my new normal. He made me try a low fodmap diet (did help for some of the general post surgical intestinal dysfunction), pelvic physiotherapy (she could find nothing abnormal) and then just shrugged his shoulders and said "see me again in six months". I would want to howl in frustration - six months is a long time to be putting up with such misery. Eventually I lost it and insisted that I have the test. And straight away the problem was diagnosed. The surprise and shock in his voice when he said "you've got a prolapse" was when I realised that he had thought I was just whining all along and I don't know how I didnt jump the desk and punch him.

After that he was great though, its like he suddenly realised how much I'd put up with. He explained to me that he couldnt surgically fix it, it would be too hard after radiation but he did have a colleague who might be able to fix it vaginally. I didnt even think about that one, I'd had enough and I was NOT going to let someone else open me up again, particularly vaginally so I'd said "no" before he even finished the sentence and he didnt argue with me, thank goodness. We just booked the colostomy surgery for a few weeks later.

If I'd had that test earlier (I feel I needed it about 9 months after reversal which is when things went awry) I could have saved two long long years of anxiety, depression and discomfort.


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