? What Treatment Options For Bowel Dysmotility

[anna]

Hello All,

I have a question for any of you who have bowel dysmotility and EDS, how has it been treated??

A young person on another site has just been told this:

Test results show that I have no muscle tone, severe nerve damage and no pressure in my bowel.

He has given me two options to consider:

1. End ileostomy

2. Peristeen Anal irrigation - for a trial of 3 months

Any ideas on possible alternative to this? the surgergen is not at all interested in the fact that this person has EDS by the way!

[juliegee]

Hello All,

I have a question for any of you who have bowel dysmotility and EDS, how has it been treated??

A young person on another site has just been told this:

Test results show that I have no muscle tone, severe nerve damage and no pressure in my bowel.

He has given me two options to consider:

1. End ileostomy

2. Peristeen Anal irrigation - for a trial of 3 months

Any ideas on possible alternative to this? the surgergen is not at all interested in the fact that this person has EDS by the way!

Hi Anna-

Hmmm. I have some questions. Was this DX given via a manometry or a biopsy of the bowel? Before making anatomical changes (Ileostomy); I would certainly insist that both tests were performed. Most that have bowel dysmotility (secondary to dysautonomia) show NERVE damage as opposed to MUSCLE damage. I notice that this young person has both. Muscle damage can be caused by an inflammatory or degenerative process. I would guess that it's important to understand WHICH etiology is behind the symptoms before treating it. Of the two options; a trial of anal irrigation is definitely the 1st step.

Many successfully treat dysmotility with GI prokinetics, like eyrthromycin or domperidone, diet changes (low fiber, low fat), miralax, probiotics, etc. When these measures fail, malnutrition, nausea, vomiting, and fecal impaction can occur. It's important that the patient see a specialized GI, called a motility specialist to figure out what other treatment options would be. There are very few pediatric GI motility specialists in the US. We found a wonderful doctor at Johns Hopkins: Dr. Anil Darbari. He is wonderful about connecting this to dysautonomia/EDS and treating EVERYTHING.

The doctor making the DX wouldn't be a surgeon. Regardless, it's extremely important that both the GI motility specialist and the surgeon take the time to learn about EDS. Understanding that DX, will certainly impact the treatment plan and make for a safer, more successful surgery if that is found to be necessary.

My son deal with this. Unfortunately, I've had to learn a lot about it. I would be happy to E-Mail directly with this young person and his/her family. PM me if you'd like my E-mail address. What a wonderful friend you are to help, Anna.

Take Care-

Julie

[anna]

Dear Julie,

Thank you so much for your post I will pass it on. Sorry that your poor son has to deal with such things too.

Anna