Chop tomorrow… update

Here is the quick update on addyson. Monday her Gi suggested we think about other options to control her bowel issues. Her mri showed an outlet disorder. Gi at Hopkins is saying keep trying biofeedback for who knows how long (and who knows if it will work) or consider a colostomy. We were not prepared for that suggestion and are not making any decisions without a lot of research. We are going to chop and Boston to get all of our info before deciding.

What we do know is that even with flushing each X-ray shows more of an issue.

She is now having chest pain due to the pressure (you can see it on the X-ray).

Her rectum is only emptying at 25%. This is why she can sit and sit yet still feel like she needs to get more out.

Her Gi is suggesting we meet t with others to see if they have a better plan.

He says it will give her improvement and her stomach won’t be so dilated and we can get pressure off her chest.

Kids do get colostomies and can even have them reversed.

Motility disorders are not spoke about enough so many people just don’t understand it.

Below is some info on nerve stimulation. I plan to ask about this.

Sacral Nerve Stimulation:

Neuro-electrical stimulating devices, similar to what is used for gastric electrical stimulation (Enterra^® Therapy), now offer hope for correcting problems connected with constipation. Sacral nerve stimulation is fully approved by the FDA and has been used for a number of years in the treatment of fecal incontinence and urinary/voiding disorders.

At the end of your spinal cord, a number of important nerves cross through your tailbone (sacrum), reaching out to your bladder, pelvic floor and rectum. By stimulating the main branch of the sacral nerves with weak electrical impulses, beneficial effects reach downstream.

The idea of treating slow-transit constipation (a slow motility disorder of the colon, sometimes found in association with gastroparesis) with the application of sacral nerve stimulation was stumbled upon by investigators studying the use of the device for bladder problems. Now a number of published studies have demonstrated the usefulness of sacral nerve stimulation for slow transit constipation.

Some centers are using temporary sacral nerve stimulation to help select their candidates for permanent surgical implantation. In small studies the device has been shown to be effective for long standing problems of constipation, which had previously been unresponsive to any medical interventions.

Transcutaneous Electrical Stimulation (TENS) with Interferential Current (TESIC) for the treatment of slow transit constipation.

Investigators at the Murdoch Children’s Research Institute, in Melbourne, Australia, have been working with children who suffer from slow transit constipation. A small study by Janet Chase, et al, published in the Journal of Gastroenterology and Hepatology (2005) found good results for improving spontaneous bowel movements in previously intractably constipated children using an interferential current with skin electrodes.

Sending weak electrical currents, via electro-pads, across the skin (transcutaneous) for the stimulation of tissues — has been in use for years. These methods are used for the treatment of: chronic pain, wound healing and sports injuries.

An interferential current has the ability to stimulate deeper tissue layers. Using two different electrical frequencies, slightly out of sync; once these frequencies cross over in the tissue it changes the overall amplitude of the current.

For treating constipation, these investigators used four electro-pads; two in front over the abdomen and two in back by the spine. Three treatment sessions a week were performed for 20-30 minute sessions. In the study group, nearly all the children showed very good results, with many of the children able to move their bowels spontaneously.

Since there are no side-effects or risk associated with TESIC, this may be a very useful alternative for some patients.

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Colostomy with Rectum

People with colostomies who have ostomies of the sigmoid colon or descending colon

may have the option of irrigation, which allows for the person to not wear a pouch, but rather just a gauze cap over the stoma, and to schedule irrigation for times that are convenient. To irrigate, a catheter is placed inside the stoma, and flushed with water, which allows the feces to come out of the body into an irrigation sleeve. Most colostomates irrigate once a day or every other day, though this depends on the person, their food intake, and their health.

http://www.digestivedistress.com/constipation-surgery

https://www.chw.org/medical-care/sacral-neuromodulation

https://www.mottchildren.org/conditions-treatments/colorectal-disorders/treatments/sacral-nerve-simulation

http://www.med.umich.edu/1libr/PedSurgery/ColorectalProgram/SNS-ProcedureInfo.pdf