I usually leave these posts to Sarah but she will never write about this (she is to modest) so I am going to share and embarrass her some. 

My lovely wife who puts ALL of her time into keeping Nora healthy and thriving and also finds the time to help others in need was nominated by our home health care company, Barnes, for the Lyn Howard Advocacy Award.

Here is the email they sent her….

“We received this email below and immediately thought of you.  We would like to nominate you for this award.  You have been so instrumental in sharing with us and helping us to better help our patients as well as being such an advocate to others through your blog and website information. Please click on the link below, and read more about it.  I won’t proceed without your approval, so please let me know what you think……

Lyn Howard Advocacy Award Nominations Being Accepted

It’s time to nominate a consumer, caregiver or a family member for The Lyn Howard Nutrition Support Consumer Advocacy Award. This award, named in honor of A.S.P.E.N. member and Oley Foundation co-founder, Lyn Howard, MB, FRCP, acknowledges one patient/family member/caregiver who has advocated for other patients, families or caregivers of consumers who require parenteral (PN) or enteral nutrition (EN). Advocacy efforts include such activities as lobbying for legislation to improve care or reimbursement, developing educational tools, fundraising for PN or EN research, starting or sustaining support groups, being a consumer advocate, or teaching others about PN or EN. Nominations are due by October 15, 2010. Visit the A.S.P.E.N. website for more information.”

In all honesty I think we both feel there are other people more deserving of the award, that do much more for the overall PN/EN community, but I think that the nomination in itself shows what a great job Sarah does as a mom and caregiver to Nora, as well as a shoulder of support and provider of information to others in need. She is a special woman and I am glad to see her recognized for her good heart.  Congratulations honey, you deserve it!

Nora had her endoscopy and colonoscopy last week and it was found that the culprit of her pain and bloody stools is bacterial overgrowth in her large intestine. Maybe I should rephrase that, the more specific cause of her severe symptoms is the intestinal dilation and lack of motility which was caused by bacterial overgrowth. Bacterial overgrowth is usually referred to as SBBO for “small bowel bacterial overgrowth” because it is more commonly a problem in the small intestine but it does occur in the colon and that is where Nora’s is. This is new news to us so we are still learning.

Bacterial overgrowth is a very common problem with SBS where the good bacteria in the intestine needed for healthy digestion are over taken by bad bacteria. The overgrowth causes fermentation of food in the bowels which leads to dilation from the fermentation process and the dilation leads to poor motility or “floppy colon” as Dr. Dimmitt referred to it. Then irritation and bleeding are caused by the poor motility and the bowels not being able to eliminate all of the fermenting stool.

Thankfully Nora’s small intestine looked really good and healthy with no overgrowth or dilation. We were so relieved to hear that because since her small intestine was the part that was resected her doctors were thinking that her problems were coming from the resection sites.

Although overgrowth is a common SBS problem we were a bit surprised by the diagnosis because Nora didn’t have any of the typical symptoms of overgrowth: diarrhea, vomiting, decreased appetite, excess gas. Maybe because her overgrowth is in the colon the symptoms differ(?).  Without these symptoms as a red flag, it appears that the overgrowth has been brewing for a while by the amount of dilation and irritation. I am feeling quite guilty for backing off on Nora’s pro-biotics in the last 6 months or so and can’t help but feel it contributed to the problem. Nora’s been on pro-biotics pretty much since the beginning but I started backing off and only was giving them to her every now and then because it seemed they were making her stools looser. Since I backed off the pro-biotics her stools thickened up and we thought she was doing great.

The typical treatment for overgrowth is antibiotics which wipes out all of the intestinal bacteria, the good and bad. Nora’s GI docs usually treat with anti-biotics first and then re-establish the good bacteria with pro-biotics. Since Nora has always gotten colitis from anti-biotics we’re trying a double dose of pro-biotics first and if that doesn’t take care of it then we will go the anti-biotics route. Diet is also a big part of getting overgrowth under control. The bad bacteria feed on sugars and starches so we will continue keeping Nora on an even more restricted diet than usual.

After feeling pretty puny for a couple of days after her procedures, thankfully Nora now seems to be feeling much better even than before her procedure. Even though the clean out was unpleasant and hard on Nora, it seems having her system completely cleaned out was a really good thing for her. Getting all of that festering, rotting stool out of there really did her some good. (sorry for the gross adjectives but it is what it is). Now hopefully we can just get the overgrowth under control before the poor motility allows it to build back up.

Pfffft to you bad bacterias!

Now for the good news….Nora’s small intestine has now grown to 25cm!!! She started off with only 4.5cm, it had grown to 16cm last spring and now she’s at 25cm – aww yeah baby!