Friday, May 28, 2010

Short Bowel Hydration Hints

I am posting information about a Webinar that ThriveRx is hosting next Friday, June 4th at noon. I just saw a trial run of the talk and it was fantastic. I really wish I had seen it about 3 years ago. The talk is free and open to anyone. It centers on oral hydration tips but it would work for those without short bowel as well.

“Hydration Hints for the

Short Bowel Consumer”

Presented by Maria Karimbakas, RD

June 4th at 12 noon

Topics to be discussed:

v Causes of Dehydration

v Signs and Symptoms of Dehydration

v Treatment Options

v Preventing De-Hydration

v Review of Oral Re-hydration Solutions

Maria Karimbakas is a registered dietitian. She has worked at Brigham and Women’s Hospital in Boston, Nutritional Restart Center in Hopkinton, MA, and currently she works as a consultant for ThriveRx. Maria has co-authored several abstracts and papers on the subject of diet and SBS.

You may access this program by phone only or via the web.

To register for this event please email Abby Brogan at

2 Hours 20 min

Another record for Ellie. Fastest UGI since she was reconnected. Very good news. They saw a bit of dilation but not blockages or narrowings. We were very happy and said, "ok what IS wrong then?" We are brainstorming and trying to come up with some ideas. This is the part of Short Gut I don't love, the guessing part. Since no two short gut kids are the same, you just have to try everything until you find something that works. UGH.

Thursday, May 27, 2010


Yes, that means Upper GI study. About a month ago Ellie started having all her normal signs of overgrowth.
  1. Stinky poops and gas
  2. Increased gas
  3. Decreased hunger drive
  4. Yellow colored very loose stool.
  5. Vomiting in the late afternoon/before dinner.
So we called CHB and got her on a week of Flagyl. No change. Maybe we targeted the wrong bug. Start one week of Cipro. No big change but a bit better. Ellie's nurse comes down the stomach bug and Ellie starts vomiting more frequently. We chalk it up to the bug and wait it out. Last week we finally called CHB, squeezed in to a last minute clinic appointment. She lost just over a pound in the past 2 months. They started her on a week of Vanco and added a night of TPN. We talked to Dr. Jennings and he said a UGI might be in order, and Gib and I begged to try everything else first.

Now it is a week later, all her signs of overgrowth are gone, but she is still vomiting. UGH.

So this afternoon we are headed to CHB for an UGI. I hate these. Ellie doesn't mind them too much, they do not involve a blood draw or a shot, so she is happy about that. But the worst part is getting the thick white barium out of her after the study. This one will be different because I cannot be in the room with her for this one, pregnancy and radiation do not mix. We have talked about it a bunch last night and today so I think it will be ok.

We call the UGI cave that they put you in a camera. So we bring our camera, Ellie takes pictures of the camera, the room, the tecs and us and then the "camera" takes pictures of her belly. It worked pretty well last year, so we should be good this year. Knock on wood. We got a KUB x-ray last week and Ellie ran into the room, stepped on the lever to lower the table, hopped on, laid down, pulled up her shirt, lowered her pants to expose her belly and yelled "say cheese!" . You should have seen the technician's face.

Now of course through all this Ellie has been her normal bubbly self. She is still going to pre-school, up to Maine for her grandfather's 70's birthday, to ballet, to swimming lessons and building the most awesome Lego castles. She doesn't like the vomiting part, but she has over all been pretty good.

Both Gib and I are not sure it is an obstruction that is causing the problems but we seem to have looked at everything else. I really don't want to see one today, but on the other hand I want answers as to what is wrong. Again we are heading into summer with GI issues. We lost most of our summer last year to GI issues and surgeries. I would love it if we could not have that happen again. I would like to worry about what we are going to do for fun and how we are going to fit it all in, not about being inpatient again. And I really don't want to have to tell Ellie that she needs another surgery, she remembers too much from last summer.

Sorry, no pictures on this post. I will post more later. And we will update you on anything that they find during the study.