Sorry for such a long time in between posts. I’ve gone to update many times but as soon as I try to start typing my thoughts get all jumbled and I just end up staring at a blank screen. I’ve been waiting for my thoughts to clear up but I think if I wait any longer Nora’s blog may never get updated so I’m just going to push through it and hope it turns out legible.
So after Nora’s contrast enema at the beginning of Oct. we learned that her entire large intestine is dilated with poor motility. When we first discovered that she had bacterial overgrowth back in Sept. it was thought that it was the cause of the dilation and poor motility but in fact it could be the other way around. But there’s no way to know for sure, kind of like the age old question….which came first, the chicken or the egg? Although it’s hard not to wonder, which came first really doesn’t matter, just getting Nora back on track is what matters.
Basically her large and small intestine have opposite needs at this point. Food needs to stay in her small intestine as long as possible for maximum absorption but food needs to clear out of her large intestine quickly so she doesn’t get backed up. Her large intestine not clearing out correctly causes her pain, bloody stools, creates a nice home for bacterial overgrowth and ultimately makes it more dilated and motility even worse. Even though Nora easily poops 5-7 times a day technically she is constipated because her bowels are not emptying out as they should be. When she had a regular abdominal xray in Aug. the radiologist’s note read “does this patient have constipation issues?”. At time we actually laughed and thought he was an idiot – who can poop so often and be constipated?!? Well we’re not laughing now and he obviously wasn’t an idiot.
Initially, when we finally learned what’s going on and how the needs of her small intestine and large intestine are against each other it was really overwhelming, well I guess it still is, we’ve just adjusted to it more. Completely changing the way we’ve been thinking about and feeding Nora for the last 3 and 1/2 years is a big adjustment. All along we’ve been feeding her foods that will stay in her system as long as possible, even adding thickeners to slow it down and avoiding foods that go through her quickly. Which without motility problems that’s just what you want with SBS but now that she’s developed poor motility…..ok here’s where my mind starts to get boggled…..you can see our challenge. So now we’re trying to find the balance of getting food to stay in her small intestine long enough to absorb adequate nutrition but then quickly go through her large intestine. We have not found that balance yet.
Taking laxatives on a daily basis is usually the recommended treatment for poor motility but ultimately they make the problem worse because the colon starts relying on artificial stimulation and gets even lazier. With Nora still being so young we are hoping to only try laxatives as a last resort. So we’ve been trying different foods, supplements and treatments (which I will go into detail about with a later post) to try to get her large intestine working properly. At this point we are going through lots of trial and error hoping to find the right combination of treatmetns. Nora is still having some pain and bloody stools on a frequent basis but it’s no where near as bad as when this all started a few months back, and some days are better than others.
Nora’s GI doctors want us to continue on this trial and error path as long as her pain is “manageable” meaning that she isn’t in constant pain as she was a few months ago. If we can’t get the dilation in her large intestine down and get it working properly then at some point her doctors will want to discuss surgery to taper down her large intestine. Obviously that is something we want avoid at all cost. Nora’s weight has been down since all of this started so her TPN calories have been upped and she is still getting some supplemental hydration fluids. She may need more TPN than she’s needed in a while to get her through this and that’s ok, we’ll take all the help we can get.
Now on to the brighter side of life…….Nora’s first trip to the fair! 🙂
Hi. My daughter is 5 years old and was diagnosed with Chronic Intestinal Pseudo Obstruction at 2 months old. We lived in Michigan(I am from Alabama), and just moved back to Bama. It sounds like we have some things in common, and I just wanted to let you know I would like to keep in touch. My daughter sees Dr. Dimmit in Bham at the IRP, and his nurse told me about your blog. Feel free to contact me. Also, if you would like to read Shelby’s story, go to carepages.com, sign up(free), and type in shelbywood. I will be praying for your daughter, Nora, and your family.
Sincerely,
Lori Cochran
Sometimes i like to sit down and read your posts about Nora, it gives me hope about my son who is also a sbs kid! he was born 6 weeks early and lost all but 24 cms of his small intestine and 26 of his large.. he has a reconnection surger at 5 almost 6 months old and after that we found out he had a dilated piece of bowel after he started throwing up morning, night, in his sleep, etc. He had the step procedure surgery and has had no problems since and is doing GREAT!! Have you considered this surgery for Nora’s dilated bowel?
I have not spoke to you in a while and I was wondering how do I make a web page like your to reach others with children that are missing intestines? Paris is now on splash and we have moved to NY so she can get better medical care.
Hi, I have visited your website and it is amazing, with a lot of information. I will be reading everything, and I’m sure that will be helpfull for my daughter.
I’m from Brazil and my daughter, Manuela, is 30 month. She born with malrotation and she has about 20-25 cm of her small intestine. Her large intestine is preserved. After 8 months in a hospital, currently we are in our home, with all the cares that you know very well.
Currently, she is on TPN and Enteral nutrition (60/40 of her total calories). Her lifer is good, thanks God. She has about 20 pounds and 80cm height. She walks and runs. She is very smart.
The small piece of her small intestine is very wider. Our doctor, one of the best doctors in our country, is thinking about to propose us the STEP surgery. First me and my wife avoid this possibility, but we are considering this procedure.
As in Brazil we have a few expertise with SBS, I really apreciate if you could help us with some informations:
Do you have some experience or knowledge about this procedure – STEP?
Do you know others succesfull cases?
Tomorrow I will check with our TPN supplier about omegaven. I found It is fantastic.
Me and my wife saw the picture of Nora in the pool… Wow it’s fantastic… I believe she has a catheter, right? How you protect her catheter? Is one of our dream put Manuela in a pool…
Well we really apreciate your help, and we invite you to know our blog. The language is Portuguese, but has a lot of pictures.
http://logicadoamor.wordpress.com
I wish all the best for Nora and the family. She is a fighter, and I’m sure that the family makes everything special.
I would like to keep in touch, I feel motivated when I read succesful cases… Doesn’t matter the way, only matter the happy end.
Sincerily,
Fabio and Cris
hi there,
your blog was recommended to me by a friend on the PN – down under support network and i am THRILLED to find your beautiful girl. My 2 1/2 yr old suffered malrotation in June this year and has 8 cm of duodenum and 50 cm large bowel. Her doctors have her on 12 hours every day TPN with SMOF lipid. But they wont consider continuous feeds or food. I am so excited to see Nora eating and swimming….i am reading over your blogs to get all the info I can….but HOW DID YOU DO IT???
I would love any advice or support if you have time.
Thank you so much,
Melanie