WARNING: the foods we cook for Abby are safe for her, but not necessarily for everyone. Please confirm any ingredients are safe for you before using in your diet. Food Allergies can kill and the best policy is complete avoidance. Read this post for more info.

Sunday, December 2, 2012

No More Feeding Tubes?

My best friend Wendy had gastric bypass a few years ago- it changed her life and I am so proud of her I could weep! She has changed her lifestyle. What she feeds her family, her awareness of exactly what "fuel" is healthiest for her body is amazing- the last couple years for her family has been similar to Abby's Project Elimination. She inspires me. Her family as well as Derek's has a strong family history of Huntington's disease, she "gets" Abby and our 100 percent commitment to heal her more then any Mito family we know. Without her I am not sure we would have gotten this far in our battle to create Abby's own special protocol vs the Mito and come out better for it.

She stays active in gastric bypass support groups. The other day she called me to tell me she had read about a woman getting gastric bypass for severe gastroparesis-

WHAT?!?!? At first it horrified me a bit, how could a surgery that 20 years ago often caused gastroparesis and was meant for the overweight populations help starving people with gastroparesis?

The very first thought that popped in my head was about those crazy brides to be in the story that made headlines last year who tube to lose weight- sigh.

Then I started reading patient stories. I found a ton of discussions on the Inspire forum.

First, today gastric bypass and the gastric sleeve rarely cause gastroparesis. The surgery is minimally invasive for most now- in and out and sometimes even home the same day!

They have definitely really started figuring out how to do the surgery more safely with greater benefit, and it is rapidly becoming one of the most common surgeries in America and with far fewer risks then in the past.

What they are finding is that in some patients it is helpful to "reroute digestion". The stomach doesn't work well so they can route the food to make it to the intestine more quickly- very much the same idea as putting a permanent tube that dumps into the intestine instead of the stomach.

You can imagine the advantages! Getting to eat!! Even tiny bits at a time, is much better for your insides. Right now, it is a long recovery to "teach" the stomach to digest "differently." After about a year of intense efforts many patients find that for the first time in years their stomachs don't hurt. They are digesting their foods. Really a miracle.

Can you imagine? No medical holes in your body? No more constant infections? Feeding you or your babies real foods?

For some with Mito it seems the gastroparesis is the biggest hurdle. If they did not have a tube many of these little one's could live very normal lives. No more constant Dr. appts- no more infections..no more medical foods and their excessive price tag- for some it would mean no longer disabled. For many a much better quality of life.
Plus, a tube for all that it does help and keep some alive and some more comfortable can cause long term problems. Abby's GI said it should be the very last resort for her. His concern's were that when the digestive system is not being used, it loses the ability. More weakness, more choking, less likely to ever digest normally again. We agreed with him. For some with Mito it is life saving. They have lost weight, are unable to digest, unable to swallow without multiple hospitalizations for pneumonia. For some it is about quality of life. Some are just tired of the pain of eating and the tube provides some relief. Though many report the tube can be just as painful though different.

Clearly, the tube is not ideal and in some cases becomes a disability. It can be life changing either positive or negative. For all the good it can do it can also cause damage.

Of course it will be years and years I am sure before this gastric bypass or sleeve is mastered to the point it can be prescribed for more- it is at best risky. There are many patients who have not benefited. But, for those who have regained their lives after nearly starving to death, a true medical miracle.

We can hope in another 10 there will be no need for tubes in the Mito population- wouldn't that be terrific?

I tried to dig for some research and did not find a whole lot. I did find that vaccines can cause gastroparesis which I had not seen before.

"Furthermore, gastroparesis has been observed after vaccination for tetanus, anthrax, and hepatitis.[39]"

Gastroparesis – Current Concepts and Considerations

The above article I found through the gov. publishing so will have to dig deeper and see what else I can find.

Abby's stomach is doing well enough right now. But, after the shutdown showdown last year which really started this blog, I am anxious to be prepared to do whatever it takes to avoid the tube for her. Following a very strict diet has done wonders. Pureeing, grinding, avoiding chemicals and fats... but, I know it could get worse. If I had to pick between the tube and gastric bypass? Abby and I both vote for the bypass- still NOT normal, but long term has a better outcome. It still won't be an option for all Mito patients in the future, but it is the beginning of potentially other treatments-

Sooner then I thought possible, maybe the tube will no longer be needed.


Reagan Leigh said...

I think that would work for *some* people...the problem is, many of the children you see with feeding tubes cannot EAT! They don't have the ability to chew or swallow efficiently (or without aspirating). For some it's poor muscle tone, for some it's neurological. I remember how much we wanted to avoid the tube at all costs! Reagan had such a weak suck and never ever displayed any signs of hunger, getting her to drink her bottles was a nightmare! And medicine...nearly impossible! I would spend hours upon hours each day holding her with a bottle shoved in her mouth! She was stressed, I was stressed, it was horrible! I, like most families I know with kids with feeding tubes, am SO thankful for the tube! We know she's getting enough food/water now...we know she's getting all her medicines!! We have so much more time to just enjoy HER, instead of having to force feed her all the time!!! It was honestly one of the best things we ever did! Now, we still try to feed her a little here and there, just to keep her tummy working, but it's no longer this daily struggle to keep her alive!!

Diane said...

there are a few Mito patients like Reagan that there is no option but the tube. Honestly, these "bypass" options probably won't even be an option for children for many many years. But today, there are a lot more like Abby(more mild) being diagnosed daily. It seems there are more mildly affected today with Mito then profoundly. Since they less affected(mild population) there are fewer blogs but in the online communities it has been a real shocker to realize that there seem to be even more that are milder then Abby being diagnosed-
Also, I would think if a child was dependent on TPN because of stomach and intestine failure(again a smaller population) this would not be an option at any time in the future.

For Abby's population of Mito patients the surgery could be the better alternative. More of a curative even then a treatment. Again, this is a new take on how to treatment the GI issues, but I welcome any progress.

Maybe one day, the more profoundly affected populations like Reagan will also have better treatment options.

I hope that as they find better treatments for the "Abby's" out there, it will open the door to better treatments for those more severely affected by mito and it's complications.

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