Odd question to those of you in the know

[Eliana]

This is an odd issue and I'll state up front that it has nothing to do with me personally having surgery nor anyone else. But I want to understand the mechanics of the different options out there.

My mom has been diagnosed with gastroparesis and stricture stenosus of the esophagus. Basically her stomach and esophagus are paralyzed and "nothing can be done". So she fills her belly with food and the food doesn't go anywhere.

What I don't understand is the "nothing can be done" part.

I suggested a colostomy but apparently the problem is too high up in the digestive process.

So what about gastric bypass? What are we bypassing? It just seems to me like the food can be rerouted somewhere else.

If you all don't mind just brainstorming with me, I'd appreciate it. I'm not looking for medical advice, I promise. I just need to understand because I'm having a hard time accepting that my mother is starving to death when it just feels like something else can be done.

Thanks! And don't worry about hurting my feelings or anything. I'm pretty good at treating this subject from an intellectual route not an emotional route. This has been a 20 year journey with my mom and this is unfortunately just a new layer. But they starved my grandmother to her death just three years ago because when she stopped being able to swallow the doctors refused her a feeding tube. After two weeks of not feeding her, they finally did the tube but by then it was too late. I just...there's got to be another way.

[justjill124]

First of all, I am not a doctor or a nurse but I do work in the health care industry. I don't think that gastric bypass would be an option since her esophagus isn't functioning either. The only thing I can think of is giving her TPN through an IV site. This could sustain her in the short term, but I don't know how long a doctor would recommend it. I hope this at least gives you something to talk to her doctor about. I'm sorry that you both are going through this. Take care.

[Eliana]

I knew I wasn't crazy! I knew there was something given intravenously. No, that probably wouldn't sustain a person for long, but it sure would help to get her nutrients right now. She's pretty much limited to water and broth at the moment and that's just not a way to get nutrients in. Even Ensure doesn't work.

Something to add to the list of questions of for the doc. Thanks!

[srmb60]

Many of us in the healthcare field are very reluctant to answer questions like this. It's statements like this ... This has been a 20 year journey with my mom and this is unfortunately just a new layer ... that frighten us off. So much history. So much struggle, sadness and worry.
Rest assured that we care and will be here to support you.

Keep pursuing. If anybody out there can do something, you'll find them. Are there any facilities that specialize in gastrointestinal stuff? MY SIL wrote a letter to some place in Texas that specializes in nerve conduction maladies and actually got a response.

[annie175]

Get a second, third, and 4th opinionl

[winning the war]

Does your mom have diagnosed neuroligical issues? That's kinda what it sounds like. Has she seen a neurologist? I'm sorry about your grandmother, and about your and your mother's struggles. Best of luck to you both.

[Eliana]

The "20 year" part started with a botched surgery that damaged a junction of three nerves. Now it's a matter of constant new medications to combat the side effects from other medications and now we're facing the fallout of so many medications.

I'm just brainstorming right now. I can't wrap my brain around the "can't do anything" part, that's all. It doesn't seem logical to me and until it is, I can't accept it and neither can my mom.

Thanks guys! I think I understand why gastric bypass wouldn't work now. It's just the "bypass" part that got me thinking. Yes, let's just bypass the esophagus and stomach please.

[beerab]

Get a new doctor- a doctor that says they "can't do anything" is lazy IMO. SOMETHING can be done- is she just supposed to starve/die/be in pain/etc cuz her body isn't getting nutrients?

The squeaky wheel gets the grease- when my husband was ill and the doctor was shrugging her off I literally had to fight with her to get my doctor a referral- turned out he had multiple sclerosis!

Here's some information I found- I'd make sure the doctor is checking these tests AND get a copy of the results, look them up online- see what things should/should not look like, etc.

http://www.gicare.com/diseases/Gastroparesis.aspx

I mean this site says her condition is common and treatable...

Also- look up ALL her medications- most of the time it seems doctor's don't even pay attention to the side effects! If she needs more help have a pharmacist look up all her drugs and tell him her ailments and he can tell her if any of the drugs could be causing the side effects OR if any of the drugs are interacting with each other negatively.

Good luck.

[QuilterInVA]

She said it is caused because of a prior surgery that damaged 3 nerves so I doubt medication is the cause. There are some things that just can't be treated. Ischemic colitis is one. My husband had that as well as a host of other problems. It means the colon is dying. His was too far gone and his health problems - end stage renal failure and vascular disease precluded a colonostomy. It sounds like what her mother has is similar to diabetic nueropathy. I'd certainly search for a way to prolong her life, but you can't exists long term on IVs. If you can't swallow and you can't move the food from your stomach, I'd think that means the stomach isn't processing the food. Food is digested by stomach acid before it goes into the intestine so you can't just dump it in the intestine. Maybe there are transplants being done somewhere. I'd be doing a whole lot of research quickly to see what the options might be.

Eliana, I will add your mother to our prayer chain at church and we'll be praying for her daily.

[Eliana]

Quilter thank you. And thanks for reminding me about stomach acids. Digestion is a complex process and you just don't realize how complex until you dissect it, I guess.

I just emailed my brother some options about surgeries I researched and my brother informed me that my mom has refused surgeries. So...so much for that and a great big never mind.

My mom's a complex individual. Apparently she's not on death's doorstep, but that's sure not what she told me!! Unfortunately it depends on who you talk to...her or my step-dad. I'm not saying she's living pretty...the problem is definitely still there. But if she'd quit being so stubborn, apparently there ARE some options.

[Leenie]

to you and your family.

[jiffypop]

hmmmm. this is a problem [what an understatement!!!!. i did a little research, and found two things: a gastric pacemaker MIGHT help - there was a recent clinical trial at the University of Kansas, and Medtronic has the product. here's the medtronic link that gives some information about it.

http://www.medtronic.com/your-health...vice/index.htm

given the nerve damage, this MIGHT be something to discuss with the doc. or a different doc.

the other thing i found out is that the surgery is essentially widening the pylorus [the hole at the bottom of the stomach] that makes it easier for food to 'drain' through the stomach. this is NOT a big huge surgery - i don't think it involves days and days in the hospital, and it may be done laparascopically [and not by opening up the entire belly]. it's a smaller surgery than the gastric bypass. again, another conversation to have with the doc - or a new doc - and your mom.

i hope that something can be done to help your mom. we'll be praying for her.

[Eliana]

Wow, Jiffypop, thanks for looking into that. I found similar information. Unfortunately we have to get her to agree to it and I think she's resigned herself to this.