Pacer/Feeding Tubes

• By Char
• Posted November 15, 2007 at 10:14 am

Michelle,

I'm sorry you are going to have to wait to get your pacer, even once you get insurance approval. Hopefully the botox injection will help hold you over. It takes time to see results from the pacer once it's put in. I hope that even if you can't have it put in before your surgeon leaves you can have the insurance approval. That can take time and work from you and/or your doctor and his office. If you have it before he goes, then you won't have to worry about if they want another letter or to talk to your doctor. Also, you won't have to worry about that once he's back and can have the surgery as soon as possible.

While I may really dislike my feeding tube and talk against it when in a bad mood, I really do love it. Life would be so much harder without it, and I would spend a lot more time in the hospital. I have a GJ-tube. I use my G-tube to drain my stomach, so I have less reflux and also throw-up less. I can eat or drink small amounts and open my tube or hook it to a bag and some of what I have had to drink or eat comes out, which means I'll throw-up that much less. I use my J-tube for meds. and feeds. All of my meds. go in my J-tube. If you had a tube, maybe you could get your meds in your tube and decrease how much you have to use your line, or maybe even not need your line any more. This also allows me to do tube feeds. That's better than having to drink the liquid nutrition that usually taste so bad that it would make a person with a good stomach feel sick. With a J-tube it completly skips the stomach. I have to watch the volume, I usually struggle with 80cc/hr with my feeds, but any rate that you could do is more nutrition for your body. We also add water to my feeds, to help keep me from becoming to dehydrated. The tube doesn't really restrict social life. You can't really notice it under clothes when not hooked up to anything. I'm on feeds 21 hours a day, so I have to carry my feeds around in a backpack, but I got a hydration backpack (like what is used when hicking), and it's less obvious than the thing that comes with the pump. A lot of the time people don't even notice it. Since I have my g-tube, when I'm doing okay, I'm able to drink something or eat a bite or two of something when out and if need be I just go to the bathroom and open my tube to let it drain out, and fairly often this will keep me from throwing-up for a little while.
Having nutrition that sticks with you (as opposed to throwing most or all of it back up) really does help.
Hope things improve,
Charity

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• By tammyrucker
• Posted November 16, 2007 at 2:34 pm

Hello,
I am like you, waiting to have a gastric pacer placed. I have been fighting with my insurance company for the past 3 months. however, right now I also have a j-g feeding tube. With the tube i can eat soups, which I then go empty through my g tube about 30 min. later. The g tube is very small, so I am unable to eat any solid foods, becaurse it will stop the tube up. But at least I can at least taste the soup, were before I couldn't eat anything at all without getting so sick I could die. The GI Doctor put my tube in, but I think a surgeon will also. My tube does bother me alot and hurts around it because the MD put in right under my breast bone. So MD don't put it there, which I have been told is much better, so make such to ask them were are they going to place it. I found a neat trick on keeping the gastric juices from coming up around my tube and burning my skin. I get the round makeup pads and cut down the middle and place it around my tube. This works great. I wish you all the luck in the world and pray that you also will get your gastric pacer also. Please let me know.
Tammy

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• By midsomersdream13
• Posted February 21, 2008 at 11:24 pm

Hi,

I see in here so many people struggling to get their insurances to approve the pacemaker surgery and I am wondering why this is happening. I am in a clinical trial here in Wisconsin and I was the 11th one to get it. Within 2 months of my failed gastric emptying test they had it in. My insurance was approved without any problems so I guess I was lucky. I am on Medicare/Medicaid for a disability incase you wanted to know. Have any of you checked with the University Hospitals where they might perform this surgery? Have you looked into the clinical trials? I will have mine 2 yrs next month and although I still have bad nausea and pain at times the vomiting is almost gone and my gastric emptying is almost normal. It is worth the wait if you have to wait. Please feel free to contact me at my email.

Tina Smith

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• By chewy1
• Posted February 21, 2008 at 11:49 pm

Tina,
Wow! I think you are the first person that I've heard say that getting insurance approval for the pacemaker wasn't hard for them to get. About 4 years ago, my doctor sent me to one of the specialists who does the pacemakers at KU med center. Up to that point all my gastric emptying scans had shown a big delay but on that particular one it wasn't as bad and I had managed to stabilize my weight. The GI doctor who did the surgery said that it would be almost impossible to get the insurance approval since I wasn't in worse shape. He told me that even if I had a severe condition that it would take months and possibly over a year to fight through the appeals. That pretty much convinced me to not even try if the situation became worse.
Since then I fluctuate from getting in a condition where my primary doctor starts wanting me to go back to the specialists to try to get the pacer but I haven't cooperated because I felt like even if the specialist agreed I was in need of it that getting insurance approval would be almost impossible.
I am on disability too now. I was on Blue Cross back when it was originally discussed and the policy at that time said they would not pay for it because it was considered experimental. Now, I'm on Medicare and I just assumed that they would deny it for sure.
I don't think at this point I would be a candidate for it because in my last gastric emptying, it showed that I was dumping too fast now. The GI doctor said that it is possible that it has, and will make these drastic switches (either one causes the same problems) all the time.
I don't know if they will do the pacer with the rapid dumping too...it looks like to me it would work the same way but just the adjustments would be different...but I really don't know enough about it. Does anyone know whether it can be used for either situation?
Your comment caught my attention though because I had basically ruled out the option of the pacer because of thinking I couldn't get Medicare approval...now I can keep in mind that that option is still open for me if the situation warrants it.
I had been doing better during the time it was discovered that I was dumping too fast (with the nausea and vomiting, but the pain was definitely a problem.) I suspect that in the past two weeks I have reverted to the delayed again, because the nausea and vomiting has become severe and I've had to have IV fluids several times and lost 12 lbs in about 4 days .
But, anyway, thanks for sharing that it is possible to get insurance approval for the pacer. I will be able to use that as my "safety net" if I start backsliding again.
Judy

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• By midsomersdream13
• Posted February 22, 2008 at 8:20 pm

HI Judy,

I go down to Madison on March 12 for my 2 yr anniversary checkup but also because my symptoms have increased meaning I need a little adjustment. I am pretty sure that the pacer regulates the stomach and the way it processes either way but I am not positive. I only know the slow part because my gastroparesis is from having diabetes. Also, keep in mind that you don't have to be underweight or so sick you are tubed up...I am a heavy woman and yes, I did have a feeding tube but not until AFTER I had the pacer put in. It took awhile for it to regulate and do good things for me. Medicare will cover it. I know. And if you can check with your doctor, maybe he could consult with my facilities or Dr. to find out how to expedite the process. If you have any questions you want me to ask while I am down there please let me know. I am perfectly willing to do that for you. I can only speak from my own experience and they are the experts on this thing. Gretchen is the NP who pretty much does my adjustments but she knows all there is to know about gastroparesis and the pacer. I go on the 12th of March. By the way, have you or anyone you have talked to found a good way to help with the nausea??I really struggle with this and it doesn't matter if it is morning or night or if I ate or not. They have me on compazine, phenagan, and zofran. I have to rotate the usage and recently I have developed anemia and they don't know why ...My hemoglobin is dropping with each test..every couple weeks. Thanks for your help as well. Please feel free to email me on yahoo...I don't always get to this site. I don't know how comfortable you would feel with sharing emails though so you let me know...

Tina

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• By michdey
• Posted February 23, 2008 at 1:27 pm

Tina et al,


I received word on Thursday that the gastric pacer surgery has been officially denied because the insurance company considers it "experimental". My nurse case manager has encouraged me to begin the appeal process so I' ll need to make some phone calls on Monday. It is very frustrating and depressing that I have no other options available and the insurance company still denied it. I am having surgery next week to complete the feeding tube placement--I have only been using it for meds--once the surgery is complete, they will keep me in the hospital for a couple of days to begin the tube feeds and to make sure I am tolerating them okay. The feeding tube was only supposed to be temporary for a couple of months until I had the surgery so now that it has been denied I am not sure what is next. Anyone out there who has had different surgical procedures, could you send me a message and let me know how it is going? I know some have had surgery on their stomach and also the pyloris muscle???Also, for those who have a G-J tibe in--do you get drainage coming out around the tube? It was a milky white/yellowish color but this morning it is a dark brown discharge. Well,, I am rambling on and on--hope everyone has a good weekend.

Michelle

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• By midsomersdream13
• Posted February 23, 2008 at 2:07 pm

Michelle,

I had the g-tube feeding tube for 6 months and yes there is going to be some drainage, just make sure they give you enough gauze and bandages to absorb it. if it leaking too much let your doc know, it shouldn't be a mess. The feedings are pretty tolerable but I had to do them slowly at night...(through the night). During the day I ate only what I could tolerate and if I threw up then I had to go back to liquids. It is not fun and I wish your pacemaker would be approved. It is a godsend most of the time. I still have alot of nausea and sometimes the throwing up but I can eat solids and most of the time keep it down. Eat slow, and not till your full. Did you contact Medtronics to see if they could help you with the appeal process? Just go to Medtronics.com and check it out. If I can help in any other way let me know...I do have to say this though, the shorter the time the tube is in the better. I had to have a small bowel resection after they removed my tube to close up the opening in my bowel because it had been there for so long.

Good luck,
Tina

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• By deb1
• Posted February 24, 2008 at 9:52 am

Tina: Hello. Whoa-you've scared me with the bowel resection. Currently, I have a G/J tube-it's been in since 9/26/07. I only use it now for mysleep medicine. I hate it. It hurts, it drains (yes,, a yellow/white color, the flesh around it is raw-they call it granula tissue from the stomach. I am currently using tpn for nutrition because I could not gain any weight with tube feeds despite running at 80-85cc for 23 hours a day. IN fact I lost 4 more pounds in the two 1/2 months I was on tube feeds. Of course within the first month of TPN I got a line infection. I just saw a Dr Koch in Wake Forest and repeated all those tests over again. I hope he has some hope for me.

I'm rambling-I did I have a question-how did the G/J tube cause your bowel to need to be resected? I'm just curious also when/how did your gastroparesis develop?

deb

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• By midsomersdream13
• Posted February 24, 2008 at 10:01 am

Deb,

I didn't mean to scare you, my situation could have been not so common but unfortunatly it does happen. What happens is when they do take the tube out , the opening must close up so that the draining stops from the bowel. Mine did not close on its own. After 24 hrs at home changing bandages every hour, my surgeon brough me in for and "emergency" surgery to repair the small bowel area the tube was in. Initially it was not the best pain wise but now it is perfectly fine and everything works fine. No worries. Everyone's situation is unique and I think that is important to remember. It is strange how my gastroparesis developed. Within 2 months time I went from nothing to throwing up 4-6 times a day, getting dehydrated repeatedly, losing weight, and terrible nausea. My family doc sent me to the GI and did the emptying test and I had almost no motility. My Gi found out about the clinical trial in Madison on the pacer and got me in. They suspect it is because I am diabetic that I developed this but is questionable only because my diabetes was never really out of control. They caught it early. BUT, it could have been there for awhile and caused this damage. I hope this helped. Remember, everyone is unique..stay hopeful.

Tina

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• By mariel
• Posted February 28, 2008 at 12:11 pm

hello Charity,

i was wondering about your GJ tube? that's interesting you are able to go out with the feeding tube? my father developed GP after having gall bladder surgery. they cut his common bile duct accidently stayed in the hospital for about 3 months. upon that discharged they placed a GJ tube. one for drainage the other for feedings. while in the hospital he couldnt eat anything, clear liquids made him sick. by nov they removed the tube. we thought he was doing well. right now we just had our 10 readmission. we just had an appt the GI doc said that he thinks the reason he get sick is because of some kind of infection going on that causes his stomach not to work. personally i dont this so, but i could be wrong. he also said that what could be causing him to nauseated/vomits is because of the possiblity of a partial block in the bile duct. the surgeon who made the mistake had to "repipe" what he had mistakenly cut. the GI doc whats another GI doc do and endoscopy to look at the biliary tree, to check for any blockage.

but going back to the GJ tube. right now my dad does eat. he was eating easily digested foods, soft foods. but lately we changed his diet, to liquids and soft foods. the GI doc said liquids low fat, high carbs. if they dont find anything in the endoscopy they want to place the GJ tube back in. my dad doesnt want it back. the hassel with dealing with it was awful. when it came out we thought it would never stop leaking. right now he eats, but we notice after about 2 weeks he starts to get "sick" feels nausea and vomits and @ times vomits old bld. can you tell me if you are able to eat? i know when my dad had the GJ tube he ate and majority of the time had the clamp open to empty his stomach. i'm really lost, don't know what is going on with my dad's condition.

where are you from? how long have you had the GP?

mariel

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• By Kozush
• Posted February 29, 2008 at 4:56 am

I'm one of the lucky people who had no problems getting their insurance (United Healthcare, interestingly enough known as one of the WORST insurances to get it passed through) however, there was a lady from Medtronics that did all the work, so I'd probably have to give her all of the credit. I can't remember her name unfortunately, but I'll see if I can get it. I had it approved in a week, and it was a few weeks after I got my tube. I also got the tube to get me perked up for surgery, but a month after the surgery (nearly to the day) I found myself back in the hospital with dehydration and to manage the pain/nausea/vomiting again. 6 weeks after that I had a PICC line in my arm. I am involved in the study, so I was turned off for 3 months, but it was randomized, so no one knows exactly when. The surgery was July 18, as of today Feb 28, I'm still dependent on my GJ for medication and managing to get in enough fluid to keep me from being severely dehydrated and still needing IV access of some sort to maintain hydration and for Zofran. I'm not entirely convinced it's going to end up helping me, but there's lots of suspicion that I also have small and even possibly large bowel motility problems, which in that case makes the pacer moot...except no one is sure exactly how the pacer works, because it rarely actually affects gastric emptying. It also seems to help those with diabeetic gastroparesis the most, people with idiopathic is kind of all over the place as to whether it helps or not...some have great amazing results, and on the other end of the spectrum, for some it does absolutely nothing.

Not trying to scare you, but just remember, the pacer isn't a guaranteed fix...oh and yes, insurances CAN deny it, because right now it's not fully approved by the FDA, only under HDE, Humanitarian Device Exemption meaning it shows a lot of potential for help and is safe, but fewer than 4,000 are placed a year and is still in clinical trials, although it seems it should go through the FDA pretty quickly...however I've heard that at least one doctor at Mayo has absolutely no faith in the pacer at all...but you never know! So don't get ahead of yourself, but have hope at the same time :)

Good luck, feel free to contact me any time,
Sarah

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• By Char
• Posted February 29, 2008 at 7:46 am

Mariel,

I hate that you dad is having such a hard time. Is he back home yet, or still in the hospita? I'm in the hospital right now. I've been in since Feb 11th and haven't really been able to improve this time. I know GJ tubes can be a hassel. I can't even count how many I've had. When I started with the GJ tubes I couldn't go more then a couple of weeks without my j-tube coming back up into my stomach, because of all the throwing-up. We tried all kinds of things, differnt types of tubes, and one time my surgeon even built a tube for me using two different types of tubes. I eventualy got to the point where I couldn't tolerate any feeds and went on TPN for 3 years. I'm now back on tube feeds. It took a while after getting my pacer to be able to tolerate them. Since going back to tueb feeds we have found a brand and type of GJ-tube that I do pretty well with. I think the longest I have ever been able to keep a tube is 5-6months. I've had the balloon pop on the inside of my stomach, valves to the balloon that are defective, tubes splitting, all kinds of weird stuff. Right now I haven't had anything to eat or drink in just over a month, because I'm in one of my bad spells, but when I'm doing well I eat some. I stay of 21 hours of feeds, but eat a little too. I try to stick with easy foods, but sometimes I get tired of it and decide I'm going to eat something even though I know I'm going to pay for it later. I haven't eatten meat or had a salad in I don't know how long. Those are two things I never touch any more, because they seem to be the worst thing I could eat. I don't really miss meat, because I was never the type of person who would crave a handburger or steak or anything like that. I do miss salads though. When I go to eat something I also think about how easy will it be for this to drain out my g-tube. If I want to keep anything at all down then I have to allow most of it to come out my g-tube and some things will get stuck and clog it up.

I too had my gallbladder taken out within the first year of getting sick, but that isn't what caused my gp. My gp had progressed to my gallbladder so it wasn't emptying.

I live in Tennessee. I've been sick for about 6 and 1/2 years now.

I'm praying they can get your dad feeling better without him having to have another tube placed. They can be a pain to deal with, but they sure are important.

Have a good weekend!
Char

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• By twin
• Posted February 29, 2008 at 11:39 am

Hi Char,

I have a question regarding the dentist, Do you really have to have the device turned off to go to the dentist if they are using a drill? Have you gone recently? Thanks Karry

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• By Char
• Posted March 1, 2008 at 8:54 am

Karry,

No, going to the dentist shouldn't be a problem. Never let anyone, at the dentist office or anywhere, lay anything on your stomach unless you are sure it doesn't have a magnet. I went to the dentist in Jan and had some feelings done, and it didn't other my pacer. How have you been? I wish I could say I was doing well. I'm in the hospital, and have been since Feb 11th. I don't seem to be improving from this crash. Hope you are doing well and I hear from you soon.
Charity

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• By twin
• Posted March 1, 2008 at 11:53 am

Hi Charity,

I'm so sorry that you have been in the hospital. I'll be thinking good thoughts for you. Thanks for the info regaring the dentist. I read in the booklet from medtronix about the dentist drill, It seemed a bit overely cautious, I dread going to the dentist, I would rather do anything medical instead. I went to San Francisco last weekend my first trip out since my surgery. It was really fun, except for the food part, it's hard to eat out, but I enjoyed myself. I will be thinking of you and hope you feel better real soon. Take care talk with you soon. Karry

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• By mariel
• Posted March 1, 2008 at 4:30 pm

hello Char

sorry to hear that you are in the hospital. can i ask how did you develop GP? looking @ your profile you are very young to be going through this.

as for my dad he was reamitted on feb 19 (unfortunately i was on vacation with my husband and 4 kids; we were in orlando FL) my mom calls me to tell me that she called 911 coz he vomitted coffee ground bld. the same old thing, this would have been his 10th readmission. he was discharged on feb 24. so by the time i got back to CA he was home. but his started to HICCUP that is his main problem. i hear you guys c/o pain with tht GP, with him no pain. but after several days hiccuping i know he c/o pain to the chest. i think the pain is d/t the reflux. my mom says that when he hiccups it smells very acidic.

this past wed i brought my dad to see this GI doc. this doc i guess will be following him, my dad has only seen this doc 3 times as an outpt. he says he doesn't think there is really anything wrong with his stomach. he was my dad to to another CT then later do an endoscopy to look at this billiary tree. if you dont know my dad had elective gall bladder surgery and it went wrong. the surgeon cut the common bile duct and needed "repipe". so this GI doc says there might be some slight blockage to the bile duct. he still wants my dad on the same meds. he is on carafate( for his ulcer), prilosec, and reglan. the other meds is for his depression and 1 med for his heart.

i have heard you guys talk about the med you guys get from canada/europe. what does your doc say about you talking this unapproved FDA med?? my father's GI doc menition this last visit about a pacer (he is not quilified coz i guess this is used for diabetics) he also said meds that come from canada that is not FDA are not safe to take. so i was wondering what your docs are saying about meds you talk that is not FDA approved. also what liquid vits do you guys take? how does it taste?

right now my dad is still hiccuping. he has vomitted 2 since i got back on feb 27. i really dont know what to do. i'm telling my mom just to give him liquid stuff. so do you guys juice everything. i just feel my dad is withering in front of my eyes. i cant bear to look @ him. i feel so sorry for him. my parents live with me with my husband and 4 kids since he got home the initial discharge on aug 2007. what is so hard is i have a baby, 9 months old. when my father went in for the elective gall bladder surgery my baby was just 3 wks old. this baby has grown up in the hosp. then later my baby ended up with seizures. right now my baby is doing well. no seizures since oct 2007.

char i hope you are feeling better. i will keep you in my paryers with everyone else suffering with GP. take care.

mariel

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• By Char
• Posted March 1, 2008 at 6:04 pm

Mariel,

My gastroparesis is idiopathic. I really don't think it was a virus, beucause I hadn't had anything for months before getting sick. Since mine has been progressive the way it has been there could be so underlying something, we just really don't know. The pacer can be used in gp patients that don't have diabetes. I have a pacer. I do think I have heard and read more then once that it doesn't work well for patients like your father that have post surgical gp.

It sounds like you have your hands full. I'm glad you are able to help your parents out like you do. I'm sure they really appreciate it. I'm also glad your baby hasn't had any seizures in a while. The added stress of that has to have made things even harder.

The med. from canada you are probably talking about is Domperidone. I tried it a long time ago, but it never helped me. I have head lots of people see great benifit from it though. If you are worried about getting it from another country there are a few compounding pharmacies in the US that you can get it from. Mine came from one in N.C. It can be a bit more expensive that way and most insurances won't cover it. If you are interested in getting it I'm sure I could find the phone number and address for the place we got it from. My doctors were find with me taking it. One reason it isn't FDA approved is because there just isn't a big enough market for it here. It is also a med. used to help women lactate.

Thank-you for your prayers. This crash has been pretty rough and we don't seem to be able to turn things around.

I hope you can find something or someone to help you dad soon.
Char

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• By chewy1
• Posted March 1, 2008 at 6:13 pm

Mariel,
I was reading your questions to Char about the medicines from Canada and Europe. I have tried the domperidone which is one of the medications you have to purchase out of the US. It didn't work for me but I know it does help a lot of people. I had complete confidence in ordering this medication and taking it because it was prescribed by one of the leading GI doctors in the country. This particular doctor provided all the information I needed to order the medication and the appropriate dosages and such. I felt completely safe in taking it and my other doctors never had a problem with me using it. My family doctor did want to read up on the medication when I first began taking it so that he knew how it worked and would know what to look for in case of problems, which in my mind is the kind of medical professional I want taking care of me.
I am also getting ready to begin a new medication that I am getting from Canada. My family doctor prescribed it because my usual nausea medicine has stopped working. I'm not sure if it will help or not but my doctor felt we had nothing to lose at this point. I do think it used to be available in the US but was removed from the market because of the potential of causing birth defects. That is not a concern for me at this point so we aren't having to worry about that...and again my doctor has done his research and will monitor me closely.
I guess my point is...if nothing else helps and you have exhausted the medications available in the US then it can be worth trying something from another country. Just make sure that you and your doctor are educated on the medication and possible problems that might arise.
I'm not sure if I understood what you were saying about the pacer, but if you were told that you had to be diabetic to get the pacemaker I think you should question that too. I may be wrong but I really don't think that is correct.
Good luck to you and your Dad. I hope they find answers for him soon.
Judy

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• By Char
• Posted March 5, 2008 at 7:39 am

Karry,

You're right it is so hard to eat out. I know I have a problem a lot of I want to eat, but then I have to worry about where I'm going to be after, or finding something I can eat. I usually end up getting a baked potatoe or something like that.

Hope your dental appointment went well. I didn't have a choice in putting off my last appointment, because I hadn't been in 4 years(every time I would make an appointment I would be in the hospital or to sick to go). My orthodontist told me I really needed to go. He said by the way my teeth looked if he didn't know about my condition he would think I was bulimic. I was really nerves about going for the fillings, and my mom keep saying if I can let them do all they have done to me I could stand to have some fillings done. If you haven't been yet I hope it goes well.
Thank-you for your thoughts. I'm still in the hospital and still not doing well.
Charity

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