Question about GP procedures

I have been reading all of your discussions and am learning a lot. Because I just found out that I have GP I have questions on what I should do. I have noticed that many of you have feeding tubes. According to my doctor he thinks I should do a pyloroplasty first. Is that the same info you received from your docs? Did any of you try the pyloroplasty and have it not work? I was wondering about the gastric pacemaker. My doc says it does not work. Is this true? I am worried about the pyloroplasty because I asked if it did not work what would be the next step and my doctor said removing my stomach would be next. That seems really scary to me. Have any of you had your stomachs removed? I also do not understand the different kinds of feeding tubes. Are you able to eat with them or not? I hope that is not a stupid question. What is TPN? Sorry about all the questions, but I am traveling to Chicago on May 9th to decide what procedure I am going to have. I am afraid I will make the wrong decision. I guess in a nut shell I would like to know the order of procedures that you have had and which ones have worked.

Amy

By Peggypeg
Posted May 3, 2008 at 5:38 am

Hi!

Sorry there are so many issues you face at this time!

I am a little "different" in as much as there are several "conditions" going on within my digestive system so I will leave out the procedures and investigations bit for now!

As for the tubes well here is some sort of help I hope! There is not much point in me recreating information which is already there and so I would think this link would give you a starting point:-
http://www.pinnt.com/therapies_main.htm
This will explain what a PEG is , a J tube and an NG tube - these are all tubes which feed people "enterally" - this means the feed is going in to the digestive system - either the stomach or the small bowel and the tubes are attached to either a syringe or a giving set ( a plastic tube) and the feed is fed slowly through a controlled rate on a pump which can be portable. People can feed during the day or at night and some of this will depend on choice, some on conditions and some on the regime and ideas of the care team - but remember its your body and your life and you have a say in what happens! Some people eat with enteral feeding and others do not! It is no use me saying you can because for example in my situation I cannot! Some people have a PEG for example as a temporary thing and they have a condition which means that for now they need the back up of the tubes and can start to build up to a full and more ( for them!) "normal" diet! Normal for me is my PEG feed.....so there are as ever in life variations which some people would not see as "normal"! Some people have a "button" type feeding device when they have been feeding for a while...this again can cause confusion as some patients assume everybody has a button type feeding device eventually - this again is not the case as there are reasons why this might not be possible!

TPN is Total Parenteral Nutrition and the difference here is that the feed goes into a vein. This is because the patient cannot absorb nutrients etc or tolerate the volumes of feed going through their digestive tract! There are loads of other issues but for now along with the link I have given you should suffice to distinguish between the two types of feeding!

It is in no way a stupid question! Thanks for asking and keep on asking! that is the way we share info and learn!

I expect others will come along and give their own explinations -

as I say I could not see the point in writing what was already available and so I hope you will read the link and start to see the differences!

Happy to help with anything else if I can.

Hope things sort out for you asap and you won't need to learn much more about tubes!

Chris
www.mypeggypeg.blogspot.com

By mariel
Posted May 3, 2008 at 6:20 am

hello AMY

i do not have GP but my father does. GP has been something new to our family. regarding removing your stomach, they may just remove a portion of it like a "gastric bypass" remove the portion that is not moving.

my father has not gone through any surgical procedure. i guess the docs are afraid or they don't think he is qualified. my dad was dx last june after a simple gallstone surgery. the surgeon made a mixtake a cut his common bile duct and ended up in the hospital of 3 months. since that discharge we have been readmitted 12 more times. the last admit was on march 18. we have been hospital free for close to 6wks (knocking on wood). my father has had a G-J tube which is a feeding tube placed in your stomach that conts to your small intestine (jejunum). for my dad his stomach wouldnt move. later they took that tube out, but we were still having trouble with nausea, vomitting, reflux, GI bleed. right now we have a PICC line which is an IV placed in the arm where i hook him up every night to TPN (IV solution which has nutrients your body needs). when my father had the G-J tube he was able to eat small amts.

i am glad you found this website. coz when my father was dx i felt so alone. i didnt realize there were people out there going the same things my father was going through. there will be alot of people who will give you good advice/questions you could take to your doctor.

i hope all is well...

mariel

By twin
Posted May 3, 2008 at 11:05 am

Hi Amy,
I'm so sorry you are going through this, we can all relate. I did have a pyloriplasty surgery, after trying the drugs, botox... I didn't notice anything different after that surgery, I still had the nausea after trying to eat anything. The next year, I had the gastric pacemaker implanted, it also isn't a cure, but it has helped at times with the nausea. This is such a frustrating condition, Let me know if you have any other questions. Take care, Karry

By chewy1
Posted May 3, 2008 at 6:08 pm

Amy,
I can't speak from personal experience because I haven't had to have any of the tubes and I haven't had the pacemaker. I know there are alot of people on here who can help you with those questions. I know that Char could provide you with a lot of answers. She has the tubes and the pacemaker. I know she has told me that the pacemaker wasn't a total cure for her either but she hasn't ever regretted having it and it does help. She is currently in the hospital but I'm sure when she gets back to having access to the internet she would be happy to answer your questions.
It just seems to me that going that route sure would be a less drastic than having your stomach removed...I guess I'm just an optimist but I have hope that they will soon find something that will be the miracle we are all waiting for...
I hope they can help you find the right procedure for you!
Judy

By SeussRN1
Posted May 4, 2008 at 1:21 pm

It seem to me that there are more options for you to try before the pylopasty. Have you tried any of the medicaion that are out there? I would be hesitant to go in for surgery with out at least trying the medications such as Reglan and domperidone ( you have to get it from Canada). I have had GP for 8 yrs and went from mild case the was controlled well with medication to getting all my nutrition from TPN. This is my 2nd round of TPN. I had been on TPN for a year, had the feeding tube and couldn't tolerate the feeds and then things got better and I had some botox injections and I was able to eat small regular food meals. Had my feeding tube removed at the beginning of Feb and then Easter dinner was great, but I haven't been able to tolerate any food except for 6 oz of fluid a day. So after a short 6 month break I am back on TPN again.

I an currently waiting for insurance approval for the gastric pace maker and hope it will help a little bit as I am all out of options after that.

So do some internet research there is good information out that the describes other methods of treatment besides going under the knife. Remember you can always go get a second opinion. Which I would do before I selected a surgical option, becuase not all GI MDs are will informed with GP.

Beth

Good luck

By docandkate
Posted May 4, 2008 at 4:17 pm

Hello,
Take it a step at a time. Be sure you've had adequate testing and know exactly what is happening within your stomach.
I had manometry and gastric emptying studies. Then I had Botox injections into the pylorus, which was in spasm. It temporarily relieved the situation (for about 10 days), and that was diagnostic evidence that a pyloroplastic would be helpful. I'd hate to think where I"d be without the pyloroplasty now.
I also have a GREAT deal of pain. My GI dr. says the pacemaker doesn't help with pain, if that is an issue with you. I also have non-functioning nerves in the upper stomach. I have to eat very carefully, mostly liquids and some soft. And gravity is your friend.
Welcome to this site. We are all learning from each other!
Katherine

By Kerri-ann
Posted May 4, 2008 at 4:27 pm

wow, i heard the gastric pace maker is not a cure and have had all of these options mentioned to me by my dr.s and the all say not a cure-may or may not help, etc buy what exactally is the pylopasy? Never heard of that

By JenD
Posted May 5, 2008 at 4:40 am

You should definitely consider drug options first. The domperidone has really helped me eat some and be able to take pills. I am still on TPN, but I am very thankful for the domperidone. Hang in there and know that you are not alone. Try domperidone before surgery. I also had some luck with a j-tube for feeding, but now I really mostly on TPN. I would also suggest a nasojejunal feeding tube to try before opting for surgery. The NJ tube can let you know if this type of feeding will work. Much less drastic than cutting (pyloroplasty). You might want to seek a second opinion.

Good luck.

By ajonesy
Posted May 5, 2008 at 1:34 pm

Thank you all for your input. I have tried Reglan and Erythromycin. Neither have worked. I have not tried domperidone. How do I get it? I have lost 50 pounds in the last 5 months. I am losing at least 2 pounds a week now. My doctor implied that geting the feeding tubes are "worse" than getting a pyloroplasty. I am not so sure, that is why I asked. I feel like at least the feeding tubes can be reversed. I am confused about the difference between a NJ tube and the j tube. I am really not having a good feeling about a pyloroplasty. The doctor that I am seeing is Dr. Soper at Northwestern in Chicago he is supposed to be one of the top three GI surgeons in the country, but I am more than willing to ask another doctor. Does anyone have any suggestions? I have heard good things about Kansas City. Is this true.

Thank you all more than you know,

Amy

By Char
Posted May 5, 2008 at 6:57 pm

Amy,
I have had all kinds of tubes, done TPN, and have a pacemaker. A NJ tube is a tube that goes up your nose and down into your jejunum. A J-tube goes from the outside of your abdomen straight into your intestines. A GJ-tube, which is what I have, can be used for feedings and meds. into the lower intestines and can also allow you to vent your stomach to decrease the acid and can allow you to drink and eat and let you empty some of it back out to help decrease your nausea and vomiting if that is a problem for you. I love my tube, well, it's really more of a love/hate relationship. I'm so gratefull that I have it, but to be honest with you, there are times when I just really want it gone.
I was on TPN for 3 years, but once my pacer started to kick in I was able to go back to tube feeds. Before my pacer I got to where I couldn't tolerate any tube feeds. I have had my pacer for almost 5 years. We know for sure that it helps me, not just tolerating tube feeds. There have been a few times where my pacer got turned off because of getting around something magnetic that turned it off, and when my battery died, the nausea gets so bad that unless it is turned back on within a day I get so bad I'm back in the hospital. We don't know that it's off untill my doctor goes to make an adjustment and we find out that it was off. That's just proof that we see improvement with it. I do still have bad spells where I can't tolerate anything in my tube and I'll dry heave and throw-up bile pretty much nonstop. When I have these spells I end up back in the hospital on iv fluids and iv meds till I can tolerate things in my tube at a rate that I can go home on. I'm actualy in the hospital right now. These bad spells have decreased in frequency, except I have been in the hopsital just over 60 days since the first of the year. I seem to be in a crash that I can't recover from enough to get me truely back to my normal.
TPN is nutrition that goes through the veins. TPN can be tricky to mess with, because after a long period of time it can effect the liver and you also have a cental line for it and TPN puts you at a higher risk for infection. Don't let this scare you, tons of people can do TPN and not have many problems if any. I recomend tube feeds first, but if you can't tolerate them and you can't take in enough by mouth you need the nutrtion, because malnutrition and dehydration can just make you feel even worse.
I wouldn't jump into having my stomach removed if you can avoid it. The tubes and the pacer are all removeable if they don't help you.
No question is stupid. It can all be a lot to take in and try to understand. Feel free to ask me any question you want.
Char

By deb1
Posted May 8, 2008 at 7:15 am

Amy: I have had the G-J tube-it was the worst experience of my life. NOW, I will say that some people do better with that than other things. My G-J tube site hurt so much I couldn't stand it. Others don't have a problem with this. Also, I think like others have said-you must be sure that your small intestine does not have a motility problem or you can't do this type of feeding. For me-my body would revolt and say no more then I couldn't do the feeds and I would like (Char) get so dehydrated and faint. I ended up on TPN because of dehydration.

Also, I met with a surgeon who wanted to do the stomach removal surgery (bypass) and while it makes since you must consider that if you have gastroparesis-eventually-in many cases it will affect the small intestine. So then you are left with no stomach and small intestine dysmotility. I'm going to be having surgery for another thing but will not remove my stomach at this time after another surgeon cautioned against this.

I'm curious as to when your GP started? I know that Mariel's Dad after GB surgery-that's when mine started. I've run across so many people that have had nonfunctioning GB's and then got GP. It's not the GB-I figured that out now! I just pray in our lifetime they find a cure for this. However, no one seems to be real interested in it. It's not a $$$ maker.

Best to you

By ajonesy
Posted May 8, 2008 at 11:46 pm

Thank you for your warning about the GJ tube. I am so confused about what to do. It seems as though there are no good options. How do you know if your small intestine is working correctly? I wonder why my docs have not thought to test it? My GP started after I had a Nissen Fundoplication, my hiatal hernia repaired, and my gallbladder out all during the same surgery. My surgeon did note that during the Nissen Fundoplication that he could not find the big trunk of my anterior vagas nerve. He could only find the branches of the nerve. He has admitted and concluded that my vagas nerve must have been severed at this time which is what caused my GP. Did your surgeon tell you what he thinks caused your GP? Is the vagus nerve involved in the gallbladder removal. I just took the word two different surgeons that it happened during my fundo. I wonder what causes GP during the gallbladder surgery? I am also hoping for a cure sooner than later? How do you know when you finally have to go on TPN? I am losing a lot of weight and get dizzy spells. I hope that I am not on the way to TPN. I have only had GP for under 5 months. Thanks for your time and answers.

Amy

By JenD
Posted May 9, 2008 at 8:24 pm

Hi Amy,

I also developed GP after having my gallbladder taken out in 2001 because it wasn't working.

Regarding feeding tubes and small intestine function...the NJ tube is a good way to find out if your small intestine can handle feedings before having the j-tube surgery. With me they also did a barium test where they injected barium into the tube and then watched how long it took to get through my intestines. The NJ tube is relatively non-invasive and doesn't require surgery. If I could go back and try the NJ tube first I would. I had a j-tube put in and had some complications of the surgery and now I can't really tolerate tube feedings because my small intestine is slow too.

I also have a gastric tube (g-tube) for venting. It is very helpful and I really no longer have to vomit because I can just drain my stomach with the tube.

I am also on TPN 12 hours a day. I have a PICC (central line inserted through my arm) where the TPN goes in. So far things have gone well and I have not had any infections. I feel great on the TPN and my liver is doing well so far too. It is a good option if nothing else is working for you.

Let me know if I can help with questions about tubes, TPN or meds. I'll try to give you the best answer I can.

I get my domperidone from Canada. My doc faxes them a prescription and they mail me the meds. You can also get it from New Zealand without the prescription. It has literally saved my life. I am able to eat a little and I can take pills by mouth which I was unable to do before the domperidone. Before I started it all my drugs had to be crushed and put into my j-tube or given by IV.

Good luck to you,
Jen

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