Diagnosed with GP, and on TPN

By Sissy1
Posted December 16, 2007 at 10:10 pm · 30 replies
In Inability to eat

I was diagnosed with GP in March of this year. I had the usual Endoscopy, Colonoscopy, Botox injections ect. Nothing was abnormal except my emptying and some dialated bile ducts that I had a stint put in. Several tests to make sure my pancrease was ok. Went thru a lot of pain, discomfort, nausea and bloating. Got to where I just could not eat without being miserable and sick. I became malnutrition in Oct. and had a PICC line put in. Have been on TPN since Oct. I have also had conflicting emptying test. One slow, one too fast, one normal. I feel my only option is to try the Pacemaker, as I still cannot survive on what I am able to eat. Does anyone share the same experience and what have you done? Those of you with the Pacemaker, are you seeing improvements or not? I am so unsure of what to do. Hope to get some feed back.
Thanks, Sissy

30 replies

Oldest first
Newest first

By Charlotte1
Posted December 17, 2007 at 1:43 am

Sissy,

First I would like to welcome you to this site.

I have GP diagnosed in August and so far has lost about 60 lbs. I am not on TPN, but has been in the hospital 4 times. I have great difficulty with eating and keeping things down. It is trial and error that I find things that I can tolerate. Most of the time I drink a Slim Fast or a Carnation Instant breakfast.

There are a few people on this site that has the pacer. I am sure that they will share their knowledge with you.

The one thing that I have learned is that people with GP are uniqe to themselves with the food that they can take in. I will keep you in my prayers.

Charlotte

By finallywell
Posted December 17, 2007 at 6:56 am

Sissy,

I wish I knew what the deal was with those test!! I had so many of those test when I was sick! Some where slow, some not too bad, one NEVER DID empty I just threw up. I think the test were part of the reason the first specailist I saw gave me such a hard time. I'm starting to think after reading these post that maybe they should look into a different test!

I wish I knew more about pacemakers, but I don't think we even had that option when I was sick.

Hugs,
Marie

By Char
Posted December 17, 2007 at 8:47 am

Sissy,

I have had a pacer for over 4 years now. Mine helps a lot. It isn't a cure, but definitly helps. When I got mine I had been on TPN for a while, because I couldn't tolerate tube feeds. Now I am able to tolerate tube feeds. It takes some time, usually the average is 6 months, before you can see a difference with the pacer. I still struggle and have to deal with the crap that comes with GP, but life is better with the pacer then it was before it.
Char

By JenD
Posted December 17, 2007 at 4:13 pm

Hi Sissy,

I have had GP for a while but only recently had major problems. I got very ill and unable to eat or drink. The symptoms started this summer and progressed to dehydration and hospital admission. I had surgery to place a g-tube and j-tube. I nearly died because of internal bleeding and my stomach tore causing peritonitis. I have recovered a lot but have had a lot of trouble tolerating the j-tube feedings so I am currently on home TPN through a PICC line. I have also recently started domperidone and it has enabled me to start eating, although not enough to maintain weight.

I don't have any words of wisdom, but hang in there and know that you are not alone.

Take care,
Jen

By chewy1
Posted December 17, 2007 at 6:03 pm

Char,
I've typed this 3 times but get sidetracked and then lose it and have to try again.
I see that you have posted a comment to Sissy about the pacemaker but I'm not sure if she found it. She sent me a message asking how to contact you . She finally got insurance approval for the pacemaker but is wanting to talk to you about your experiences. I told her to post a comment to your posts or send you a friend invitation, but that I would also send you a message to let you know she is wanting to hear from you.
I hope you had a good day.
Judy

By Char
Posted December 17, 2007 at 8:16 pm

Hey,

Judy said you got insurance approval for the pacer. That's great. I'm very happy for you. She also said you had some questions. I'll be happy to answer anything I can. You can ask me on here or e-mail me. My e-mail address is c_smith63@hotmail.com.
Look forward to hearing from you,
Char

By twin
Posted December 18, 2007 at 11:54 am

Hi Sissy,

Welcome, I have had this for about 2 years now, I got from a surgery I had that damaged my vagus nerve in my stomach. I had the pacer implanted this June, after trying the meds, botox,and pyloriplasty surgery, It truly has been a long haul. It takes time and a bit of trial and error to get the settings correctly adjusted for you. It does help me with the daily nausea, I can't really eat any more, or different foods , but i guess it has helped a little. I have also had conflicting emptying tests 2 were slow 1 was rapid. My stomach went through a dumping phases after the pyloriplasty surgery. Who Knows....Let me know if you have any other questions regarding the pacer, Has your surgeon done many implants?? Take care Karry

By deb1
Posted December 19, 2007 at 10:09 am

Hello-I have GP that happened after GB surgery. I am on TPn as well. Karry-what surgery caused yours. I'm sick of living this way.

By twin
Posted December 19, 2007 at 12:05 pm

Hi Deb,
I had a large Hiatal hernia, So when they fixed it, the nerve was damaged. I know how you feel, We get so sick of feeling sick.. It's so comforting to know that their our others who really know what it's like and what pain we go through. Take care, Karry

By deb1
Posted December 19, 2007 at 5:03 pm

Hey there Karry:

How did you know the nerve was damaged-was there a test they did? Did you seek legal action? Are you worried about being on TPN? I pray they find some relief for us. I feel like I'm going to die most of the time. Deb

By Sissy1
Posted December 19, 2007 at 9:38 pm

Thanks for your comment Karry. It's sounding like most of us have had conflicting emptying tests, but all have trouble tolerating food. You sound like myself, and I was just wondering if you threw up a lot, or just had a lot of nausea and all. I do not throw up that much, but do have nausea a lot, along with pain, fullness, feeling really sick if I eat. I am very curious if others are like myself. I want to be confident that the Pacer is the right thing to do. Thanks, Rhonda
Oh yeah, my doctor has done a lot of pacers and has a research dept. in his building to follow the patient aftewards.

By Sissy1
Posted December 19, 2007 at 9:45 pm

Hi Jen, Hope you are doing ok. I tried the domeperidone and it did nothing for me. I could not maintain my weight either, and am also on TPN. How about you with the nausea/ vomiting issue. Which do you have more of? Are you considering the Pacemaker?

Take Care, and look forward to hearing from you.

Rhonda

By twin
Posted December 20, 2007 at 11:44 am

Hi Rhonda,

I still struggle daily with the eating thing.. Because of the way they fixed my hernia, I am unable to throw up, which I wish I could,... but hearing everyone's story on this site I know how terrible that is for them and their health. I get very bloated and very full even at eating the tinest thing and I mean tiny.. I have struggled with pain, but have gotten things to manage it, sometimes. The nausea is a little better since the pacer surgery, I would say it's about 40% better for me. I am also taking this chinese herbs that my doc. read about in this journal, He said what do I have to lose.. They do help calm my stomach. I have also learned through this process, how important it is to have a doctor who knows alot about the pacer and how to program it. It takes time and expertise, I have had a few problems with that part. I've had to meet the Medtronix people at the hospital several times to help get my settings right. So I've learned to be patient it is after all a machine, and as we know we are all different. Take care, Karry

By twin
Posted December 20, 2007 at 4:42 pm

Hi Deb,

They determined that the nerve was damaged because I was so sick and was not able to eat and was losing weight, ( which at the time was quite nice) I had the emptying test preformed and that can back not good. ... since i have lost 75 pounds and slowly continue.. The potential nerve damage was a posible side effect due to the fact that the hernia repair was so extensive, so they say, I didn't seek legal action, I always do wonder what that surgeon is up too? He move to NC soon after my surgery. I'm not on TPN now, I know that this disease is so stressful for all of us, we just get so sick of being sick! Take care and know that we all think about one another. Karry

By Sissy1
Posted December 20, 2007 at 11:02 pm

Karry,

I am sorry you are unable to throw up. Your story may have helped me though. In one of the test that was done on me, they said I have a small hiatal hernia. I wonder if that is why, at times,
when I want to throw up, just to get some relief, I can't do it. Nothing will come out. Very interesting. I am glad the Pacer gives you some relief from the nausea. So even with the pacemaker you get bad bloating and can only eat tiny amounts of food. I was hoping the Pacemaker would help with that, if it was going to make my stomach muscles work better. I know
they talk mostly about it helping your vomiting and nausea, but I figured thats because it keeps the stomach getting backed up. I better talk to my Dr. some more. Talk to ya soon. Thanks for the info. Keep in touch.

Rhonda

By JenD
Posted December 22, 2007 at 12:51 pm

Hi Rhonda,

I'm sorry that you are dealing with this too. I am nauseated most of the time but I haven't thrown up or had to "vent" my g-tube since starting the domperidone. In fact I am now able to get about 800 calories by mouth a day on the domperidone. while before I was almost constantly vomiting or retching and unable to keep down even water. All my medicines had to go through the j-tube or IV. I currently cannot tolerate j-tube feedings well so I am on home TPN via PICC. I am not considering the pacer at this time because I almost died from the surgeries to place my tubes and I am still recovering from those surgeries. My doctors also think that it may be difficult to put the pacer in correctly because of my anatomy. I have a portion of my intestine that is wrapped across my stomach so they are worried about perforating my bowel during surgery.

You can read more about me on my website at: http://neuronswithdystonia.blogspot.com

Good luck to you.
-Jen

By sjuhas
Posted January 4, 2008 at 10:17 am

jen
how long did it take the domperione to work. ive been on it for 7 days and i havent eaten a thing. Im so naseous and throiwng up i feel so sad!
Sherri

By JenD
Posted January 4, 2008 at 10:24 am

It worked within a couple days for me, but some people have to stay on it for a while to get the benefits. I also have noticed increasing improvement over time, so I think it does build up in your system and it may be that you just need to give it more time. It may also help to try a higher dose. I am currently taking 10mg 4 times a day but I know that some people take 20mg 4 times a day. I also helps if you take it about a half an hour before you are going to try eating. If you take food with it or eat right after taking it then it doesn't really work very well. I hope this is helpful to you and I hope it kicks in and starts helping you.

Hang in there.
-Jen

By sjuhas
Posted January 4, 2008 at 12:14 pm

jen
Thanks I called dr, he changed it. I hope it helps. Do you think I will feel something?? It's terrible::( Do u have good days as well?
Sherri

By JenD
Posted January 4, 2008 at 12:40 pm

I feel nauseated most of the time and I usually don't really feel like eating. For me the domperidone did not magically make me feel normal. I still feel sick, but with the domperidone I feel a little better and I don't vomit when I do eat. You should take a domperidone and then about 30 minutes later try to eat something easy (I eat baby foods or very soft bland foods like mashed potato). For me it stays down. I often still feel sick after eating but I can keep it down now if I take the domperidone and sit quietly for about an hour or so after eating. You have to be easy on yourself and your tummy. Domperidone is certainly not a cure for me, but it allows me to get in between 500 to about 800 calories a day which is much better than nothing which is where I was before I started the drug.

You said the doc changed your script or something? Did he increase your dose?

Yes I have good days and bad days. On good days I may get in between 800-1000 calories if I'm lucky. On bad days it is more like 400 to 500 which isn't very much. I stil use my g-tube for venting if I get really sick from eating and just can't keep it down, but that doesn't happen all the time now that I'm on the domperidone.

I hope this is helpful to you.
Take care,
Jen

1
2
Next >

Add to the discussion

Search

Find information and discussion about health topics in 228,508 posts by members like yourself. Learn more...

Join

Join safe, secure groups sponsored by trusted organizations that care about your health. Learn more...

Connect

Connect with 61,696 members and make friends who share your interests, learn about conditions and treatments, find support and more. Learn more...