Mosapride-TPN-Marinol

I went to see the Gi doctor this past thursday. My first visit since I was diagnosed almost 2 months ago. It was a tough visit for me again.

My weight had dropped 6 more pounds and at 5'9" I am now down to 119 1/2. My normal weight is usually 140-145. I have not seen that weight now for 2 years.

He has set a cut off weight for me unless I feel I need it sooner, he will be putting me in the hospital and doing a TPN on me and monitoring me for 2 days he said then they will keep it on me to use at night at home for 2 weeks or so til he feels he can take it off of me. He said that if I continue to keep losing after or during the TPN he would make it a more permanent thing The thought of this just upsets me to no end. I know I shouldn't feel this way when I know so many of you have been doing this and have tubes in you to help you get the nutrition you need. I am still so new to this new life that I have been dealt to deal with that I would just like some guidance. I hate to complain but I think I am just plain scared and want to know if this helps alot of you and what to expect from it with my daily life and trying to work. I know he said I would feed at night with it while I was sleeping. Where do they put the IV so you can go about your daily routine without having to answer questions from others?

I received the Mosapride and have been on it for over a week. The doctor was very happy that I got it and even did research on it as per our request from my first visit of diagnosis. He is being very supportive and wants to do everything he can to help me live as much of a comfortable like as I can with the GP. He has me on 15 mg. 3x's a day before each meal. I have to say that it has helps sooo much with the pain but I am still having a hard time with the food, but the last couple of days I have been able to eat alittle more without to much bloating but I am still very nauseated and the sick sour feelings I have in my stomach drive me crazy on top of the headaches. He wants me to stay on this for 3 months to give it a fair chance as he said it is a stepping stone on how this drug works overtime.

I did talk to him about my swallowing, bowels and urnine problems and he said that it is all part of the GP. He did tell me that unfortunetly that alot of the motility drugs only help the upper part of your GI intestinal problems and not so much on the lower. Although the Mosapride has helped me with my swallowing to a digree the rest of it is about the same except that the Mosapride has let me have a bowel movement about every 2 to 3 days verus longer without it. My ability to push is almost void though. If things continue to get worse with all of this he will do some more test to check out my motility for theses problems. I also have neuropathy in my legs and got that around the time I feel I got the GP I often wonder if this is part of it. I am not diabetic. But getting answers from doctors are impossible when they have no clue as I gave up on a neurologist because of this. Do any of you have this problem as well with the GP?

Another one of my questions is that he put me on a drug called Marinol. I don't know how many of you know about this drug or if any of you are taking it or have in the past. But I want to know if it has helped any of you. The main ingredient is based off THC from marajuana plant. His purpose of putting me on this is to help to stimulate my appetite and to help with the nausea that is so bad for me. There is no way I can take this drug and function during the day normally as it makes me very uforic. It is also a very expensive drug even with insurance. Any feedback on this would be great.
I know I am asking alot of questions and I thank you all in advance for any help you can offer me.

Whispper

By chewy1
Posted May 18, 2008 at 2:30 pm
Report post

Whisper,
I have been using Marinol for a couple of years now. My prescription is written where I can take it every 6 hours as needed but I don't have to take it that often. I try to use my Phenergan or Zofran first and then if I can't get the nausea and vomiting under control I will take Marinol.
Marinol does work well for me as far as stopping the vomiting. It has its drawbacks too...it causes me to lose my ability to concentrate even to the point of not being able to complete a sentence when talking. It also makes me sleepy. It does stimulate the appetite which is good and bad. I get too confident when i start getting hungry and will eat more than I should and that oftens causes the nausea to increase again.
I'm glad I have Marinol and I consider it my security blanket because I know I can always fall back on it if nothing else is working.
I don't have any experiences with TPN so I can't help you on that topic.
I can say that your other problems do seem to be very common with most people who have motility disorders. When I first was diagnosed with GP, the nausea and vomiting were my main symtoms but as time as gone by other parts of my body have become involved too...I now have problems with severe constipation and urinary problems (which have both been diagnosed as a pelvic floor dysfunction), migraines (I've had those since I was 12 but they have become so frequent that it is a big problem), pain, vision problems (diagnosed as Adies Tonic Pupil), now I've become diabetic (I wasn't until this past year so it was not the cause of my GP), tingling and numbness in my hands...and most recently difficulty swallowing and terrible reflux (which I will be having more tests for that in a week). Before I went to Mayo, most of the doctors I saw would say the different things were not related but my GI doc at Mayo said they are definitley connected and appear to be caused by damage to the autonomic nervous system.
I hope that things get better for you and that you won't have to do the TPN. I do think trying the Marinol wouldn't be a bad idea...just start with a low dose and work up. I'm taking 5 mg. two or three times a day when I need it. I started at 2 mg. Also make sure that you are not needing to be alert and making decisions until you see how it effects your thinking process. I try to just go to bed when I take it.
Good luck,
Judy

By Whisperingdays
Posted May 18, 2008 at 3:41 pm
Report post

Thanks Judy,
He put me on 2.5 mgs of the Marinol. the first time I took it was early evening and I got so high from it. I was almost panicky cause I felt I was losing control. I agree there would be no-way that I could take this and work let alone drive. I would assume then your body builds up a resistance to it so that you can handle it better? I also noticed that I woke up with a bad headache hangover from it.

I will try and take it again tonight before bedtime and try it the way you did. I, like you don't think I will take it on a regular basis but I do think I will call him and ask him for something that maybe isn't as strong and just take it for the unbearable days. But for now I will make sure I take precautions on eating when I do take it.
How well does the Phenergan work in the since of being in control and the nausea and vomitting?

By chewy1
Posted May 18, 2008 at 4:38 pm
Report post

I completely know the feeling you are talking about in not feeling like you are in control of yourself after taking the Marinol. I have described it that exact way to people before and it is kind of scary. But, if it helps stop the nausea and vomiting on bad days it is worth it.
Phenergan does take the edge off the nausea on most days and helps keep me for vomiting as often. It does make me sleepy at times but I'm still able to function fairly normally (as normal as someone can get with the GP).
I think you do build up a resistant for the Marinol after awhile if you use it frequently...it will still help with the nausea and vomiting but I notice that if I've taken it several days in a row it doesn't seem to effect my mental status as much...but that is one reason I don't want to take it as a everyday thing...I'm afraid it will quit helping the nausea eventually if my body gets so adjusted to it.
Judy

By Char
Posted May 18, 2008 at 5:45 pm
Report post

I understand what you were saying about not wanting to have to be on the TPN. I hate the feeling of knowing I'm dependent on my tube feeds or TPN when I was on that. I don't know if I could really explain the feeling, but just knowing I can't keep my body going on my own without it will get to me from time to time. It should help you feel stronger though. Also, it will keep you better hydrated and dehydration will cause more nausea and headaches.
Where the iv line is depends of what kind of line they put in you. PICC lines are in your arms, mine were always on the inside of my upper arms, but I've seen them as low as around the elbow. Hickmans are in your chest, and has lines hanging out, but I had some that weren't even noticable if you weren't looking for it. It also depends on the type of shirt you have on. Now I have a port-a-cath, and it is in the chest, completly under the skin. To use it you have to have a needle inserted that will stay in for up to a week and it has the line coming from it. When there isn't a needle in it, it is just a rise in the skin, but if you are on TPN every night you would probably keep your needle in, you wouldn't want to have to have it accessed every day.
I'm on Marinol now. I've been in the hospital for a little over a month now, and they started me on it a few days after I came in at 2.5mg once a day and slowly increased it. One day they increased it a little to fast and I was pretty out of it early on in the day, but since then I haven't had a problem of it making me tired or anything like that. I'm now on 5 mg 3x's a day. I think it has helped with my nausea. I'm on Zofran and Phenergan, and they help take the edge off the nausea, so throwing the Marinol in there too has helped during this last bad spell that I've had. I'm hopefully getting out tomorrow and I'm going to try weaning down the Marinol and hopefully be able to not have to take it very often and save it for when I have a bad spell. You're right, it does have one of the more expensive copays. They already sent my rx's and my mom picked it up Friday and said it was pretty expensive.
I hope you can find something that works for you so you can avoid TPN or at least not have to be on it for very long.
Char

By Whisperingdays
Posted May 18, 2008 at 8:50 pm
Report post

Char, Explaining it the way you did, doesn't seem so bad, I guess I just feel that getting the TPN is another step towards my dependency of survival from this desease and another step from not feeling normal and it adding to the every second reminder of my days about having GP. If that makes since.

You have been through so much, and I need to take your strength and your hardships and keep it in mind when I am feeling down about my health. I really hope you get to come home tomorrow. I guess that no matter how mild or severe we have a illness or desease it is still hard to cope with it, as we all try to do the best that we can but we will always have our days of downward defeat.

The GI doctor also talked to me about the port-a-cath, but I will cross that bridge if I get to it, but I will do everything I can to try and not get to that. My husband wishes I would just call the doctor and have him put me in the hosptial and get the TPN now but he just doesn't really understand what that means to me to have to get it, but I know that you all do.

The stubborn side of me is fighting so hard as I am just sick of going in the hospital and I can't even imagine how you must feel.

As for the Marinol it is good to know that you and Judy are also on this drug. It sure is an interesting drug. If you both can take it I guess I can certainly give it a fair shot.

By Charlotte1
Posted May 19, 2008 at 1:43 am
Report post

Whisperingdays,

I am sorry you are having so many struggles currently.

During my last hospitalization I was on TPN and it made all the difference in the world regarding my strenght. I have not been able to eat properly since Aug of 2007. The few days that I was on TPN definately help put the fight back in me. I have been on TPN at other times after surgery and also became septic from the lines. I currently have a Hickman and I make sure that anyone touching it has washed their hands in front of me. I do not let them just grab gloves. The last time I was septic temp on 105.8 and I was put on a cooling mattress. Water flowing thru the mattress with the temperature of 42 degrees. It felt like a torture chamber.

I have extreme nausea but have not tried Marinol. My doctor is very conservative so that is something that I do not think he will try.

Wispper, I hope I have answered some of your questions. Please feel free to ask anything, I will do my best to answer or help find the answers.

You are in my prayers,

Charlotte

By JenD
Posted May 19, 2008 at 10:25 am
Report post

I have been on home TPN for almost 6 months now and it has literally saved my life and made me feel so much more like I did before GP. There are many many people who live on TPN successfully. Please go to http://www.oley.org and read some of the personal stories about TPN. There is one woman on the site who has been TPN dependent for 40 years and even had twin boys while she was on TPN. I think it will help you a lot to read some of these stories. TPN is doable, you just have to be careful with your port and lines and make sure others are careful too. I hook up the line in the evenings run it for 12 hours and then unhook in the morning. I have had my PICC line for 6 months and so far I have not had any major problems. If you get a PICC it goes into your upper arm and you can just wear a sleeve over it to keep it clean and dry. One of the biggest risks of infection is if your arm gets wet.

Regarding Marinol…I have been on it for a few months now. I quit taking it during the day because it was making me randomly fall asleep and really spacey. Now I take it in the late afternoon and it helps me eat some dinner and evening snack. I find that it doesn’t really help with the GP itself, but it does help with the nausea and makes you a little more willing to eat. For nausea I use Zofran. I can’t take any other antinausea drugs because I have generalized dystonia and they can cause me to have dystonic attacks that are similar to seizures only I am conscious. Zofran comes in sublingual forms that dissolve in your mouth so that you don’t have to take a pill.

I also have a j-tube and have tried tube feeding off and on, but it usually causes pain, bloating and vomiting so I tend not to try it much anymore. My GI really wants me to use it so that I can keep my gut working to some degree so I do it sometimes, but it usually makes me pretty sick and the TPN doesn’t. You should definitely try the tube feeding first if you haven’t. It is much better for your gut and safer (infection wise) compared to TPN if you can do it.

The other drug that has really helped me is domperidone. If you live in the US you have to have it shipped from Canada or another country, but it works really well for me. It has allowed me to be able to eat a little and to take pills which I could not do before I started on it. I would definitely suggest trying domperidone before TPN if you haven’t.

Good luck to you and please feel free to contact me if you have questions or just need to vent. Hang in there.

Take care,
Jen

By hajj
Posted May 19, 2008 at 12:12 pm
Report post

SORRY YOU ARE HAVING THIS DISEASE AND PROBLEMS MEDICALLY. I HAVE TAKEN MARINOL AND DONE SOME RESEARCH ON IT,IT IS EASY TO OVER DOSE WITH MARINOL AND DOES NOT HAVE THE SAME EFFECETS AS THE PLANT.yES IT WILL KNOCK YOU OUT SO BE CAREFUL IF YOU DRIVE.iT WILL GET RID OF FOR THE MOST PART THE NASEAU AND LET YOU EAT SOMETHING TO KEEP UP NUTRITION.lIKE YOU i CAN'T TAKE IT DURING THE DAY TIME AS IT WILL KNOCK ME OUT.iF YOU HAVE A COMPUTER LOOK UP MARINOL AND IT WILL GIVE YOU MORE DETAIL ON THE DRUG.iT IS SO NICE TO BEABLE TO GET THE SUPPORT FROM THIS GROUP AS ALL OF US WITH THIS DISEASE NEED.

By Trixie617
Posted May 19, 2008 at 12:14 pm
Report post

Whisperingdays -

I can empathize with your current struggles as well. I too am very newly diagnosed and like you, my GI has set a weight loss cut off. I am 5'7" and am @ 110 lbs. I don't have any experience with Marinol, or TPN, but I had a port-a-cath for my chemotherapy. It was a life saver. I have had picc lines for chemo as well & found the port less of a hassle. No open lines to flush, and less risk of infections. My port was placed just under my right clavical. I had a three year old & 5 week old at the time & the port posed no interference with my ability to care for them, nor did it show under my clothes. Hope this helps when & if you are faced with a decision to make.

Trixie

By Whisperingdays
Posted May 19, 2008 at 11:12 pm
Report post

I really appreciate all of your help. One of the good things that I read about the marinol is that it isn't addicting to the body, so that is a good thing. I am thankful that I have it . Even though the GI doctor wanted me to take it twice aday. I will only take it when I know I will be home and don't need to function per say, when days are so bad.

Jen, the website that you linked for me is very helpful thank you. The Mosapride I am taking I got from Canada via India and it took awhile for me to get it. But when talking to the doctor about the various drugs his first pick was Cisapride which I did get the same way I got the Mosapride but the side effects stopped me taking that. This Mosapride I am on now he feels will be more effective for me then the domperidone, as it is a stem off the Cisapride minus the side effects and the safety record of this drug is great. If this doesn't work that will be my next try for sure.
I wish that we didn't have to get our drugs out of the country to be able to find something that might help us. I just don't understand why our FDA doesn't allow certain drugs in our country when they help so many people. I feel like alot of it just comes down to money and greed on our government parts. So sad.

My Gi doctor told me that I was the second worse patient that they had in there practice of 6 doctors with GP. That didn't make me happy, and it also told me that they have not had to deal with any patients that are alot worse off then I am. Im not quite sure what to think about that other then alittle upsetting and that I may find myself heading to Mayo clinic in Jacksonville, Fl. in the near future. Many hugs to all of you.

Whispper

By SeussRN1
Posted May 21, 2008 at 10:46 pm
Report post

I have been on TPN and it was a life saver. I had a 3 yr remission of my GP and all was gonig great - I even ate real food and took no medications. Then I got a kidney stone and it all went down hill from there. I lost 30lbs and muslce in 6 weeks - I even looked scary to me! So I spent a yr on tpn, things got better and I weaned of the tpn, had my PICC line removed and my feeding tube. Unfortunaltely as we all know GP runs by its own rules. So I ate easter dinner and that is the last meal I have eaten. I am back on TPN again and none to happy about it. It has been a struggle every night to be the good patient and hook up to the ball and chain - mostly because of my frustration with it. The insurance company has 3 more weeks (not that I am counting ;0) to determine if I can get the pace maker. I currently use Zofran 8mg IV (put it in my PICC line) every 4-6 hours it takes the edge off and makes the nausea tolerable. I am unable to tolerate any pills - so the allergy season has been adventurous to say the least. Even a simple tylenol will not stay down. In the past I have tried Marional 2.5 mg didn't help the nausea and when I increased it to 5 mg - I was out cold for hours.

It is scary to be on TPN, even for me with my nursing knowledge. I am very particular who and how the dressing gets changed and right now have a great home health nurse and pharmist who adjusts my TPN and works with me on the hours it runs. I orginally started out at 16 hours - but I do need to get a job so we adjusted to 12 hours since I was able to take more fluids in.

The TPN doesn't really interfere with my day to day activities I run it at night and if I have to I just lug it around. I have been out to eat (not that I eat anything - but a girl has to socialize!), to bars, concerts.

I would have to say that the only thing that keeps me going are determination ( I am a stubburn redhead) and my family and great friends. I use a lot of humor and poke fun at myself - but that is my way to deal with this thing. My ultimate goal is to start a support group here in my city.

Keep your head and never give up!
Beth

By WriteMeWell
Posted June 1, 2008 at 10:21 am
Report post

Whisper- I'm curious and excited about all the good things I keep reading about Mosapride (haven't talked to my GI MD about it yet). Is it something we can buy over the internet? Do you need a prescription? Is it pricey?

-Thanks

Welcome to Inspire!

Explore topics in this discussion:

12 replies

Add to the discussion

AGMD on Twitter

Group leaders

You