Question about Eating

Whisperingdays
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I just joined about a week ago and I have learned alot. I was diagnosed with Severe Idiopathic GP about 5 weeks ago with only alittle over 20% of my stomach being able to function, but I know that I have had it for 2 years and in that 2 years I have progressively gotten worse.

One of the things that I have noticed is on days that I am able to eat alittle bit of food, that my best intake of food is in the morning and from there on the rest of the day my tolerance for any soft foods gets unbearable and by dinner I am down to very little food if any and mostly only able to drink alittle bit of liquid at a time.

I do throw up but not all the time, I fight it with every ounce of my being, but I am continuously nauseated and sick with extremely alot of pain and bloating. I also have to be very careful with bending over or turning around to quickly, even turning in bed or getting out of bed to quickly as I get very dizzy and have gotten very close to passing out if not for a second and have been lucky enough to catch myself as well.

I was wondering if this is something that any of you go thru on a daily basis as well with your food? I just came out of a very bad weekend and still I'm losing more weight which is really making me nervous. The constant responses from others about, Wow, you are really thin aren't you eating?... and you really need to gain weight, can't you drink more protein shakes or something, are getting hard to handle at times and I just don't have the energy or the want to explain what is going on with me to every person I know .

I am suppose to be a caregiver and although no matter how hard I fight it is getting harder and harder to give yourself to others holisticly as I do ( I am a massage therapist), when I feel so aweful. I have cut my hours down to two days a week as I can barely handle that now and putting on a front for your clients has just gotten so tough.. I just don't know how much longer I can work with not being able to eat and feel normal. I am still a fighter, but I am just in abit of a low atm.

I am still waiting on my medication to get here, its taking along time to get it from India.

11 replies

Trixie617

Hello - I am sorry to hear that you are struggling. I wrestle with the same issues (as most of us here do). When I began to lose weight I really didn't have any extra weight to lose. I get the same comments about being skinny & people encouraging me to eat, even offering me food. My biggest concern is that my daughter who is young and impressionable will end up with an eating disorder. Kids listen to what you say -- but more importantly, they watch what you are doing. And mom is not/rarely eating meals with the family. And when she does it is not what everyone else is eating. Well, enough of that. I know that we are all battling this issue in our own way -- I just pray that you can be good to yourself, and your body & that there will be better days ahead. Don't give up.

Just an afterthought, do you use a juicer? It has saved my life. Allows me to drink all my fruits & veggies without preservatives, added salt or sugars or colors. Provides vitamins, minerals, & enzymes for digestion -- just a thought. I greatly reduced my bloating and associated pain.

Kate1
  • By Kate1
  • Posted May 6, 2008 at 10:57 am

Hi, there. I also have GP and I often have a hard time bending, standing, sitting up quickly, or doing any other abrupt movement. It frequently brings on dizziness and/or makes the nausea much worse. I can understand the nausea, but I don't know what the dizziness is about (and neither does my doctor). Now that my weight isn't so bad and I can usually eat these days, I have no idea why I get dizzy so often. Also, my ability to eat fluctuates quite a bit throughout the day, as well.

I am also struggling with being out of work right now. I fought so hard for so long to keep working despite a lot of health problems (mostly digestion-related), but I finally had to go on medical leave and have been out for just about 3 months. I am having a hard time accepting being out of work, and I'm not sure when I will try to go back. I was working as a mental health counselor, and I know what you mean about trying to put on a front and hold it together when you're with a client. You are there for them, and you cannot let your own issues shine through. This is so hard when you can hardly eat, and you are trying to cope with the pain, nausea, weakness, dizziness, malnutrition, and other digestive issues.

I was also curious as to what medication you are receiving from India. Is it something specifically for GP, or is it for something else?

Keep us posted on how you are doing.

Take care,
Kate

Whisperingdays

Thanks for responding. I don't juice, but I do take this supplement called Perfect foods. It has every veggie and minerals you need for your daily consumption and it is made from Garden of Life. I don't always do that well with it but I try and drink it as much as I can handle. I also take one ounce of aloe vera juice stomach strength with one ounce of papaya juice and a tablespoon of liquid vitamins mixed together everyday and sometimes I can keep all that down in a day and sometimes I can't. But it just doesn't seem to be enough.

Even though I only recently was diagnosed. There is a big difference actually finding out that you have something wrong with you, that for the most part there is no cure for. Learning to cope with it is challenging in itself. (I know that I am not saying anything that we all don't feel). I know that I am still very much in fear of this desease and I know we all have our moments, I just wish I could start getting a grip and stop having so many moments of doubt.

I know that there are many of you that have it alot worse then I do and your strength is what is keeping me pushing forward too, as reading on here has been a godsend for sure.

Kate, the medication I am waiting for is Mosapride. I was first on Erthromyacin which only worked for a few days with alot of side effects. Then the doctor wrote me a RX for Cisapride which we were able to get from Canada via India 10 mgs. I started taking it and had alot of bad side effects on it so after several days I stopped taking it, but then I realized how it was helping with my GP despite the side effects, so the doctor said to cut it down to 5mg. That has helped with the side effects but it isn't enough to help me with the GP.

I am waiting for Mosapride. It was invented in Japan by a very reputable company. It is a stem off of Cisapride but it works differently and without alot of the bad side effects. From all the reading my husband and I have done on this drug there has been no deaths from this drug! So I am really hoping that this could be the answer for me with this disease. I did ask the doctor about the Domperidome but he didn't seem to think that it would help me. But that doesn't mean I wouldn't try it if the other doesn't help me. I am glad you are getting some relief with it.

Are all the different effects my body is going thru, possibly just the beginning of more to come with this disease? With the dizziness, the motility problems with swallowing infrequent bowel movements etc..?

msmac
  • By msmac
  • Posted May 6, 2008 at 2:42 pm

Hi, I am sorry you have gp. I do too. I learned most of what I needed through the website g-pact. They also have a huge membership on their site through gastroparesis@yahoo.groups
that have members that will answer any question you may have and provide tips and will be there when you need them. It is worth checking out. I am just a new member here, but have belonged to the other group for a while now.
Also, g-pact has posted recommended diets based on the amount of food you can empty. Many of us there are also on feeding tubes and belong to Oley. Feel free to email me anytime.

msmac
  • By msmac
  • Posted May 6, 2008 at 2:45 pm

I did forget to ask what med you have sent to India for. Many of us on the other site, including myself, get domperidone from inhousepharmacy.com. It is cheaper and comes from the manufacture. Just thought I would mention it to you since I forgot to before. You aren't alone, there are many of us there with you.

msmac
  • By msmac
  • Posted May 6, 2008 at 2:47 pm

HI, I have requested you as a friend so that I could more directly reply. Hope to hear from you soon, a new friend and my trusty guide dog

msmac
  • By msmac
  • Posted May 6, 2008 at 2:49 pm

V8 Splash is great, full of vegies and fruit, but you only taste the fruit. Another item that helped me is a Magic Bullet. This blender makes every bit of meat a powder so you can mix it in with creamy mashed potatoes, etc. Greatest little machine I have used.

msmac
  • By msmac
  • Posted May 6, 2008 at 2:52 pm

I thought I would tell you that prior to my j-tube and stomach surgery a month ago, I went through 5 months of dizziness. I learned through my other support group to purchase glucose tablets over the counter and when I was dizzy, I chewed one. Made me all better. Doctor told me it was due to malnutrition and drop in blood sugar. Ask your doctors about that suggestion,

Whisperingdays

Msmac, thank you for your suggestions. I really appreciate it. I am going to see the GI doctor on the 15th of this month so I am going to have alot more questions for him. I just hope he has answers for me. I think I will try the glucose tablets. They couldn't hurt and if they help then all the better, at least til I see what the docs opinion will be.

The medicaton I am waiting for is Mosapride.

msmac
  • By msmac
  • Posted May 7, 2008 at 9:24 pm

Glad I was able to have something to suggest. I hope it works for you. I have just turned on the computer for today, so I haven't posted anything yet. I am having a difficult time trying to figure out how to post and read what others have posted. I will keep trying to learn. Have a good tummy night,

maryfend
  • By maryfend
  • Posted May 10, 2008 at 11:48 am

Hello My fellow Gp friend! I can sooo sympathize with you! I was dx'd a little over a year ago with Gp! I also have Ibs-c! I was 197 lbs before I was dx'd! I now weigh 147 lbs! My lowest was at 138 lbs! Iam 5'9" tall! I don't know that I'd be labeled severe, maybe moderate Gp! The groups i belong to is this one and gpawarenessfund.com It has been my life saver since being dx'd! If you ever want to chat feel free to email me offline! I live in Oregon and would love to get a Gp group started here! Hang tough! Pray for a cure!

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