dealing gastroparesis

I am 43 years old and have been diagnosed for 4 years now with gastroparesis ... my food intake is severely limited ... I cannot do anything with high fat more than 6 grams seems to be a good number - I cannot eat much meat - small amounts of chicken, lobster, shrimp and whitefish all cooked plainly is ok - salads and dairy product - forget it .. I die and bloat out in pain all the way through my back - I just went through a angiogram and all the heart stress test because I now have severe chest pains and hard time breathing especially if I want to walk and talk at the same time ... go figure - the test showed no problems with the heart, so now we are going to look at the esophogus ... things seem to be worse as the years go on - my body aches - no real strength - very dizzy and even faint from time to time .... I am a mother of 6 and wonder how much longer do I have before I just can't do anything anymore - I am a super strong woman and a hard worker - I don't like to sit still and don't - I have an extremely active family life - but boy when the day is over I feel as if I can't move if I wanted to ... How can I feel like 43 and not like 80?
Well - someone told me to find someone who is dealing with the same sorts of things to talk to - to maybe help my mental strength ... I'd love to talk to anyone who is managing through this weird diagnosis

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Hi Tammy,
Welcome to the group. We are all happy to talk to you and comiserate with you. I have been fighting this for about 2 years now. I used to be very active. Now it is all I can do to get through the days some days. On the good days I push myself to get as much as I can done. And I have learned to quit beating myself up over the bad days. 6 kids is a lot for a healthy mother to handle. My heart goes out to you. I hope that at least some of the kids are old enough to help with the little ones and the household. I was one of six kids and we were raised with chores and responsibilities starting when we were very small. I think it did help me adjust to the adult world better then my friends who didn't have any chores or responsibilities.
My advice to to be good to yourself and allow yourself the bad days. And celebrate the good days. I find I get sicker if I try to do to much on the bad days. I am glad you are able to tolerate some chicken and fish.
I used to live on huge salads and raw fruit and steamed vegetables. Now it's V8 and fruit juice mixed with soy protien powder. And some days I can tolerate cashew nuts.
I am 49 and feel like 80 most of the time too. I know many people in thier 80s (I live in Florida) that are way healthier then I am. But some days I do feel young.
I work hard on my positive attitude and take great encouragement from the people here.
Nancy

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Hi Tammy
My Girls are grown so I don't have the problem you have with childern. But as Nancy said try to get your childern and I hope you have a supportive husband to help. I am on so much medication I fall asleeep on a 25 min drive. Which is how for I go to the doctor Pharmacy and almost anything I would like to do. Therefor, I even have to rely on my husband to drive me. We have to learn to ask for help. As a mom who has always done for everyone else it is hard. I know we all hate asking for help. But, others do want to help. I know my real job is to accept it with out feeling angree. THe angrer is mostly at my self and the way I feel. I am only 53 and it seems to me that my 84 year old maother and father- inlaw get around better tahn I do. They are not in pain all the time and can eat.
Good luck and I hope it helps to know others are going through this. This is a place you can vent.
Lydia

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Thanks so much - I am so happy I found this site --- I have more days with pain than not- but I push through it - most people say you look great you must be feeling better - I am assuming being a size 4 now disguises the pain I am in -- I always try to fake it on the outside trying to look my best - I hate that I don't have the strength to exercise like I use to - taking care of all my gardens, housework and keeping up with the kids is a huge toll - so no more workouts for me ... I find it difficult to take time for myself - with six children - I have one planning a wedding, one in college, two talented and gifted which I teach extra after school to keep them learning at the higher levels they need - then an 8 year old who has complex partial seizures so I keep him home in the morning and teach most of his curriculum and send him to school for 2 hours in the afternoon plus a little feisty six year old - then they all start up at three with snacks, music, homework and sports ... dinner and bed - I am so worn out it is hard to just drive them around - but we manage somehow - It worries me, as I see it worries others - how much can a person take of this - four years has been quite long enough - but I want to be a grandmother and watch all of my children grow and come into themselves ... my biggest fear is this sickness will take that dream away from me ... that is where I am at just trying to stay positive and hope for the best ... am so glad to have read that people feel the same way - the pains, the way one food is okay one week and not the very next day - the exhaustion - now I am dealing with breathlessness - and fainting spells - I guess it could all be from trying to be my old self never sitting.
Well thanks to everyone out there who is listening and sharing ... I finally feel like I can be heard without being looked at like I am speaking a foreign language... LOL

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I have similar issues. For the first time I was given a really thorough blood workup. I have no production of B12, Leukopenia. This causes autoimmunity issues which, in my case correlate with motility issues, or so it seems. Clear correlation has been established. Also, I use Mylanta 1000 to knock bach episodes, only that strength works for me, TUMS 1000 is my second best freind.

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Dear Tammy,
Boy, could I relate to you. I am a mother of 7 (3 at home-ages 9, 12 and 17) and have always been considered to be close to a work-aholic. I've homeschooled my bunch since the oldest (33) was in 5th grade. I'm also a busy pastor's wife.
I became gravely ill this spring with Clostridium difficile and pancreatitis and have had terrible RUQ pain every since then.
I was diagnosed with gastroparesis shortly after but just can't get over the terrible pain in my right side and through to the back. (and on bad days up to the neck and into my head)
One of my greatest frustrations is the doctor saying that gastroparesis shouldn't cause the kind of pain I'm suffering. I read online about many with gastroparesis that have the pain that radiates through to their back.
My doctor says pain medication will make the motility worse but then in the same conversation he tells me that I have little to no motility.
I just recently had two days where it knocked me flat and he asked me what I took for the pain! Nothing- I suffered through it because he told me not to take pain medication!
I can't decide if I'm suffering worse with this illness or the medical treatment.
I'm 53 and try to make it one day at a time. Most days I keep a chin-up attitude and then some days I need to come to a place like this to remind myself I'm not alone.
Hope you get the help you need with those who can relate to your frustration.
Tami

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Tami, My doctor told me that our stomachs process liquid differently from solids and can almost always process a liquid even when the motility isn't there for a solid. When your pain is very bad, could you take a pain medication and go on a liquid diet? Make smoothies &/or soup (just keep the fiber & fat low)? I don't really know, it's just a suugestion.

Tammycelina,

Has your doctor given you a copy of the gastroparesis diet? (Salads aren't on it)

Here are some links to articles that do a good job of explaining the diet that we can most easily eat. Each has some slightly different hints. You'll note there are
three levels of the diet. Most the time I'm on solid food, but when I have bad days I go back to the simpler or all the way back to a liquid diet for a few days.
http://www.gicare.com/pated/edtgs08.htm

http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/dm -gastroparesis.pdf


http://www.healthsystem.virginia.edu/internet/digestive-health/nutrition/GA STROPARESIS-DIET.pdf

Also, have you looked into getting liquid vitamins to help make sure you're getting the nutrients you need? After I started all my liquid vitamins, a greens supplement and probiotics, it took about a month or so but I got my energy back (as long as I get a decent amount of sleep). You might look into it. Our bodies don't process vitamin pills well any more.

I hope you start feeling better soon.

Jo

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thank you Jo, that was a great deal of information - I will try some of the suggestions ... to be honest I am not so hip on the blending of meats ... LOL
I appreciate your time in sending these links. I will copy them and refer back to them often.
Tammy

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I know what you mean. I know that mphotographer does it, but the very idea of pureed meat kicks in my gag reflex, and so I've never really made it there.

When I go back to "liquid" diets, I do smoothies with whey powder in them, and pudding, and yogurt (greek yogurt has a bunch of protein), & such like - not much help if you can't do dairy. (I can't do soy or I'd try the soy powder in soups like sweetpotato or mushroom soup), then I build up to ramen noodle soup, or mashed potatoes/mashed sweet potatoes, most Progresso soups (not Lentil or bean, for me), or eggs/cheese omelets, or quinoa (a grain with 23 grams of protein a cup), 1/2 a PBJ sandwich (jelly or honey, not jam). The frozen Stouffer's spinach souffle works well, too, & canned or frozen spinach/collards/mustard greens. When I go to work, I packed a lunch bag full of 1/2 c. containers of any of these things and ate one every two hours.

Eating protein regularly is important to me because I'm hypoglycemic & it keeps my blood sugar from crashing. I was having a horrible time with the GP & the hypoglycemia & shakes & cloudy mind until I saw a nutrittionist & then an integrative medicine doctor who specialized in nutrition.

Also I take a plant based enzyme that helps break down food in the stomach so it passes more easily to the intestine where it's absorbed as nutrients. Initially my doctor had me taking Bromelain, which breaks down proteins. Recently I've found Zy-gest in my local grocery store - it has a combination of enzymes that break down proteins, carbohydrates, and fat. I think it's helping a lot in my ability to eat solid food & more of it at a time.

A friend at church talked to me today and told me that he met a doctor that is working on making meat (pork, ham, steak, turkey) that people with "dead stomachs" can eat, intended for the elderly, but but my friend immediately thought of me and told him about me. I'm really hoping that the doctor figures out how to make it work, I used to love steak. It's been so long since I've had one!

Oh, & I also get an abdominal massage mixed with cranial sacral massage 1-2 times a month (at the integrative medicine center). The first time my stomach growled in over two years was during one of those sessions, and then for a full half hour afterwards! I don't know if you're open to that sort of thing, but you might want to consider it. Just know that most insurances won't cover anything listed as integrative medicine. (I figured I was saving money on food so I could pay for it.)

Jo

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Oh, & I forgot, other than yogurt type things, I'm now drinking Almond milk instead of regular milk, even on my Special K (high protein cereal that's easy to digest) or mixed in my smoothies. It tastes pretty good. It's not dairy - that might work for you. (I can't do soy milk.)

Jo

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I am also 43 years old and just this month diagnosed with gastroparesis. I only have one child-14 years old but have a very stressful career. I am the manager of a bank. At this time, I do not know the cause of my gastroparesis. My primary Dr. has ruled out diabetes, thyroid, and vitamin B12 and folic acid deficiency. I do not have an appointment to see a gastro Dr until next month. I was stunned when I got the news. I am a healthy, fit 43 year old young women. I am currently taking Reglan but do not like the way it makes me feel. I just placed an order for Iberogast and am due to receive my first order in a few days. I will stop the Reglan and try a more natural approach. The Reglan makes my sleepy and I am having terrible mood swings. I will also be consulting with my accupunturist to see if he can help too. If anyone out there has had breathing issues related to gastroparesis please let me know. Before I was diagnosed and put on Reglan I had reoccuring bronchial problems including pnuemonia this past April. These breathing problems prompted me to insist that my primary dr. find the root cause of the breathing problems. This led to upper gi, and gastro emptying study because I mentioned to him that acid reflux was occuring mainly at night. The gastro emptying study concluded that I have gastroparesis.

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Hi Alley,
Welcome to the group! I have had breathing problems and acid reflux. I started with a hiatal hernia that became a ruptured diaphram when I fell off a horse. That led to a collasped lung when my stomach and intestines moved up into my chest. When I had the surgery to repair the diaphram and rearrange the stomach and colon back to south of the diaphram the doc also did a nisson proceedure to prevent the acid reflux. Basically flipping the stomach upside down and tying it around the esophagus. Later I learned that I had no motility in my colon which I believe was a side affect from all the surgery. The surgeon had told me ahead of time that 10% of the people that have my surgery will have GP even if everything goes text book perfect which it did in my case. After I recoved from the surgery, my breathing was better when I am awake but I stop breathing almost as soon as I fall asleep. I have a C Pap machine that forces air into my lungs to keep me breathing when I am asleep. If I eat solids I tend to have breathing issues while I am awake. Because I have had insomia issues all my life the pulmanary doc believes I have always had sleep apnea. I think it is good that you are going to try as natural an aproach as possible to keeping yourself healthy. I am not a big fan of drugs but whatever it takes to make you feel the best you can. Personally I would dump a grocery bag of drugs into my system if that is what would make me feel better. My heart goes out to everyone here who does need more drugs and proceedures to make it through the day.
Although the past week or so hasn't been great, I do realize that what I am dealing with is a walk in the park compared to what most of you are going through! Warm hugs and pleasant thoughts to all my fellow GPers!
Nancy

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Hi,
I feel like I was reading something I wrote. Your symptoms are just like me. After all the heart testing they found a very large hiatal hernia. I had a third of my stomach in my chest. After they fixed the hernia, the chest pain and pressure and breathing problems went away, but I was left with the GP from nerve damage....This is such a difficult disease, I feel lucky that I can eat sometimes. Hang in there Karry

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Hi! I'm judy. I'm new to this group. I've been having a miserable time for over a month now. I've been diagnosed for almost 2 years, but I've had GERD [probably GP] for 8 or 9 years. I guess it's the stress of Christmas & knowing we'll be having family over. I have'nt been able to clean the way I need to. I'm scheduled for an ultrasound because my dr. thinks my liver is enlarged or I may have gall bladder problems. Has anyone else had this? It hurts so bad in my upper right quadrant. And people don't understand that you haven't been able to eat properly. I just don't have the energy to go anywhere for more than 2 hours. I wish we weren't all is this same boat together, but it's so good to know someone understands. I just got put on protonix & it seems to help the acid taste somewhat. How am I going to get thru Christmas tho?!! I sit here & cry just thinking about it.

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Hi Alley,

I hear you. I am a 38yr old professional female w/two young toddlers and am a single mother. I was healthy and now, bam, gastroparesis (diagnosised 12/19/08). I'm concerned about keeping up w/my high profile, high stress job (business analyst/pm for the top financial data vendor worldwide). The Reglan is making me sleepy, hard to find words, hard to pronounce words at times, and a bit forgetful and clumsy. I'm sure you know how one mistake at work...even a small one...has huge consequences. It's like walking a tightrope even if I were feeling fine. I'm interested in how the Iberogast might help. I'd appreciate it if you might let me know.


Thank you and all the best,
Heather

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My heart & prayers go out to you younger women & especially you with young kids. At least I'm 67 & have had a lot ot good years. On the other hand, I thought I had a lot more good years when I remarried 5& 1/2 years ago. Then I got this news [GP] 2 years ago. It really can stop you in your tracks at times. But I live for the good days, as a lot of us do. I'm lucky to have a wonderful man by my side [after 35 years of miserable marriage]. I guess you can say I'm not a quitter. Don't give up, any of you. I have a grand daughter going into medicine. Maybe she be our Jonas Salk. Don't give up!!! Gajudy

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Hi Alley,
Welcome. YOu will find this site so helpful with so many good people. Please beware of reglan. I was on it for my GP for over a year, and it damaged my vision. I stopped taking it a couple weeks ago and my vision is still bad. Blurry. And alot of dizziness. I never got the twitches that you hear from taking it, but it made my depression much worse to. So I would advise not to take it. It really messed me up.

My GP is pretty severe. I cant eat any vegetables either. But I can eat solids. I don't have the vomitin either. But the bloating is severe. I also have IBS-D, Gastritis, and I am Fructose intollorant. SO I cant eat fruits either. That basically leaves nothing. I can only manage to get down chicken, turkey, and fish. Forget steak and other meats. I tend to eat alot of pasta because it is easy to get down. Plus, I am Italian so I love it!
I am 42 years old and I feel like I am 80! We have alot in common. I have one child, a son, and he is 15. But I cant work because all of my problems are so severe.
I hope to talk to you again. and take care!
Trish

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Heather,
I apologize that it took me so long to reply. The holiday season really took it out of me. I empathize with what you are saying about fear of making mistakes at work. The reglan I am on makes me want to stay home and sleep. I have tried accupunture and a natural product from Germany called Iberogast. Iberogast has been used in Germany for 50+ years. I take the Iberogast in the morning before breakfast and have been able to reduce the number of Reglan pills to two per day.
I too cannot remember a thing. I have to write down everything or use my Outlook Calendar at work to remind me.
This illness is difficult to deal with because outwardly I look like a normal healthy individually but from the inside I feel like an old woman! I am only 43 years old and shouldn't feel this way. I will be seeing a gastro dr. for the first time on 1/13/09. I will update you after my visit.
Hang in there!

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Trish,
It is nice to find someone my age who feels the same way.
I have started taking a natural substance called Iberogast. It is from Germany and has been used there for over 50 years. It has allowed me to reduce the number of Reglan pills to two per day. I am trying to get off the Reglan for good.
I have my first appointment with a gastro dr. next week. I am interested to hear what he thinks about Igerogast. I will let you know.
I also have used accupunture to help with nausea and feeling of fullness. It seems to help too.
I try to stay strong becasue I want to be there for my son.
Take care,
Alley

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Alley,
I try to be there for my son to. He dosent quite understand all these conditions but he sees when I am sick. I hope you can get off the reglan. They say you shouldn't take it permenanatly. I hope it doesent cause you the problems it did me. Now I don't know what to do about my eyes. Good luck with your appointment at the gastro doctor. As soon as my car is running I am going to find a new one. My GI doctor is not very good. He has done nothing to help me. Thanks for letting me know about the Igerogast. I never heard of it.
Stay strong,
Trish

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Hi everyone!
I just had a hysterectomy and a bladder put back in the right place. I too am 44yrs. old, work as a teacher, and have children who depend on me to be their mom. I am fighting this GP stuff with xifaxan, domperidone, gas-x, and laxatives when my IBS is terrible. The nausea is sometimes so bad I have to take the phenigan suppositories. I just do whatever I can to exist. Hope all of you continue to do whatever it takes to keep living. My heart is with all of you. My GP developed after a hiatal hernia operation using the procedure nissen fundoplication. I wish I never had the surgery. I regret it to this day.

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