New and obviously need more information

Hi! I am brand new to this site. I was just diagnosed with GP in May. In February, I started having symptoms of some pretty severe constipation that wasn't clearing up on its own - along with some blood in my stool - which prompted me to go to my doctor, who eventually sent me to a gastroenterologist. I had a hard time getting in to see the gastro, since she is one of very few women gastro doctors in this area and is booked months in advance. Finally, I was able to see her in April, and had endoscopy/colonoscopy scheduled in early May. Upon undergoing the procedures, I was diagnosed with gastroduodenitis and had 4 precancerous polyps removed. I kind of figured that I had some lower GI issues, but was shocked to find out that I had upper GI issues as well. After the gastroduodenitis diagnosis - I was sent for an emptying scan which showed my stomach emptying to be moderately slow, and from there, gastroparesis was diagnosed.

I am rather frustrated because I can't even see my gastro until the end of this month, since she is so busy, and have very little information about gastroparesis. She sent me a diet sheet that told what I could eat, but didn't really say what I couldn't eat. I tried calling her office to request an appointment with a dietician, but nobody has called me back. I will try again today - but am just growing frustrated, and more than anything concerned that I have what seems like a pretty serious illness, and know very little about it. I have learned more from reading Internet articles, than I have from my physician. There's something wrong with that!

Anyway, bottom line, I would like more information. I am rather shocked that I have GP, as I'm not having many of the symptoms that I have read about. I actually have gained approximately 20 pounds in the last two years. I went to see an endocrinologist and started some thyroid hormone replacement that will hopefully help that. I have always had abdominal bloating, I don't know that its any worse now than it was when I was younger - except for the fact that I am heavier, and therefore the bloating is more noticeable. I have had gastric reflux disease, which had gotten worse in the last couple of years. I have also had some major break-outs - I have been diagnosed with rosacea - not sure that this is related to GP.

The diet that I was provided has me rather strange - eat white bread rather than wheat bread. A lot of the other foods on there seem strange as well, but I am following it somewhat - not 100% at this time. Not sure how much this makes a difference. How about others out there? Do you follow your diet 100? What happens when you fall off the wagon (as far as your diet is concerned)?

Not sure what to expect up the road. Any information you can provide about your personal experience would be very helpful to me. Thanks!

By sharronm55us
Posted June 5, 2009 at 7:49 am
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The one thing I know for sure is there is NO diet that works for everyone. You are going to have to become very aware of your body and what it does after you put in certain foods. Most of us on here know this disease is DIFFERENT for everyone.

When I had the GP they had me on no fat. Now that I have no tummy they want me to eat fat. LoL

I wish I could give you a simple answer but when it comes to this stuff there simply is none. Your body will tell you one way or another what it is tolerating and what it is not accepting. GP is not one of those medical problems where the doctor can say do this and this and this and you will be fine. There is no "one way" that fits all. Wish there was!

Best I can say, pay attention to what you eat and what your body does after you eat it. Those foods you love that cause problems you are going to have to throw out even if every other person with GP can eat it, you may not be able to.

The diets they give are a good foundation to start from, but honestly your diet is going to be ruled by your body not a doctor.

Keep posting the people in here are very helpful and have lots of great tips to help you out!

Have a great weekend!

By alphabubo
Posted June 5, 2009 at 9:07 am
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Welcome! I am glad that you have found this forum although I am sorry that you have gastroparesis. As the other person said, gastroparesis presents itself differently for each person and there is not one single way to treat it that will work for everyone. You will need to find what works best for you.

As far as diet, one that is low in fiber and fat is usually suggested as it is much harder on the stomach to process these two substances. This is probably why you were told to eat white bread instead of wheat because the wheat would probably have more fiber. It would probably help you to keep a journal of what you eat and how you react to see if any patterns develop or details emerge that might prove helpful in figuring out what will be the best diet for you. It is important to keep in mind that a food that one person can tolerate may aggravate the symptoms of someone else. Thus, it is important that you adjust your diet to works best with your own system.

Not everyone loses weight with gastroparesis although I am one of these. There are some who have trouble with gaining as the body can go into starvation mode if it is not getting all that it needs and so begins to store whatever is taken in.

Has your doctor mentioned the possibility of taking any kind of motility medications? I also have trouble with acid reflux in addition to gastroparesis. Are you taking anything for this? Because of gastroparesis and reflux, I always sleep with my head elevated.

Just know that you never have to be alone in your dealings with this. I believe that there can always be hope. Please let us know if you have any other questions or come if you just need to vent as you can be sure to always find a shoulder to lean on here. I will be sure to keep you in my thoughts and prayers. Many hugs.

Warm regards,
Bobbiejo

By SueBee
Posted June 5, 2009 at 12:41 pm
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Hi Goldie512,

The first gastro doctor I saw did not provide me with much information after the tests were done and left me hanging too so I found another doctor who was much more responsive, knowledgeable, caring, and supportive. It's important that you find a doctor like this since this is not an easy thing to go through. Unfortunately it takes time to learn what works for you - both medications and diet - and there are no clear answers.

As far as the diet, check out http://www.gicare.com/diets/Gastroparesis.aspx. It's a great reference for all stages of this illness. Also, I recently met with a dietitian who advised the following (Note: Other people were given slightly different advice and I have a less severe case of GP compared to others):
- Have small more frequent meals. It's hard for me so she suggested having 3 small meals and 2 snacks a day.
- Read labels. Avoid foods with 5 grams fat or more per serving and avoid foods with 3 grams fiber of more per serving.
- No oil or butter. Steam, poach, boil, or broil food if cooking. Note: If necessary just use a VERY little oil when cooking but it's something you really should avoid.
- Keep fruits and vegetables to 1 cup or less per meal/snack (see link above for what fruits and veggies to avoid)
NOTE: The boxed soups (carrot ginger, sweet potato, roasted tomato) and jarred or canned fruits (pears, peaches) from Trader Joe's and Whole Foods are good. Just check labels for fat and fiber count.
- No red meat but ground or very chewed chicken, turkey, pork, non oily fish is okay IF you can handle it.
- Eat Fage yogurt or drink yogurt (such as Yo Baby or Stonyfield) IF you feel okay with dairy products.
- Take a liquid vitamin/mineral supplement each day. I started another discussion on this subject. Check it out, if interested. Note: Doctors want you to drink Ensure or Boost to get these nutrients. My stomach couldn't handle drinking it and I prefer not to drink something with so many artificial additives.

As far as medications, everyone is different. My doctor first started me on Reglan. It worked pretty well for a while but then lost effectiveness and caused negative side effects. You can't be on it for long periods of time anymore so doctors will eventually wean you off of it. Then I tried Eurythromicin. It worked for less than a week for me but now my doctor wants me to try taking it one week on and one week off. Also, she is having me start Domperidone (10mg) - a drug that is not sold in the USA. I started another discussion on this subject earlier too if you want to check it out.

So it's all very experimental. It can be very difficult and frustrating since it impacts your life in a big way. Therefore, try to do things to relax, feel peaceful, and enjoy life while you're going through this process. It's not always easy. Also, know you're not alone and there is a great group of people on this site to support you.

Hope this helps!

Best wishes,

Susan

By busyteacher
Posted June 5, 2009 at 5:47 pm
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I gained weight as well, as I was on a diet for IBS, which is high in fiber--so I was not eating enough, drinking too much water, and getting sicker.
I mostly live on smoothies, carbs, and simple proteins. You can eat nutritiously--but you do have to experiment with foods that are right for you.
Symptoms come and go. Some days are good. Some days are bad.
You might want to rethink your GI. If you can't have access, and you are dealing with a chronic illness, you might do better to either find someone else. They may not be technically "the best", but if they are willing to work with you, you may be better off.
This is a good place to find information. I have been much healthier since I have been listening to the people on this site. I am so grateful to have a community I can turn to--honestly with any question--for advice.
Take care of yourself.

By Goldie512
Posted June 5, 2009 at 6:13 pm
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Thank you all so much for the information. It is nice to know I'm not alone in this, even though I wouldn't wish this on anybody else. I will definitely heed all of your advice. On the top of my list, I need to look into finding another doctor. While I really like this one, I need one who communicates with me - not just sending a letter with boxes checked off. This is not a minor diagnosis - it's one that will effect me for the rest of my life.

The idea of making a food journal is very helpful. I will start doing that today. Also, I like the website, that was helpful, and the list of foods to eat and not to eat helps as well.

As for medications, I am on Reglan, although not noticing much difference on it than when I'm not on it. I'm not too impressed with the known side effects of Reglan, and therefore somewhat frightened to stay on it. She gave me a two month supply of it. I also take Omeprazole, which I have been taking for several months for gastric reflux - that has been very effective for GERD - but not for GP.

As for drinking "too much water" is that a problem? I am a big water drinker - constantly drinking water at my desk while I'm working. I drink at least 8 cups per day - if not a lot more some days. I can stop this or at least slow it down if this is an issue with GP. I have also practiced a high fiber diet, up until now that is. I wonder if this is what caused my GP in the first place, although I have several other factors that could have contributed as well, so it's hard to say that would be the one and only cause for me.

Its interesting to know that GP effects different people in different ways - so like you said, I just need to find what works for me. Having the food journal will help me with this.

Thank you all again for your support! This means a lot to me!

By alphabubo
Posted June 6, 2009 at 9:27 am
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Although there are some people who do benefit from Reglan, there are some who do not react well to it. If you have been on it at least a month or so and have not noticed a difference, you may want to ask about the other motility medications available. The Erythromycin is an antibiotic which when given in smaller than usual doses is hoped to irritate the stomach into working. Domperidone has this advantage over Reglan in that it does not cross the blood-brain barrier and is thus less likely to cause neurological side effects. It is not FDA approved, but I was once able to get it through a special program through my doctor which required me to buy it from Canada.

I do not see why drinking lots of water would be a problem if it does not now bother you. Many with gastroparesis have trouble getting in enough fluids, so if you can tolerate lots of water and thus prevent dehydration that would be good for you. For me, drinking water or any other fluids tends to cause me reflux and I tend to keep down solid foods better. However each person is different and what works for one may not work for the other and vice versa. Many others have noted that they tend to digest liquids better than solids.

I do not know if eating high fiber foods would actually cause gastroparesis, but they could aggravate it's symptoms since this substance along with fat is hard for the stomach to digest.

I hope that you may be able to find a knowledgable and compassionate doctor who will be able to more closely work with you on helping you to improve your health. I will be sure to keep you in my thoughts and prayers. Many hugs.

Warm regards,
Bobbiejo

By JoAllison
Posted June 6, 2009 at 1:18 pm
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Hi Goldie,

I have GP with killler GERD as well, and I'm about 45 pounds overweight & can't seem to lose. Ironically, just before diagnosis I was on the Weight Watchers diet & eating really high fiber & had chronic constitpation, 24/7 breastbone to ears intense heartburn for months.

As counter-intuitive as it is, I switched to the GP diet, and liquid vitamins & some supplements that I put in my morning smoothie, and put the head of my bed up on blocks, and now my reflux is controlled, and & I am currently in a fairly good place with the other GP symptoms (it's and up & down condition). I was able to drop one of the Zantac - I was taking two nexium & two zantac a day - and may get permission to drop the other Zantac on Monday since I keep forgetting to take in anyway. I'm not on any motility drugs - I refused to take Reglan.

Putting the head of bed up on 4 inch blocks helped the GERD (GI recommended 4-8 inches). I don't feel like I'm sliding out either.

Keeping a food diary helps a lot. But it's hard because you don't get a reaction to the food right away, but rather 6-12 hours later. I'm not very good with diaries and so started an intermittant blog about living with my version of GP. I don't always have the energy after work (I have a high stress job) to keep it up like I should, but it does track my learning curve with this condition & notes on everything I've tried & what has worked for me and what hasn't. Since your symptoms sound like mine, you could skim it from the beginning & see if anything helps you (http://newnormal.blogstream.com/) - at the bottom of the page, page 20 is the beginning.

The GP diet helps a lot, but within that diet, you still have to see what you can & can't eat without repercussion. It says you can have ground tenderloin - I can't do any sort of red meat, ground or not. But I can do chicken (well-chewed) & fish most days for at least one meal. I eat a lot of soups & put together a smoothie for breakfast nowadays. But I can go out to dinner with my boyfriend to a resturant on occasion, if I watch the ingredients - we'll share a meal often on those time (we've found I do better at some American resturants, Italian, Indian, & Greek.) I drink a lot of tea (rooibos tea, it helps GERD too) so I can't see how water is bad for you - it's just that some few people with GP have problems digesting water I've read, while most of do better with things that are liquid or colloidal liquid.

Oh, and I should say just so you don't get unreasonably disappointed when it happens. GP is a changeable thing. Oddly enough, what works one week might be bad another and then good again later. (Aggravating that.) Most of us have good runs & then bad days or weeks or months, then good ones again. I think as we learn to adjust to it (not just the food but paying attention to our bodies and getting needed rest & nutrients & reducing stress - stress exacerbates it), the good periods get longer. You'll read stories of people progressing to disability, don't let that scare you. There are those of us who work too - I'm one of them, full-time plus, in a really high stress field/position. I'm also active in my church, though I've had to cut back a little & only kept the things really important to me. And there are some, who had the virus caused version, who eventually get better and stop posting (my GI tells me it takes 2-5 years to get over the virus caused version).

Hang in there. you'll figure it out. Knowledge helps reduce stress & fear so ask any question you can dream of, we'll try to answer.

Jo

Good luck in sorting out what works for you

By Novagrad
Posted June 6, 2009 at 8:43 pm
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Hi Goldie!

Welcome to this site! You will receive so much support and information from the members! GP is a hard disease to live with, but having friends here helps!

Mimi

By Goldie512
Posted June 7, 2009 at 9:06 am
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I really appreciate everybody's help! I still have so much more to learn! However, what you have already taught me already is already helping me make some adjustments in my lifestyle. It is also helpful to know what I need to ask the doctor at my next appointment.

I started my food journal yesterday - while I realize that the symptoms may occur several hours later, I will write down my symptoms when they do occur in that journal - and maybe I can tie them to certain food items that I ate hours earlier. At this point in time I'm willing to do just about anything to get on the right track with this disease.

I have more questions, but am going to start a new discussion with it. Thanks again for sharing your experiences with me - this has already made me feel better just knowing I have your support! :o)

By mcmarie
Posted June 8, 2009 at 2:06 pm
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Goldie...I hear ya on the weight gain, Hon. In the last year or so, I've packed on 30 pounds. I had a Nissen Fundoplication about 10 years ago for a hiatal hernia and pre-cancerous esophegeal errosion. I had GERD so bad I was actually reguritating the food I had just eaten. I've been good after the surgery except for the last couple of years. It's been getting worse and as all my symptoms have come back & I'm packing on pounds. My diet is very strict...only sometimes do I cheat and have yummy stuff. I know that you are sensitive to wheats due to the fiber, but I've been finding that the best meal that makes my body respond and my stomach hurt the least is brown rice, spinach and lean chicken. I then top it with a light soy based dressing (about a tablespoon). I pretty much eat that everyday unless I make a chicken or tuna salad with little or no tomatoes. My breakfasts range from one egg & spinach to a rye bagel with a little cream cheese and fruit.
I've noticed my hair thinning and not growing. I've always had super thick hair and would grow almost an inch a month. I think that's been the hardest to swallow for me....I can put make up on the breakouts and can tough out the stomach pain, but losing my hair is not something I want to deal with right now. The breakouts on my face have been really bad. Proactive, washing my face twice a day...nothing seems to help. It looks as though my body is trying to release the toxins in my system through every pore it can. I'm taking all my vitamins plus some extra suppliments like Omega 3 and calcium.
My doctor is a complete tool bag...he too feels that it's not important for me to know what I have and why it's happening. He actually insinuated that I was faking my problem and refused to contact my past gastro for my history. When I told him of the surgery he rolled his eyes at me. When he did the exam he saw my scars from the surgery, but didn't believe that's what I had done. I have a follow up with him today and I'm bringing in a journal of this past month since my last visit as well as a big attitude for him to chew on. He said that all I have is IBS when clearly my symptoms and pain reflect far more than that. He put me on nexium...which only works once in a while and seems to wear off mid day. He had me on anti-spamatics but they actually made the spasms worse as well as made me want to vomit pretty much all day long.
It's very sad. We go to these professionals beaten, sick and tired needing help...and they just don't give it. Good gastro's are hard to find. It's not right that you should have to get information from other sources. Just remember, you know your body better than anyone else. Keeping a journal is a great way to see what sets off your symptoms and what doesn't. It's also a good tool to take to your gastro and show them your progress in terms of the treatments they have you on...so that maybe they can actually be a doctor and do the right thing. Today is my doctor's last chance. If he refuses to help me I am going to give him a bad review online not to mention some choice words upon my exit.

Hang in there Goldie. Try to relax and get in tune with your body, sometimes it's the best medicine of all.

By Goldie512
Posted June 8, 2009 at 10:09 pm
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I had never heard of the Nissen Fundoplication before, so I looked it up. It sounds rather interesting. I'm sorry that it's not working anymore. I do have a hiatal hernia which was found during the testing that was done prior to my gallbladder operation. Very interesting.

I'm really sorry to hear that your symptoms came back. They sound very painful, plus very disappointing. I wonder if your hair loss, weight gain, and other symptoms may be due to thyroid problems? Have you had your thyroid checked lately? The blood tests don't tell all - I found this out recently. I went to an endocrinologist who actually examined me (yeah - can you imagine - I have been to so many doctors that didn't even touch me and diagnosed me with something - so I was impressed). Upon examination, he said that my thyroid was enlarged, did a thyroid scan - which thankfully was clean, except did show that my thyroid was enlarged on one side. He started me on thyroid hormone, in spite of the fact that my blood tests are within normal limits (but close to abnormal limits). You may want to look into this for yourself. My hair was not falling out, but it was breaking easily - I have terrible split ends worse than I have ever had. This is likely related to the thyroid. For more information on the thyroid, check out this website: http://thyroid.about.com/cs/hypothyroidism/a/checklist.htm.

I actually copied this list onto a Word document and brought it to my endocrinologist's office with me. I really think that it helped a lot having the information up front.

I SO agree with you about some of these doctors. I have been dismissed so many times, minimized, left doctors' offices feeling like there was something mentally wrong with me - not something physical. Thankfully, the gastro doctor actually listened to me - too bad she is not available more in person or by telephone. I received my gastroparesis diagnosis in the mail. That didn't please me too much.

Hang in there, please see an endocrinologist if you can. The thyroid disease can also be related to the GP symptoms - it's worth checking into.

Thanks for sharing your experiences with me! :o)

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