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1STATEOFDENIAL's Photo 1STATEOFDENIAL SparkPoints: (128,517)
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8/3/12 6:43 P

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I completely understand your frustration. In my case, there's no way to know for sure which of the multiple causes I have was the final straw, and now I've been told abdominal surgery could kill me (because of one of my rare conditions). I don't have the vomiting, just the weight loss because of pain and food sitting so long that I just couldn't eat any more. I was put on TPN and that's how I gained the weight back. But we don't want to do anything long term if we don't absolutely have to. Still, the frustrations are there because this will be happening forever with me.

The best thing I can say is keep seeing more doctors. When you find one that really understands GP you'll have better luck with finding answers. Just be prepared and understand there might not be an answer for you. There are no cures for GP and all of the treatments have difficult consequences. We each have to find a treatment that works for us.

On the food angle, since you're not trying to lose weight (some people are overweight and trying to lose while dealing with GP) focus on things that are simple carbs. Always keep them nearby. You can do things like jelly beans, gummy fruit snacks, hard candies, etc. When you suck on them the carbs will be absorbed through your mouth. It will help power your brain and will help give you energy for your digestive tract to work (a little better). Also try making smoothies out of simple ingredients like nonfat yogurt, applesauce, and carnation instant breakfast. Fat and fiber are the hardest to digest macronutrients so keep those low and focus on more carbs with some lean protein. this doesn't mean only eat carbs but focus on them. When I was at my worst some days the only thing I did was suck on gummy fruit snacks. It got me through the day and the next day I added a few bites of something else.

As for my doctor, I've been going to Froedert and Medical College of WI which is in Milwaukee. They have several GI doctors on staff, so you can find their website and call to see who can get you in soonest. Make sure to mention that you were diagnosed with GP but want a 2nd opinion and better treatment options. As the doctor said to me, there's a difference between gastroparesis and just slow emptying, so they will probably redo the tests and some others you haven't had done before. (He's requesting my records to see what else he wants to test me for.) See if you can send your records to whatever doctor you're assigned to before the appointment, or if you should bring them with. I'm certain they will want to see them. You'll also have to fill out paperwork they will send to you.

If you haven't read what I've posted on our team about the GP diet and how to figure out what your body will handle, here's the short version: start out with the simplest foods you can imagine like liquids or very soft foods. If you can get that down and keep it down, then slowly add no more than 1 new food every 2-3 days. It takes 24-48 hours for food to go through a 'normal' GI tract and can take even 72 hours for those of us with a slow GI tract. So if in those few days you have a reaction (pain, bloating, vomiting, etc) you'll know what food is causing it. Over time you'll build up a list of what foods your body likes and doesn't. This actually works for anyone who has any digestive problem, as another of my sparkfriends thought bananas were a problem until she went on an elimination diet and found out she's reacting to the gluten she'd had hours or a day earlier. Also, don't drink liquids while eating solids. Drink water before a meal or after a meal not during (unless you need a sip to help swallow). Avoid eating and drinking cold foods whenever possible. Just like when you put ice on a bump to slow the blood flow (which causes a bruise) and dull the pain, putting ice water into your stomach will constrict blood flow and slow the nerve signals, which can make the GP worse. Go for lukewarm water or cool if you must.

In addition to acupucture (I've never tried it so I can't give an opinion but I've heard good things) you can try getting massages. Not only will they help you relax but it will help get the junk that builds up in your mucles and joints from not getting proper nutrition. Also try different positions such as walking around after eating or really focusing on standing up straight so your stomach isn't crunched or crimped. In rare cases (like me) laying down might help, but for most people it will make it worse.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


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8/3/12 4:09 P

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You didn't scare me, thank you though! Learning that the Mayo Clinic didn't help you either somehow helps me feel better about them telling me no as well. I am on reglan (metaclopramide) and it has allowed me to maintain my weight of 120 since I was put on it in April. (before then I was losing about 8 pounds a week and was 94 lbs when they put me on it). I have tried just about every PPI and they all have had terrible side effects. Nexium gave me such bad diarrhea I was unable to leave the bathroom during the day and was sleeping in diapers. I will have to talk to my doctor about the zantac, I was unaware of those side effects. My GI doctor specializes in IBS, but knows very little about gastroparesis. I have been searching for a motility specialist in the Chicagoland area (that is in my insurance network) but so far have been unsuccessful. Milwaukee isn't too far from me, which doctor did you see there? As for the neurostimulator and/or feeding tubes, my GI doctor feels that since I have been able to keep weight on I don't need any surgeries. However, just because I've been able to keep weight on doesn't mean my symptoms have lessened or improved. I am keeping some meals down, but I still vomit up about half of what I eat and my bowel movements are a constant issue. I am going to start doing accupuncture soon because I have just about run out of options and need to try something new. My doctors seem to think that since I'm not starving anymore that I must be okay. I just don't really know what to do next.

1STATEOFDENIAL's Photo 1STATEOFDENIAL SparkPoints: (128,517)
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8/3/12 2:24 P

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I don't mean to scare you, but I had a terrifying experience at Mayo in Rochester, MN. They berated me and told me "there couldn't POSSIBLY be ANYTHING wrong with you!" About 6 weeks later I flew from MN to PA to a different doctor and my emptying scan showed serious problems. Since then I've received multiple diagnoses. Going to Mayo made me worse and actually could have caused serious complications (prepping for a test caused severe tearing pain in my intestines and they ignored my concerns).

Also, know that the gastric stimulator is not the first treatment to try. Your GI specialist needs to figure out what caused your GP then treatment is based upon that. The gastric stimulator only helps if the nerves are significantly damaged and that's the cause. If it's a musculature problem it won't help. If there's a blockage or an allergic reaction it won't help. If it was caused by a bacterial or viral infection it won't help.

Make sure your doctor knows what meds you're on. Some medications can actually cause GP because it upsets the neurotransmitters in the GI tract, like SSRIs (a form of antidepressants) which upset the balance of seretonin. Zantac can also be a culprit, as hystamine-2 blockers disrupts the function of the stomach and can damage the muscles. PPIs (proton pump inhibitors) like the meds that end in -prazole (omeprazole, lansoprazole, pantoprazole are the generic names) adjust the amount of acid produced, not block the release of the acid. Over long periods of time hystamine-2 blockers will cause damage and slow the stomach (my BIL has studied this topic). So talk to your doctor about the possibility of changing your Zantac to an OTC PPI. This might do you a LOT of good. I don't know some of your meds so I can't speak on everything, but this is one thing I know.

The reason I asked about your meds because there are meds out there that will be used to treat GP long before they consider surgery. These include Reglan (which can only be used for 3 months because the side effects can be severely damaging), Erthromycin (an antibiotic that helps the GI tract move easier), and Domperidone (still in final stages of FDA approval so only a few doctors in the US are legally allowed to prescribe it, but it is used around the world to treat GP) amongst a few others. Some people respond well to the meds. There are also G/J tubes and J tubes (what might be in my future) as well as TPN through a PICC (which I've been on twice this year and some are on it for the rest of their lives). If you don't know what I'm talking about, you can look these up or ask me and I'll explain.

You also need to understand the extreme risks of the gastric stimulator. A few weeks ago G-PACT mourned the loss of a woman who died from complications of a gastric stimulator and feeding tube placement (I didn't find out if it was a G or J tube). It is serious surgery and leaves behind a huge lump in your abdomen where it is placed. They also have to go back in several times to adjust the placement if it isn't working well enough, and each new surgery presents more risks.

I'm not trying to scare you, but I'm trying to help you understand that there are many options out there for treatment, some of which carry less risks and may help you much more. If your GI doctor doesn't know about all the treatments you should find another one. I went through several GI doctors until I found a great place in Pennsylvania and now my case is being reviewed by another GI doctor in Milwaukee who I was sent to by a neurologist who wants yet another opinion. There are a multitude of causes for my GP and it appears I've had a mild form since birth, and several of the causes are rare - so the more doctors I see the better chance they can figure out a way to help. Though every person should be willing to get 2nd, or 3rd, or 10th opinons until they find a doctor who is willing and able to figure out what caused the GP and how they can treat it with the least amount of complications.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
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8/3/12 3:00 A

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oh boy... treatments. I am on a lot of medicines.. let me see if i can remember them all: I take metaclopramide, zofran, zantac, amitiza, lomotil, miralax, a magnesium supplement, a gluten free multivitamin, paxil, xanax, and dicyclomine. I am on an almost all liquid diet, except I can tolerate mushy foods like mashed potatoes, rice and bananas. I applied to the Mayo Clinic to see if I could get a neurostimulator, but I was denied. :(

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8/2/12 10:30 P

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Welcome Brynn,
Utilize the information that you have gotten. I also was able to find out more information by using the research on this site. It is wonderful the abundance of information this site has. I'm like you. I had to gather as much information that I could for all the different things that were wrong with me. It was a real blow to me when I had to change my diet. I'm adjusting now and doing a whole lot better.
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'I can do all things through Christ who strengthens me.' Phil 4:13


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1STATEOFDENIAL's Photo 1STATEOFDENIAL SparkPoints: (128,517)
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8/2/12 8:33 P

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emoticon to the team and to SP! There are a lot of tools here that are great, but the food tracker is wonderful for those of us who need to figure out what foods our bodies will accept. What kind of treatments are you getting for the GP, or are you able to do okay through dietary modifications?

I hope we can help you figure out how to live with this condition.

~ Sheri ~

My blog about Ehlers Danlos Syndrome: www.sparkpeople.com/mypage_public_jo
urnal_individual.asp?blog_id=5444844


Every Day is a Chance to Do a Little Better! Forgive Yesterday, Hope For Tomorrow, Do Better Today!
teams.sparkpeople.com/doalittlebette
r

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8/2/12 2:25 A

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Hi, my name is Brynn, I have GERD, Gastroparesis, IBS, PCOS and several food allergies. I was diagnosed with gastroparesis in april and I've been doing a lot of research since then, since my doctors didn't have too much information for me. I've heard from numerous sources that logging your food has many advantages for people with a lot of dietary issues. However, it has proven to be more stressful for me than anything else. I'm excited to start tracking my food on here, since it appears much more informative and exciting! (always trying to stay positive, even though it's hard when you're sick all the time).

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