Learning to live with gastroparesis

Hi,

I am a 40-year old female living with gastroparesis and reflux. I cannot tell you how much this illness has changed my life. I can no longer go out for a "casual" bite to eat or a cocktail. Each day I wake up not knowing if it is going to be "good" day or a "bad belly" day. My lifestyle has changed and I find that the chronic nausea and stomach pain interfere with every aspect of my life (recreational, social, business, work, etc.). I find it difficult to make plans, take vacations, go back to school, and often just function in a normal day.
Fortunately, I live with a very supportive boyfriend but I would really like to find out how others have adapted to the "lifestyle" change that this disorder causes. Feedback would be greatly appreciated.

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I had the exact same problems. Except I had a diseased gall bladder I had taken out in Oct. that probably led to my gastroparesis. And lots of acid reflux.
They did an endoscopy (second one in one year) and found I had the stomach of an 85 yr. old woman (looked like it). They put me on protonix and reglan. I can now eat and have gained weight and have little to no acid reflux. I am not eating normally, mind you, but am still on a spice, caffeine, fat free diet. I still have to be careful but can enjoy eating (low fat bryers two small scoop, double churn ice cream) yes! And I drink soy milk. Easier to digest.
Now they are looking into a small pill (capsule endoscopy) test to see if I might have Chron's disease. Gastroparesis doesn't just happen to you. there is always a reason and you have to look for that reason or you will constantly live with discomfort and wonder why like I did for 1 and a half.

God bless,
Darla

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I know how you feel, I've been dealing with this for 2 years now and finally had the gastric pacemaker implanted. It's too soon to know how it will help with the daily nausea, but it was my last option. It's such an odd disease for me, some days were worse than other and I'd eat the same thing. It's just trial and error mostly errors... just know your not alone you're lucky to have a supportive partner that really helps. Take care, Twin

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Gastroparesis is definitely a life altering disease; I was dignosed in 2004 but probably had this illness longer than that and was not correctly diagnosed. It does take some time to adjust and I like to look at my eating habits and even "social life" as my new normal. This in no way is meant to minimize what we have to go through!!!! It is not easy to drastically change every aspect of your life but just so you know, with alot of support and even information (like what you can find out from this online community and from AGMD) it really helps! Also, I think since I was so sick in the past it really makes you look at things a bit differently - I appreciate the little things that life has to offer now!
I bring my own food where ever I go now - it just helps to be able to go out and try to have some fun! Don't know if this is helpful but please remember you are not alone - we really need to help each other along our journey with gastroparesis!!
Dorothy

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Hi Twin, I am interested in your opinion of the gastric pacemaker. My dr. is beginning to feel this might be my only hope for some relief from gastricparesis. I have suffered with this for about 30 years but I was diagnosed only 3 years ago. I am finding that no matter how I try to manage how I eat I suffer terribly and now have other complications. I would love to know how you are feeling now and what if any progress has been made t o your life since the pace maker. Thanks Nancy

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Hi Nancy, I 'am only one week post op, so I'm still healing and the doctor told me that I need to be patient because it could take a few weeks for me to see or feel the effects. I'm so sorry that you have suffered for so many years, The doctors tell me this should help with the daily nausea, it's not a cure for the gastroparesis, but hopefully it should provide some relief. I can keep you posted on my progress. have a good day , Twin

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Hi Twin, do you have a name you'de like to share so we can continue to support each other in a more personal way, obviously only if you choose to? Thank you so much for answering my email so quickly. I only hope that you have positive results with the pace maker. We are also talking about visiting either the Mayo Clinic or a University in Florida that is doing new research first before I have the operation. I am interested in how you feel down the road so I hope you won't mind sharing your results? Have an easy recovery and be well nancy

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Hi Nancy, my name is Karry, nice to meet you. I'll keep you posted on my progress, good luck with the research options let me know hoe they go. thanks again, have a good day, karry

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Hi Kerry thanks for sharing your name, and also thank you for your willingness to share your progress. I will indeed share any information I receive from the research, I'm not going to get involved until August after our famiily vacation, I can only do one thing at a time! Take care and I wish you a wonderfully successful experience Nancy

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Hi Imitcher. I fully empathize with you as I have been going through this for about 10 years but was misdiagnosed for years and was told that I had COPD due to the fact that I constantly had Pneumonia and Chronic Bronchitis and nobody would listen to me when I tried to tell them that I was aspirating in the night and the vomit was going down into my lungs. I now have a great doctor and have taken every motility drug available but nothing helped. I now see a light at the end of the tunnel as I am seeing a surgeon on 2 August with a view to having a Gastro Pacer inserted. I am a Senior Citizen and I love to travel. Last year I made up my mind that I was not going to let this illness make a prisoner of me and so far this year I have traveled on 14 Aircraft. I always carry snacks with me and when I think I am going to be sick I head for the nearest bathroom, I also take Anti Depressants which really help me to stay happy. I haven't slept in a bed for about 3 years now as I know that if I lay down I will be sick so I sleep on my recliner. Hang in there dear as you are still young and I am sure that they will find a cure or viable treatment sometime in the near future. By the way how much motility do you have? I have only 14 percent. Good luck to you and may God Bless you. Cheers. Mags

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Mags,

Thanks so much for your encouragement and feedback. I really appreciate it. I, too, have tried every motility drug available but have not had any success. I was also encouraged to hear that you have traveled. Taking a vacation has not been an option for me lately. Stay in touch.

Lonna

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Hi Karry,

Could you also keep me posted on the progress of your gastric pacemaker. It has been suggested to me. Also, have you ever tried the botox injections? Unfortunately, my current health insurance does not cover either option but hopefully that will change in the future. Thanks again for your feedback.

Lonna

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Hi Lonna,
Hi Nancy,

Well it's been almost 3 weeks since the implant, I've been back to the doctor's once to have the implant adjusted, which has seemed to help. I cannot eat any more food but I have noticed a difference when I do eat the nausea is not always there, which is wonderful.. My doctor told me it will take some time, and be patient. I do feel this has helped me. When the pain from the surgery is gone that will be great. I have had the botox injections, and the following year I had a pyloriplasty, which neither one seemed to help me.. That's why we decided to try out the enterra therapy pacer. I had to work with my insurance co. because both the botox, and the implant were considered experimental, it took some time, I can give you more info on that if you want it.
Take care and have a good day, Karry

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Hi Mags,

could you explain gastroparesis to me? I have achalasia and am always told that my esophagus or bowels look old for someone my age. I have had many surgeries and they have brought on other problems. Maybe knowing more about gastroparesis could help me understand the new problems in motility and the large diverticula in my "new esophagus"

Thanks, cheryl

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Hi Cheryl. In answer to your question Gastroparesis is a paralysis of the stomach, mine was caused by Diabetes but my GI doctor tells me that sometimes they don't know what causes it, anyway what happens is that the food moves very slowly through your system and very often (for me at least) the food doesn't get past the Esophagus before I am throwing it up again plus I feel nauseous most of the time and feel that I can't even look at food never mind eat it. It certainly limits your social life. There is a procedure called a Gastric Emptying Study where you have to fast for at least eight hours and then the Radiology Tech gives you an egg sandwich with radio active particles in it then lays you on a table for one and a half hours while the machine scans the particles going through your system, this tells them how much motility you have, I only have 14 percent. I also have had a number of surgeries which doesn't help my digestive system because of all the scar tissue. I also have Diverticulitis, GERD and a Hiatal Hernia. I joke with all my doctors and tell them that a large roll of Duct Tape would probably put me right. (smile). You have to keep a sense of humor otherwise you would go bonkers. I did a little research on your condition Achalasia and it seems to me that having that is worse than GP. Well I know I have rambled on a little but I hope I have answered your question. Hang in there Cheryl and know that you are not alone. God Bless you my dear. Cheers. Mags.

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Hi Lonna. I was reading your comment today about your Insurance Company. I am a Senior Citizen and on Medicare and this surgery is Medicare approved as long as it is done in a University Hospital. If I were you I would take up your case with your State Insurance Commissioner. I look at it this way, if it is Government approved then it should be approved by all insurances. What makes me angry is that some clerk who has no medical knowledge and knows nothing of what you are going through, is making these adverse decisions regarding your health. Did your GI doctor write a letter to them telling them about your condition and explaining that there is not a surgeon in Boston who does this procedure? My GI doc did this for me with my supplemental insurance as I am going out of State also (I live in AL and have to go to a doc in TN) and I had no problems, they gave me a waiver. I spoke with a lady here in Alabama who had the surgery done and she had to fight Blue Cross/Blue Shield for 2 years before they gave in and authorized her surgery. Hang in there Lonna and keep fighting them also think about what I said about your State Insurance Commissioner. Take care of yourself. Cheers. Mags.

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Hi Karry,

I am seriously starting to consider the enterra therapy pacer. I am not sure where to start as my insurance will not approve the surgery because it is considered "experimental". I know that I will have to go through an appeal process. Do you have any additional information that you can provide in regards to how you approached this? Also, did you use the Dr. Melvin that others have referred to in various posts? Thanks so much for your time.
Lonna

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Hi Lonna,

The first thing I did was have my doctor Lee Swanstrom submit this procedure to my insurance company. We got denied... We then appealed, using the help of Medtronix, Vicki, helped us file an appeal, which was again denied due to experimental reasons. I don't know who your insurance carrier is mine is United Healthcare who seems to be one of the most difficult to get this through. After my denial, the 2nd time, I was passed on to a patient advocacy attorney, who took my case and we won... based on the facts of my health and we had tried everything possible to help with the gastroparesis. It does take some time and patience but now almost 6 weeks post surgery it definetly is worth it to me.. I can eat not a lot, but I don't feel so sick after eating..Yeah!! My doctor says I have to be patient while we get all the settings correct for me. It has helped my quality of life. Let me know if you need any more info. Take care, Karry

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Has anyone with GP ever tried Digestive Enzymes to help break down the food. Digestive Enzymes have made a huge, huge difference in my daughters health. They come in over the counter brands and prescription strength.
After a stool study with The Great Smokies Lab, the GI confirm she wasn't digesting her food. She has taken CREON with every meal and every snack for the past year and the food is now digested and she is growing beautifully. Still has to use laxatives twice a week because of her motility problem CIPO, but they work quicker and with only a couple pills now, I guess because the food is digested. Amazing difference in her health. We do several other things also but this is one of the major ones that has affected her health.
Hers started out as severe constipation, led to CIP, and then we finally figured out the whole not digesting her food thing before she got to the severe throwing up issues, but after a long road of doctors and tests.
The test was paid for out of our pocket because insurance said it was for nutrional purposes. Go figure. Besides the colonoscopy, it was the only test that showed us what was truly going on. It was worth every dollar. I am grateful she can now eat half way normally. She still avoids fats and hard to digest foods like corn, cheese and junk meats. She is lactose intollerant and uses Laxtose free milk.
Not sure if this info will help GP patients, I haven't heard any of the GP patients say they have tried digestive enzymes on this site yet so I thought I would ask and share our discovery.
Sincerely Darla34

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Hi Karry. So glad to hear that you are having some success with the Gastric Pacer, I know it is still early days yet but I sincerely hope that you continue to improve. Cheers. Mags

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Thanks Mags,

As you know any help is always appreciated. I'll keep you posted on my progress. take care Karry

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