Gastroparesis

I too, have been diagnosed with GP. I am a full-time
teacher this year due to my husband's lay-off. I pray I will be able to fulfill my duties. I take domperidone. It
works for me as long as I eat properly. The diet and
treatment are the key to dealing with this illness. I try to do 100 sit-ups a night, lie on my right side when sleeping, and eat several small meals a day. I drink lots of vitamin water and walk after eating. I fall asleep a lot more now, but force myself to fight the fatigue during the day or after a small meal. My husband and teenage boys as well as my young daughter understand what's happening and are just
happy I'm willing to accept it and do what I must to stay alive. Losing weight is great if one needs to, but buttoo much can lead to malnutrition and removal of stomach so fighting to survive daily begins with one's will. I pray that all of us can survive this comfortably.
Keep the faith! Keep only encouraging people round you. Tell your doctors if spouses are angry and think you don't have this illness. I would not wish this on anyone. Perhaps the doctor can explain the seriousness and reality of GP to your family members so you can have a positive support system.

By Whisperingdays
Posted July 11, 2008 at 4:49 pm

Hi Sue,

I am glad that you are able to maintain your GP and keep a positive outlook on your health. But for me eating several small meals a day is just not possible. Drinking liquids the way I should just isn't possible for me as well. If I force, I throw up if I drink sometimes I throw that up too. If I could find the energy to exercise I couldn't as I was told not to exercise and lose the 10 pounds I have gained from being in the hospital. As I am consider Anorexic from my GP.

Every medication I have tried has failed me or I am allergic to it. I fight everyday to keep pushing forward and I try when I can to eat. I am on TPN because I can't eat enough to keep me alive. I know we all have different levels of illinesses with our GP and other health issues but although I try and keep the best positive attitude that I can, my body doesn't always agree with it.

I am so happy that you are able to push forward and keep food down. I would give anything to have that and hopefully I will if I get my gastric pacemaker. But til then my TPN is my friend.

I pray everyday for a cure and the strength to keep myself going. I hope that your eating will continue as I miss that terribly. I wish I had choices with my body but right now my body says no. I will keep you in my prayers that you can continue to keep your body in the direction that it is going.

Hugs,
Whispper

By chewy1
Posted July 11, 2008 at 6:26 pm

Sue,
I agree with Whispper in thinking it's great that you have your GP under control. It is truely wonderful that your condition has not progressed to the severe stages.
It would really be great if domperidone was a wonder drug that helped everyone, or that just changing your diet and keeping a good attitude would solve the problems. I know we all deal with illness and pain in different ways and unfortunately for so many people who are on this site the key doesn't fit just in medication, diet, exercise and positive thinking.
I'm sure you have read the journals and discussions enough that you see that most people are not just dealing with GP, but have many other conditions which may or may not all be connected.
I also know that for most of us, domperidone or any of the other motility medications are not an option due to the side effects or the fact that they just don't work on our systems.
I'll admit I was never one to exercise daily. But, I did keep up with a classroom full of Kindergarten and First Graders, mow my yard, travel, and other activities. Now, I have difficulty doing these things. When I try to do any physical activity I become increasingly nauseus and end up vomiting for hours. The reflux will be so bad that it feels like it is burning a hole through my skin. And I won't even go into the depletion of what little energy I have or the dizziness.
Diet is certainly an important element in being able to function with GP. I've been dealing with it for about 8 years. I know certain foods that I can never touch, but even foods that are easily digested don't always work either. I can eat something without problems one time and the next time it rips me apart. The really sad part...I can eat and if careful only vomit once or twice a day...but so many others with GP can't eat a bite most of the time and if they do it may come back up...so many have to have TPN and other tubes to help drain their stomachs. I know they wish they could be as fortunate as you are and control theirs with a special diet.
I think keeping a positvie attitude is a key element in all aspects of life. It isn't always easy to do especially when you have just spent weeks in the hospital and are on TPN, in pain, vomiting daily, nauseuas all the time, weak and tired.. (I'm very fortunate and I'm not one of these people) but, I am very proud to say that I have met several people who I now consider good friends through this site who do a remarkable job keeping a good attitude despite everything.
GP is definitely a test of your strength and having people on this site that can be there to hold you up when you are feeling weak is wonderful.
I really am happy to know that some people like you are successful in controlling their GP, through a medication, diet and attitude. I wish that everyone could find the secret combination that would work for them too.
I hope that you are able to handle working full time in a classroom. I tried for 2 years but finally was forced to give up my position. I couldn't be the teacher I wanted to be when having to run to the restroom and vomit several times a day or miss two days a week to go get IV fluids because I was so dehydrated.
I wish you the best and hope you have a good school year.
Judy

By Pebbles5410
Posted July 11, 2008 at 7:29 pm

I have not been diagnosed with GP and haven't been told that I might have it, but I am going to the Cleveland Clinic in 2 weeks. Since I have to travel so far to get there, I want to address all issues that could be causing problems. My diet is very limited and I can't have any fiber and I have to eat very small amounts at a time because I get obstructions in my small intestines. The doc is also going to determine if part or all of my colon needs to be removed. I never have an appetite and if I eat one too many spoonfuls of soup or yogurt or anything I can eat, then it comes back up. It's not like I am vomiting--the liquid or soft food just comes right back up. I assumed that this was due to the fullness caused by the dysmotility in my colon and small intestines. Since I am going for dysmotility, should I ask the doc about looking at GP also. I didn't know if the lack of appetite, food coming up could be related to GP. My weight is up to 100 lbs. because I make sure I get plenty of calories, but if I only ate when I felt hungry, I wouldn't eat.

I will talk to the doc, but I get a lot of really good information from people at Inspire and would like to have your input.

Pebbles

By JenD
Posted July 11, 2008 at 8:54 pm

Hi Sue,

Thanks for posting. Your positive attitude is what will keep you able to deal with this illness. I lived with GP just like you for about 5-6 years then last summer it just progressed and I began vomiting liquids and pills and everything. I am now TPN dependent because my small intestines are too slow for tube feeding now too.

I will pray that you are able to continue with the same methods that used to work for me. Hang on to that as long as you can. Hang in there and know that you are not alone.

By princessfaith82
Posted July 11, 2008 at 11:40 pm

Sue,

I am so happy to hear that you are able to maintain your lifestyle regardless of your gastroparesis. I do agree that a large part of surviving with this illness is positive attitude. It is wonderful that you have found a medication that works well for you. Sadly, I (as many others) personally have not been so fortunate. I have suffered from this illness since I was 4 years old. It is genetic in my family. I had my entire large intestine removed last year when I was 24 and had a temporary ostomy, which was luckily reversed in June of 2007. Now my small intestines is essentially paralyzed. I too have tried domperidone, reglan, amitiza, and many other medications. None of which have worked successfully for me. I just has a porta cath placed this week to replace my PIC line for my TPN. I am only able to ingest liquids in small amounts and soft foods. Sadly, I still have a desire to eat which makes this sheer torture, because when I do I am extremely sick. My husband and family have been extremely supportive. I do try to exercise at least 3 times a week. I ride my stationary bike. It helps me overcome my feelings of uselessness. Until last year I had been working full time. I graduated college with a 3.8 GPA and had many aspirations and career goals. I even hoped to be well enough to start a family. (Maybe next year?) Anyway, the point is that in many ways you are right--faith and the support of family are priceless as is a good physician. Unfortunately, so many of us are in what my doctor has referred to as a "medical black box." We are to the place where medicine has not yet ventured. The only hope that I personally have left is that a pacemaker will make my life bearable. I now live day to day with only a slight glimmer of hope that something can help me. I have been disappointed so many times. I truly hope that your illness continues to be managed in such a way that you can have a "normal" lifestyle. Good health and God bless.
~Sarah

By Sue43
Posted July 12, 2008 at 12:35 am

Hi everyone that replied. I hope I did not diminish your illness or imply what works for me should work for you. If I did, I'm sincerely sorry. Thank God this site is here. I don't feel so alone with this tragic illness. My gastroparesis is a result from my nissen fundoplication surgery. I cannot vomit anything up.
My doc says that just won't happen because of the
procedure. I eat gas-x all day. I too have nausea, but not to the degree that I had back in February 2008. My med comes from Canada so it takes 2 weeks to get here. I'm lucky I can still eat mashed potatoes, yogurt, and many other foods. I pray I do not get to the stages some of you are presently in. Reglan and eurethromycin failed. My grandmother lost her stomach when she was in her 50's. Perhaps this is inherited, I do not know. I was also replying to someone out there whose husband was not encouraging or believing his wife had this. That's also why I said keep only positive people who really love you around you. This is too difficult to cope with when negative people are not understanding or patient . God bless all of you. Good night.

By Kate1
Posted July 12, 2008 at 9:49 am

Hi, Pebbles. I just wanted to say that I hope your trip to the Cleveland Clinic offers you insight and effective treatment for your GI issues. I definitely think you should ask the doctor about GP and whether or not that is part of your problem. What treatments have you already tried? It seems very drastic to be considering removal or all or part of your colon, but I don't know how long this has been going on and what other steps have already been taken. I really hope that writing on this site offers you some guidance and support. Please let us know what your experience is like at the Cleveland Clinic. I have been very curious about what they have to offer (and how they compare to all that I have heard about Mayo). I live far from both, but if things get worse in the future, I will go as far as I need to go to get good care!

Good luck.

Kate

By Pebbles5410
Posted July 12, 2008 at 12:41 pm

Hi Kate,

I started getting obstructions in my small intestines in 2006, but I have a redundant colon which twists and turns and I have had a volvulus a number of times. Problems with colon started over 20 years ago and I have been on meds and special diets and surgery on the small intestines and pancreas. The more natural things seem to help the most, like a special intestinal massage, yoga poses to stimulate the colon, magnesium, stool softeners and fish oil. I will only consider surgery again if it seems absolutely necessary. I have a lot of problems with adhesions due to many previous surgeries. Another surgery would mean more adhesions.

I will let you know about Cleveland. US News and Reports lists Mayo #1 in gastroenerology and Cleveland #2. Some articles have the two reversed with Cleveland #1. My doc loves the Cleveland staff and has worked with them a lot and my daughter is in grad school there so I decided on Cleveland(also did a lot of my own research). Doc gave me a choice of Cleveland or Mayo. I am like you. I am not close to either one but I hope it is worth the trip--at least I will see my daughter that I rarely get to see.

Good Luck to you and thanks for your reply. I am anxious about the trip because I have been through so much and have been in the hospital so many times. Hearing from you was comforting. I am a teacher and go back in 3 weeks so I would like to know the game plan by then.

Pebbles

By chewy1
Posted July 12, 2008 at 9:50 pm

Sue,
Just curious...did you mean that your didn't have the GP symptoms before the fundoplication? Also, did your doctor say tht GP couldn't be caused by the fundolplication?
I'm asking because I have had GP and now changed to rapid dumping for 8 years. Recently I began having severe reflux and testing showed a very high acidity level with that reflux. My GI doctor at Mayo is trying some medications but said that if they don't work that a fundoplication would be the next step. However , he wants to avoid that if possible because he says that it could cause the GP situation to become worse.
Judy

By Sue43
Posted July 13, 2008 at 1:34 am

I never had a stomach problem until after my surgery. My GI doc said he would never have done a nissen fundo surgery without a gastro emptying test first. I made 3 trips to er before my surgeon found the cause of my gas blow ups. I had a hiatal hernia that was so bad I slept in a chair at night. Meds were not working and my insurance company refused to pay for them anymore. I was eating high fiber, salads, lot of fresh fruits all the time. I lost 65 pounds after surgery because I could not eat without gas and severe nausea. I don't have any acid reflux just stomach problems now. My opinion, do your homework before this type of surgery. I think my vagus nerve was damaged. Once this happens you have a paralyzed stomach for life. Nerve cannot be repaired. The truth is I wish I never had the surgery.

By twin
Posted July 13, 2008 at 2:19 pm

Hi Sue,
I had the same surgery in 05. Soon after they discovered that my vagus nerve was damaged from the hiatal hernia surgery leaving me with the GP. I think you mentioned in another post that your intestines get twisted? How did they figure that out? I feel somtimes that nine are in knots, just a feeling. I agree with you on the nissen fundo surgery... take care, Karry

By Sue43
Posted July 30, 2008 at 3:01 am

I read last night that if the vagus nerve has not been
completely cut or damaged too severely, that within a year or two it will rejuvenate itself. I found this info from a GI surgeon on a medical site. Not sure if he's
telling the truth or just covering for other surgeons.
I pray that the medical profession teaches ethics in
med school. Sue43

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