Gastroparesis

• By chewy1
• Posted December 10, 2007 at 11:03 pm

Mary,
Welcome to the group. I'm sure if you have been reading all the post you know you are in the right place for moral support.
What exactly is a noro virus? Just wondering because I just returned from Mayo and the doctor I saw said that the research is pointing toward the cause of motility problems being a viral link. I noticed you had also had surgery shortly before you started the GP symptoms. I know several people on this site had surgery prior to their symptoms too.
I do have some things in common with you. I developed GP shortly after having gallbladder surgery...when I first got sick it was diagnosed as flu for a month...later they did tests and found out I had had mono and a parvo virus during this time. I was very overweight at the time I got sick...I weighed about 230 lbs...but lost over a hundred pounds in a couple of months.
I also had some abnormal emptying scans and some normal. I told Leah in a post that one GI doctor told me that it is not uncommon for someone to have conflicting scans with GP...he said two done within a week could come back totally different. Now, I've never had anyone else tell me that but, it makes sense to me.
I'm no doctor of course, but you definitely have all the same symptoms as the rest of us with motility problems. Of course, maybe yours isn't GP but one of the other motility problems. The symptoms are all so similiar. Most of us do have headaches, some constipation too.
My experiences make me want to tell you if you don't get satisfactory results from your GI doctor then try another one. That's another thing I have seen on this site...most have had to see many doctors to find one to help and some are still looking.
If the constipation continues to be a problem, I suggest you don't just let it slide. I have been for awhile because the GI doctors all just kept saying eat more fiber (which made me sicker). I just found out that I have a Pelvic floor dysfunction causing the constipation and will be going though biofeedback to try to correct the problem. It can turn into a very serious problem if not taken care of ...read some of Jacey's posts to see what she is going through!
I am not familiar with the Xifanican. Have they tried any other medicines?
I'm not sure what else I can say ...I know there are a lot of people on here who are dealing with different severities and different types of motility problems. I'm sure between all of us someone may have something that will be helpful to you.
Just remember you aren't alone with this problem, don't take the word of just one or two doctors...keep looking for one who will really listen to you...and anytime you just have a question, are feeling frustrated and need to vent, just post a comment. Everyone on this site are truely 100% supportive and just talking to them helps!
Judy

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• By mariel
• Posted February 10, 2008 at 10:10 am

hello judy,

i am new to this community. i read your comment and was interested in how you developed GP, i read you had GB surgery. did anyone tell you the reason you deveolped GP? i am asking coz my dad a pretty healthy 69y/o had ELECTIVE GB surgery in june 2007. this supposedly simple surgery developed into something my family didn't expect. the surgeon cut through nd through his common bile duct and needed to repair his mistake. my father ended up after surgery staying in the hosp. for close to 3 months. while there he developed a bedsore, stress ulcer, depression, GERD, couldn't tolerated any oral intake, hernia, leaking at the incision site, and my more things. my father a few weeks before going home ended up with a G-J feeding tube. the g-tube was for decompression, he was always feeling nauseas and we would open the tube so whatever was in his stomach would drain out. then the j-tube was for his continuous feds. since that inital discharge, we have been readmitted in the hosp 9 times. the latest one was feb 7, he is still there. the 9 times was have been readmitted only 3 have been noted related to the vomitting. most of the time admittied for dehydration, n/v, or GI bleed.

my fathers feeding tube was removed in nov. but since then we think he is doing fine, then POW he is feeling nauseated, vomits, and worse he says is the HICCUPS. these docs cant help him with the HICCUPS. i understand he hiccups they say coz his stomach his full. but he hardly eats. we do the small frequant meals soft food, ensure, jello, soups, eggs etc. we are like on a roller coaster.

my father majority of the time doesn't have anyproblem having a BM. his stool he says is very soft. his GI doc doesn't seem to help. unfortunatly my father's insurance is KAISER PERMANENTE HOSPTIAL.

i feel releived that my family is not alone. coz i definately thought we were. i was wondering what meds you guys take. my father takes carafate ( for the ulcer), reglan, and genteric form of prilosec. he tried erythromicin didn't seem to help. he has thorazine for the hiccups but some doc don't want to rx that don't know why. he has zofran for nausea as needed. are there good vitamins or herbs that seem to help you. my dad was about 175lbs and now he is 129lbs.

this has been really hard on our family coz it was my dad who took care of my mom. my mom had a stroke in 1999. so my dad drove her to appts did the grocery shopping, he paid the bills, everyday errands. now my mom takes care of him. thank you for listening to my story. hope to hear from you.

mariel

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• By chewy1
• Posted February 10, 2008 at 11:55 am

Mariel,
I'm so sorry to hear about all the problems your father is having...I'm sure he is wishing he had not ever had the gallbladder surgery since it seems to have set him off on a roller coaster ride...without any of the fun involved!
No, none of the doctors have been able to tell me for sure what caused my GP. I have run through all the different theories for it that others have mentioned and can find a connection to almost all of them at some point.
Until I began having gallbladder trouble, I had never really had any health problems other than the minor ear infections, strep, or stomach viruses. I did begin have migraines when I was about 12 which was the one complaint that always made me the sickest.
I had laprascopic gallbladder surgery in 1999 and everything went fine, other than they did have to go back in with the scope the next day and remove some retained stones in the bile duct. But, that went fine too. I seemed to be recovering normally when I started being nauseaus and vomiting everyday...I kept being told I had just developed a stomach bug...but after a few months they finally agreed something else was going on and began trying to figure it out. During the tests trying to find the answer it was found that I had at some point either just prior too or right after surgery had mono, and a parvo virus.
Eventually, after many tests and visits to specialists, I was told I had GP. I have always been told it was idiopathic since they don't know the cause. In the years since I was diagnosed I have developed urological problems, Adies Tonic Pupil, Fibromyalgia, diabetes, recurrent staph infections, IBS, and newest a pelvic floor dysfunction. Some doctors will tell me there is no connection, others though say there is a connection but they aren't really sure why!
At my visit to Mayo in December, I was put through a series of autonomic nervous system tests. My GI doctor there explained that they are finding that most people with GP have disorders of the autonomic nervous system...which only makes sense because it does control our stomach. It also has the contol of the other areas where GP sufferers seem to be "shorting out" in. In my case, they did find some damage to my nervous system but my is more sporadic instead of the entire system being messed up. I also can understand this after reading about so many other people who are in much worse shape than I am.
He also, told me that research is leaning toward a link between GP and a virus. The belief is the virus is damaging the autonomic system. At this point they don't know what the virus is though and until they can pinpoint it then they can't find the best treatment.
I'm sure reading on here you have seen how many people have had gallbladder surgery or other surgery prior to developing GP....I guess the next question we all have is...did the surgery itself cause damage (of course, in your dad's case you know it played a role) or did something else cause the gallbladder to misfunction necessitating the surgery and thus the chain of events to follow.
I know you mentioned your dad was taking Reglan. Does it seem to help him? Has he experienced any of the side effects associated with it? It didn't help me but I know it does help some people. It can cause some awful side effects so he needs to watch out for those. It caused me to have twitches and jerks, my neurologists told me at that point that my side effects were very much like someone with Parkinsons. Another medication that some people have had positive results with is Domperidone. It has to be ordered from Canada or New Zealand because is not available in the US. It didn't work for me either and caused muscle spasms, but I have heard good things about it from others. I read where someone else had mentioned the gastric pacemaker. I know getting insurance approval can be a challenge but can be done. I'm not a candidate for it because I have managed to maintain my nurtitional status and weight for the most part in the past several years. I have fortunately never had to have feeding tubes or drains either. I still have my daily 24/7 nausea and vomit everyday, live on Phenergan, Zofran and Marinol and stay exhausted but other than the need for IV fluids once or twice a month I do o.k. compared to your dad and others.
I'm not sure about your dad's insurance and what they will or won't pay for but if they will cover the costs of a major facility like Mayo, I would definitely recommend that he try seeing a GI doctor somewhere like that. I fought going to Mayo everytime I was referred there by my family doctor but it was just purely the expense of the trip and going so far from home when I already felt bad. However, I honestly think it has been the best thing I have done. They haven't cured me...but having that thourough exam, talking to people who are completely up to date on all the treatment options and that could explain things too me in detail, being listened too and not brushed off as being incurable gave me a lot of comfort. It also, makes so much more sense to have all the specialtists work together for me and my body as a unit instead of each specialists only worrying about their area of expertise.
Another facility that does a lot of work with GP is KU Med. Center in Kansas City.
I think you will find that this site will offer you lots of support for yourself and your family on dealing with GP and other motility issues. It seems that someone has had experience with anything that another person has a question about...
I hope I've answered a few of your questions. Feel free to write anytime...I'll try my best to answer from my experiences or someone else might be able to answer instead.
Keep in touch.
Judy

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