GASTROPARESIS don't know what to do HELP!

hello EVERYONE,

this is my frist time here. i would like to know if someone out there has experience what my family is going through. it started last year JUNE 7,2007 my pretty healthy father @ 69y/o had elective gall bladder surgery (had gall stones). so he had a lapchole BUT somthing went wrong in surgery. the surgeon CUT his common bile duct, that needed to be repaired (he had to "repipe"). my father ended up staying in the hospital 3 MONTHS!!! while there he ended up with a bedsore, infection, depression, stress ulcer, couldnt tolerated liquids and later he went home with a feeding tube (g-j tube). the tube was finally removed in nov. his diet was puree and later soft foods. he has been READMITTED 9 TIMES (the latest 02-07-08), his basic problem is GATROPARESIS. just last mouth one of is admits to the hospital the doctors did a gastric emptying study. they found his stomach took 3hrs to empty compared to 1hr. we are doing what these doctors are telling us, small frequent meals, taking meds ect. his frequent admissions has been for nausea/vomitting or GI bleed. i don't seem to know what to do. my dad was about 170lbs prior to surgery and now he is 129lbs. my father didnt smoke or drink but loved to eat. IF SOMEONE could tell me what kinds of food gastroparesis eat i think this would very helpful. right know before he got admitted he was taking 3 ensures, jello, soup, eggs. my poor mom doesnt know what to fed my dad, we don't want him to get dehydrated. are there any herbs or vitamins you guys can suggest. thank you for listening to my story. mariel

By Mags1
Posted February 9, 2008 at 9:12 pm

Hi Mariel. Welcome to the group. I am so sorry that your father is going through so much with GP but if you read through some of the blogs here you will find many people with GP and how it is being treated plus many helpful suggestions. You will find that what works for one may not work for another. Personally I cannot tolerate any of the liquid meals and I subsist mainly on toast and cereal and some days I can eat a little fruit. There is a device called a Gastric Pacer that a number of people on this site have had inserted that helps with the nausea and vomiting but the insurance companies have a problem paying for it as it is considered experimental and not authorized by the FDA. If your dad is on Medicare they probably won't pay for the surgery, at least they wouldn't for me. What I would suggest is that you go into Google and type in Gastric Pacer or Enterra Therapy and find a list of doctors who perform the operation, if there is one in your area maybe you could get a referal from your dad's GI doc to get an appointment or better still, ask his GI doc if he knows anyone in your area who does it. Sorry I can't help you any further than this but I am sure you will get some responses from some of the other members. We are like a family in this group and if we can help each other then we do so. Don't give up hope Mariel, I will keep your dad in my prayers. All the best to you and your family. Mags

By NancyL
Posted February 10, 2008 at 4:41 am

Welcome Mariel.

What a loving daughter you are to explore what you can do to help your dad and your mom through this. My stomach will take days to empty if given solid foods. You will find on this site that we all have issues unique to each of us. But I think you can break it down to whether the biggest issue is vommiting or failure to pass waste. I have been told that my bowels are paralized. And that I must not eat any solids at all. And when I listen I do feel much better. I basically live on slimfast (very nutricious), soy protien powder shakes (fruit juice, strawberries and soy protien powder) and ice cream, yougurt, V8, and thin soups. I can also tolerate baked fish pretty well. And I take senocot tablets and Miralax 2-3 times a day. I take liquid vitamin called Liquidmax Complete Nutritian. It is available at Costco. For a month after my surgery the only "food" I could tolerate was milk chocolate. It melted as soon as it was in my mouth and my stomach didn't realize it was there so it didn't rebel. I also have personal experience with being a caretaker and I know that your mom is going to need as much love and support as your dad. I am glad they have you. It makes all the difference in the world.
-NancyL

By deb1
Posted February 10, 2008 at 12:57 pm

I too had GB surgery in June 07, and developped gastroparesis. I wonder how many people are getting this after lap chol? Did the doctors say why your Dad got this after surgery? I never had any problems eating either. This I know for sure-I never had GP prior to surgery (any form of it).

I'm sorry your Dad has come down with this. There are some great people here who can provide you with hints etc. There are some meds that can help emptying Reglan (bad side effects, Domperidone (must have compound pharmacy, or get in Canada), erthromycin.

GP can be terrible. I live on TPN now which is nutrition through the vein.

Prayers going out to your Dad.
deb

By KE
Posted February 10, 2008 at 2:08 pm

Hi Deb,
I am really starting to suspect that gall bladder surgery performed by keyhole surgery rather than by the old fashioned abdominal approach is not as safe as it should be. There appear to be too many victims appearing on this site. When I was in charge of a fast and furious ladies surgical ward, as a team we did more gall bladder surgery than I've had hot dinners and I never saw a case of GP post surgery. In those days it didn't seem to exist! I think we have to ask ourselves, 'what changed?' Keyhole surgery did not exist in those days. If there is a proven link between laparoscopic gall bladder surgery and GP someone needs to act quickly. I sincerely hope that hospitals are not dragging their feet on this one, motivated by the fact that keyhole surgery, by its very nature will be cheaper than conventional methods. If they are thinking in this manner they are sadly mistaken because if they create a patient with GP, the cost to the health system is enormous.
As I mentioned in another thread, the whole situation is very complex because it is difficult to establish whether the chicken or the egg comes first. It might be that you had gut problems before the gall bladder was removed. What was the reason given to you for the removal of your gall bladder?

Kind regards,

K.

By deb1
Posted February 10, 2008 at 6:42 pm

I agree with you about the lap chol. As for GP before-no way. I ate way too much and never had any sxs. I was even eating 3 weeks post op fine. I had an ejection fraction of 11% on a Hida scan. My initial sxs were upper right quad pain. No naseau or vomiting-nothing with the stomach. It's interesting you mention the "old surgery." When I was in the hospital for a line infection back in January-my nurse said she never saw any probs with "old" surgery but since lap chol she said she's seen more people messed up than she cared to count. Interesting huh?

As for the cost, it cost 3,000 approx to keep me alive weekly on TPN. I'm thankful that we have good insurance. However, I spend most of every day wishing it to be my last. I went from a very healthy person to almost an invalid. I feel bad every day almost every moment. It's bad when you start feeling so bad you can't remember what it's like to feel good.

Deb

By KE
Posted February 11, 2008 at 3:56 pm

Hi Deb,
I am so sorry that you are suffering so much at the moment. The good news is that you have good health insurance. Just imagine what it would be like if you had none. TPN although unpleasant will give you the breathing space to get better. The sooner your health care team discovers what the underlying problem is the sooner improvements in your health will appear. I think that the questions you need to be asking are:
1) Was there any evidence to suggest that you were suffering from a motility disorder prior to gall bladder surgery.
2) Remember that the start of all this mayhem could be a virus that attacks your gut and leads to neurological inflammation and damage. The surgery could just be incidental or could have made your GP worse, due to stress and tissue injury.
3) Is there a possibility that you could have been infected with this nasty virus during surgery or during the immediate post-op period. People catch MRSA and Clostridium Difficile in hospital, why not viruses as well?
4) Is your gastroparesis iatrogenic? That means,' Doctor induced,' because vital nervous tissue was damaged during keyhole surgery. Damage to the bile duct can cause horrible problems and will need specialist repair. Statistically it is 3 times more likely to suffer damage with keyhole surgery than conventional methods. If there is a positive link between keyhole cholecystectomy and post operative GP this must be identified and shouted from the roof tops. Abdominal cholecystectomy used to be a very safe and routine procedure. If that has changed we need to know!
5) Do you seem to be suffering nasty neurological symptoms like, migraine, unequal pupils, numbness and tingling in the extremities. Do read our Judy's posts! (chewy) Does your urinary bladder seem to be affected?
I am certainly not trying to be a doctor here but have suffered motility problems for most of my life and have got used to having to think for myself at all times.
These are just some things for you to be thinking about and getting clear in your mind for when you next see your Doctors.

On a note of hope, I do believe that at long last we are getting a little closer to some answers.
For instance, if we find out that this is initiated by a virus that sits around in the gut causing havoc, this offers us hope of being able to 'get better.' Which is what we all dream of.

Keep on fighting.

K.

By deb1
Posted February 11, 2008 at 4:52 pm

Hello K. You seem to be informative on this issue. You have pseudo-obs? Can you eat?

As for the GP-There's not a doubt in my mind that I did not have this prior to GB surgery. I also don't know if I mentioned right before the GP-I had elevated pancreatic enzymes. I have had an MRCP and ERCP as well as EGD, DGE study. My ERCP showed SOD dysfunction and they cut the ducts.
The GP began before the ERCP. If you had a bile duct injury would it show up on the ERCP? The doctor noted no pathology with bile duct on the report. I'm just so tired of feeling terrible. I go to Wake Forest next week for an EEG, and perhaps a EGD(another one) and another delayed emptying test (not that I"ll be able to do that). I just wonder if there's any hope with all this??? I am so depressed all the time it's just wearing me out. I read about where sometimes the lap chol can intiate the herpes Virus I and this can cause gp.. I know I have this because #1 I get cold sores and #2 it showed on a blood test. I guess I'm thankful I don't have type II. This was checked when I went to a rheumatologist who was trying to figure out why I kept having itching (internal)-not like dry skin or on the outside and right hand cramping/tingling. I wonder if my internal itching, was all related to the ducts or the GB. Since I had the GB out-no itching but itching is the least of my probs., now.

I get some HA's but I think it's from lack of dehydration. I haven't checked pupils but I will. My bladder is not affected-thank goodness.

By docandkate
Posted February 12, 2008 at 12:46 pm

Mariel,

You touched my heart. My two daughters have been very supportive, as you are. IT MAKES a DIFFERENCE!

I had the laprascopic removal of gallbladder and appendix, with no change in symptoms. I know many others write that they have increased gastroparesis symptoms. It took me 6 years to find out why I had such debilitating pain. If you share with others the area you live in, perhaps someone knows of a better Dr. in your area. You can always ask for second opinions. My drs are in San Francisco, and I know they have saved my life. Also, call the customer service on your dad's insurance card. Ask if they have a nurse ( or staff member) who serves as a case manager for catastrophic cases. I have Blue Cross and they do. Also your local medical group may have the same. They can help manage and get answers for you.

I have lost weight, but the best thing I do is make daily blended drinks loaded with vitamins, minerals and protein. Check with nutritional websites, or a local nutritionist, for what dietary needs dad has.

Stay in touch with this group for support and ideas. Have you shown it to your dad?
Kate

By mariel
Posted February 13, 2008 at 9:45 am

hello DEB

the docs say that he had diabetes prior to surgery plus the gall bladder injury they had done, might have caused the GP. no real answers. my dad was just discharged mon 2/11, his 9the readmission. he went home with IV antibiotics. monday they placed a PICC line for the antibiotics. i told the doc if he could go home with oral antibiotics but she insisted they try the PICC line. i was some what upset coz the 7th readmission he develped and abseces in the liver (d/t the bile still leaking from injury), he went home with flagyl and cipro antibiotics orally. that admission was much severe than this latest admission and they decided to place a PICC for cipro antibiotic. i just know my dad has gone through alot and i know he has no more veins for a PICC. but PRAISE the LORD this GREAT nurse was able to place one in with one stick.

this questions is for ANYONE...i was wondering, if you guys with GP eat things you guys arent supposed to eat, how fast do you feel the effect. coz i somewhat seem to see a pattern with my dad. after about 2-3 weeks after discharge he starts to feel awful. my dad takes ensure, soups, jello BUT also takes soft foods (like eggs, rice, mashed potatoes, 1/2 bread of chicken salad, etc.). he doesnt feel anything until about 2-3 weeks. did you guys get "sick" right away? in the hospital my dad's try is diabetic diet with low NA low fat. like for dinner he would have chicken with some kind of sauce and couscose, salad, and fruits. i know before my dad couldn't even tolerated clear liquids. the inital 3 months he had stayed in the hospital he was also on TPN and lipids for about 2 months. then they later placed a g-tube for him to use when he felt nauseated(he would open the clamp and let out whatever was in his stomach). then they placed a G-J tube one for the feeding and the other for the decompression. during this time the doctors told him to eat what he wanted. i guess my dad is doing well compared to before.

my dad takes REGLAN i noticed his depression was getting bad so he started on this other antidepression medication. he has been on PROZAC since july and they added another med to help. i don't see that much of an improvement. i think the depression hits him bad when he doesn't feel well. but he doesn't tell anyone coz he doesn't want to be admitted. we ask him what he is feeling he says he is okay. not until later do we start to hear the HICCUPS, the gurggle in his throat (his REFLUX), the spit ups then later the vomit, and @ times he will vomit large amt of old bld (he develped an ulcer). so the reflux and hiccups i think aggrevate the ucler then bleeds. i feel so bad for him.
i live in southern calif. my parents live in the los angeles county and i live in the riverside county. i was wondering if anyone knows of a good GI doc. i am requesting a 2nd opinion from outside the HMO-kaiser permanente. the process to get an outside referral for them to pay is REDICULOUS. and the funny thing is i really think they caused this whole thing.

also can i get your opinion on something. i requested the 2nd opinion to be a CEDERS SINAI hospital (i have a friend who works on a med-surg GI floor who knows of some doc). ii gave the name and number of the person @ CEDARS. i thought the process was going through to ge the 2nd opinon. but somehow the mediator-ombudsman @ kaiser is asking per the GI doc that we see the GI doc @ the end of the month (this GI doc is "my dad's GI doc", but this guy only say him twice. 1st encounter was when he was in the hosp the 3 months. he did the 1st endoscopy. the 2nd enounter was as an outpt a few weeks ago, and know he is my dad's GI doc. but my dads been sick since june till the present. then my dad "GI doc" wants the outside referal if it gets approved to be @ UCLA. should i agree or insist to go to CEDERS?

i pray everyday that people with this awful condition, GP, will be better or a least have a good day. i am so glad i found you guys. i felt so along. i didn't realiz how many of you guys were out there. EVERYONE have a nice day, we need to take it day by day.

GOD BLESS,

mariel

By deb1
Posted February 13, 2008 at 10:32 am

Hello Mariel:

I'm glad your Dad is doing somewhat better. If he can eat some foods that is good. There are many that cannot. Not that any form of this GP is good. I'm not sure about CA-I live in KY. I'm sure there are people out there that can offer their opinion. I think that's so awful that they injured his bile duct. Is it repaired now? Did you guys know right away that it was injured? Yes, I know diabetes is actually the leading cause of GP-however, gallbladder surgery seems to be some sort of factor as well. Your Dad is in my thoughts. deb

By huskylover
Posted February 13, 2008 at 4:18 pm

Mariel,

Can you please e-mail me at lfshue@gmail.com

I'd like to share my thoughts on this personally.

Regards,
Lillian

P.S. You can read my blog under huskylover's blog called "Gastroparesis & Atrial Fibrillation" and my other postings.

By NancyL
Posted February 14, 2008 at 1:24 pm

I am just replying to how long after I eat the wrong thing I start to feel sick. It varries based on what I eat and how much. I can feel sick 3-4 hours after eating meat, or a few days to a week later after eating breads or cookies, or pretzels. Or sometimes a couple of weeks after adding just a few non liquids items to my daily diet. Don't know if that is helpful. Unfortunately when it takes days to feel bad, I often think I got away with something (I convince myself it's OK now) and proceed to eat more and more forbidden food and end up feeling really bad for up to a week after going back to straight liquids.
-NancyL

By JEM
Posted February 27, 2008 at 11:06 pm

HI Mariel
I am new to gastroparesis and to this board, but I I thought I would give you some of my thoughts. As others have said this condition is different for everyone and what you can or cannot eat depends a lot on the stage that you are in. As I am sure you already know, stay away from fiber and fat. For some, liquids are about all they can tolerate. I myself found I could not even drink Boost or Ensure about 2 months ago. I subsisted on a nutritional drink called Breeze and gatorade. I also worried about losing electrolytes and landing in the hospital again with low potassium again, so I supplemented with E-lyte. I also used a Calcium supplement that I dissolved in water. A liquid vitamin would be helpful too, although I did not think to do that at the time. My gastroparesis began this past summer when I was admitted to the hospital after suffering for 2 months. I found that I was fine without eating, but of course you need to eat. I lost about 40 llbs. Long story short, I got worse and worse and couldn't stop vomiting. I was admitted to the hospital and they put me on reglan and it did stop the vomiting eventually. By the time I got my diagnosis and was out of the hospital, I started to realized I couldn't sit still, I had a lot of anxiety and was having a hard time holding up my head. It was the side effects of the reglan. I got off of it immediately. If your father is on reglan, I would suggest you look into that .....many people do not tolerate it at all....for some it is really a bad drug. If your father is having depression, I would look into that too as a possible side effect of that drug. I understand some people have no side effects, but I would look into it. I was just not my self.....and later I read up about that medication and found that many people seem to have problems with it. I believe that depression was one of the problems. I would suggest that you see a doctor who will consider prescribing domperidone. For me this medication is truely a miracle from the Lord! I am now able to drink the Boost and I am feeling so much better. You also mentioned that your father seems to have a build up of symptoms over a period of weeks. My experience has been somewhat similiar. For instance when I got out of the hospital I I started on soups and moved up to mashed potatoes, and then I had what I call a relapse. I ended up getting worse. Eventually when my stomach calmed down I tried to go back to soups but I never could tolerate them completely. After 2 or 3 days I would start to get sick. I did however find that I could sneak a serving or 2 of soup in every week. But I had to pay attention to how I was feeling. I then had another relapse at Christmas, when I made the mistake of living it up and having soup for quite a few meals and I unfortunately decided to sample some chocolate - several times.I did not feel the effects of it all for about a week, ended up in bed on Christmas day and then got worse from there on. In my case, I suspect I may also
have a motility problem with my bowels as I seem prone to constipation. At any rate, you could try giving your father mostly liquified things like the nutritional drinks, the soups, yogurt, pudding, and so forth and see how he does after 2 or 3 weeks. Then you could gradually add other foods to his diet.. There are several sites on the web that give ideas regarding diet. Just do a search and type in gastroparesis diet. Sorry for being so long, but I hope some of this helps.

By midsomersdream13
Posted February 29, 2008 at 6:31 am

Mags,

It is not necessarily true that Medicare won't pay for the pacemaker. I have had it for two years next year and Medicare approved and paid for it with I would say a week to two weeks. I am in a clinical trial though, so maybe it is helpful to find a University in your area that is doing clinical trials...Hope is the only thing we have and although it is not easy sometimes, we have to keep each others hopes up.

Tina

By JenD
Posted February 29, 2008 at 7:52 am

Hi Mariel,

So sorry to hear about your Dad's troubles with GP. I have post gallbladder surgery GP as well. My symptoms have become very severe recently and I am currently on parenteral nutrition through my veins via a PICC line. It sounds like your Dad may need some other forms of nutitional support. I'm surprised that they removed the GJ tube. This was probably something that could have been really helpful to him long term. Perhaps another feeding tube or parenteral nutrition (TPN) could be tried now. Usually the first thing to try is a NJ tube. This is a feeding tube that goes through the nose and bypasses the stomach down into the intestine. Then he wouldn't have to have surgery again. I'm keeping my tubes in as long as possible because they really do help.

Regarding food options it sounds like you are doing the right things with small amounts throughout the day. It helps to use as much high calorie liquids as you can. I make smoothies with TOfu, protein powders, fruits and such. Ensure helps quite a bit too. I just take several sips throughout the day.

I was also wondering if he has tried domperidone? This drug has literally saved my life. I was vomiting non stop before I started on the domperidone. Now I can tolerate eating small amounts much easier. This drug is a lot safer than Reglan or Phenergan which can cause severe movement disorders. You have to order it from Canada or Europe because it is not available in the US, but it is no problem to get it and for me it really works.

Good luck to you and your Dad.
Take care,
Jen
http://neuronswithdystonia.blogspot.com

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