Gastroparesis

• By Peggypeg
• Posted April 21, 2008 at 6:57 am

Hi Michelle,

Gosh what a dreadful time you are having!

I really hope they can find some new ways of helping you asap and that you can find a way of tolerating some nutrition too.

Is there anything they can do to really clear up your infections and then start again with the tubes? Not too sure why they would "always get infected". Is this always with MRSA?

Are there prescription drinks you can have to help your nutrition problems?

Take care and let us know again soon how you are doing.

Chris
www.mypeggypeg.blogspot.com

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• By michdey
• Posted April 21, 2008 at 8:31 am

Chris,

Thanks for your concern. They think the reason I keep getting the infections, and yes, the majority have been MRSA, is because I am on prednisone to treat my Lupus and that lowers my immune system. I have been on the prednisone for four years and even though we are now tapering down the dosage so eventually I can get off of it, it has wreaked havoc with my immune system and organs. I was told a couple of weeks ago I have the beginning signs of osteoporosis. Anyway, if they put the tube or a port/picc line back in I will probably be covered by an antibiotic the entire time I have them in. We did that once before and it worked for four months but then I got an infection that was resistent to the antibiotic I was on so they are afraid that I will build up antibiotic resistance to most of the common meds and then be in trouble when I get an infection and not be able to find meds to fight it. Anyway, as I said, the doctors are not going to be able to let me go too long because nutritionally I am not taking in what I should be. I am doing Glucerna drinks four times a day to get some nutrition in me but the tube feeds had much more of the vitamins and minerals that I am missing or throwing up each day. Thanks again for your concern--hope you are doing well.

Michelle

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• By chewy1
• Posted April 21, 2008 at 9:49 am

Michelle,
I'm so sorry that you have had such a hard time lately.
I don't have any of the tubes myself but I do deal with the infections anytime I get IV fluids and also if I get anytime of cut or insect bite. I have seen an infectious disease doctor, who hasn't been able to find and explanation as to why I'm so susceptible to these infections.
I find it so irritating that insurance will deny the need for the pacemaker or any other medical intervention. I know that some people might abuse the system but I think in your case and others who have dealt with motility issues it is easy to document that it is a neccesity.
I haven't ever tried Ativan. Is it used primarily for nausea or is it actually for something else? I just wondered because my family doctor is always open to prescribing something new for me when I'm in one of my really downward spirals. Right now I am alternating between phenergan, scopolamine patch, zofran and marinol.
You mentioned the possibility of going to Mayo or Kansas City. I have been to both. I saw Dr. McCallum in Kansas City...he was very nice but wasn't able to help me because at the time I had begun to maintain my weight so he didn't feel I was a candidate for the pacer.
I have also been to Mayo several times. I really appreciate the care I receive when I'm there. I can't say that I have been cured but I do feel that I have been given the best care as possible at this time. My GI doctor at Mayo, listens to every issue and then addresses it by sending me to the specialist at Mayo for their diagnosing...then as a team they work to find help. He also will admit that diagnosing GP isn't the problem...it's finding a medical intervention to help the patient. I also have found that despite the volume of patients that go through Mayo on a single day, that I still feel that my GI doctor and the others take a personal interest and I'm not just a "number" who comes and goes and the doctors move on to the next person. I have been able to call or e-mail the doctor and always get feedback within a few hours. I don't even get that kind of treatment from many of the local doctors.
I don't know that if you go somewhere like Mayo that you would be "cured" but I would think at this point it's worth a try.
I'm also on SSD, so I do realize the financial aspect. A few things that have helped me with the financial area is that some airlines will give you a special medical fare which is much cheaper than regular fare. Also, many of the hotels also offer a patient rate that helps too.
I hope that you can get the help you need soon. I know how frustrated and discouraged you must be feeling right now.
Keep us posted on your situation.
Judy

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• By michdey
• Posted April 21, 2008 at 10:03 am

Judy,

Thanks for your thoughts on Mayo--I am thinking that may be the next step so maybe I will casually just start looking into which one is closest to me, how much airfares are, etc. Do you need to be referred somehow by your own GI doctor or primary doctor? How does that work--do they just write a letter or do they initiate contact for you? I am sure this will be something new for my doctor so if I can get many of these answers for my doctor the smoother this will go. To answer your question about Ativan--it is actually an anti-anxiety medication, similar to valium or xanax which is why it is addictive. When we were last speaking about it my primary doctor did not think it made sense to prescribe a medication that is potentially addicting to combat nausea when there are other options out there and at the time I could not really argue with him. Now that I have used the Ativan however, as I said, I don't care about the addictive qualities--it works better than the Reglan, Phenerghan and Zofran. I have never heard of Marinol--how does that work for you? Does it have side effects (ex: caused drowsiness, dizziness, etc)? If there is another medication that works as well as Ativan and is not addicting I am certainly open to using it at this point but as I said this is the best I have ever used. Good luck with your talk to your doctor. I am going to call my GI doctor soon (I am just waiting for the office to open) and ask him to phone in a script for Ativan because I have been getting sick an average of 3-4 times per day and the phenerghan, reglan and zofran are not working (obviously) at this point. Good luck.
Michelle

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• By chewy1
• Posted April 21, 2008 at 2:47 pm

Michelle,
I just wrote this nice long message and somehow managed to lose it before posting, so I'll try again.
Marinol is generally referred to the pill form of marijuana because the active agent is the same as what is in marijuana that helps combat nausea. Of course, it is legal and you don't have to smoke it! It does work well for me but I try not to use it except as my last resort medication for two reasons...one it does make you drowsy and messes up your ability to concentrate. and the other reason is I don't want to use it to the point it doesn't help. It's sort of my security blanket! It is normally used for patients who are going through chemo to help with the nausea. It does work for me most of the time.
As for Mayo...you can get appts several ways...you can call and request it yourself or by e-mail. But, my primary doctor has always referred me and I think that is why I haven't had trouble getting in fairly quickly. Doctors also can request by phone, e-mail or fax. I know that the last time that my doctor sent me he did the fax and my appt was scheduled by the end of the day. You might want to go to the Mayo websites. They will list the phone numbers and e-mail forms to use...there is also the form for the doctor to fill out and fax that you can print out. That is how my doctor did it. The form has a place where the doctor can mark how urgent it is for you to get in too.
There are two websites that might be helpful
www.mayoclinic.com and www.mayoclinic.org
The second one has the downloadable form...click on the medical professional tab to find it.
I hope that all my rambling makes sense. I'm sure you experience the same problem I do with being on so many different medicines that sometimes I have trouble keeping on track when writing or talking.
I don't know which Mayo you would go too and I'm sure they all have great doctors, but I can personally recommend Dr. Locke at Rochester as being really good.
Reading back over what I have written I sound like a commercial for Mayo. I have had good experiences everytime I go and although I'm not cured I feel like I am receiving the best care there is available at this time. I'm actually scheduled to go back in May.
Let me know if I can answer any other questions.
Thanks for the info on ativan...I will mention it to my primary doctor so he can add it to the "possibilities" to try in the future.
Hope you have a good day.
Judy

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• By deb1
• Posted April 22, 2008 at 7:55 am

Hello-I've been there w/the tubes etc. I still have a picc line. I do not vomit but the food just sits and makes me feel miserable. I have seen Dr. Koch at Wake Forest. There's not much they can do for GP-I'm sorry to say. In fact at Wake-they gave me a GP diet plan and said to start that. The gastric pacemakers usually work for people with extreme nasaeu and vomiting but not everyone. Dr. Koch was very honest-GP is tough to treat. There is no magical cure. I will say I've heard of people who've had their GP go away-(esp., the ones who vomit alot).

I use Ativan and it was the only thing I found that worked for me-I love it and could care less if I'm addicted to it because it is not a narcotic and really it's basically a harmless drug considering things like Reglan.

I did read about a anti-depressesant (sp?) that is suppose to help with GP-remeron.

I tried to get into Mayo with a doctors referral and they told me they really couldn't do anything for GP so I was not seen. However, I know some people have gone and thought it was great. There is suppose to be a good motility specialist in PA. (Dr Parkman)

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• By michdey
• Posted April 22, 2008 at 10:00 am

Thanks for your comments. I'm glad to hear someone else has found success with the Ativan. It is literally the only thing that worked for me during my most recent hospital stay. I am going to pick up the script this afternoon to have it filled. I have high hopes for it to work because I have been absolutely miserable with the nausea and vomiting. I have never heard of Remeron being used to treat GP but I will keep that in the back of my head just in case it is needed for future reference. I am surprised you were turned away from Mayo because according to their website, treating GP is a big part of what they do at any of the three facilities. I have heard Dr Parkman's name many times now so I am going to definitely look him up if we decide to proceed with the gastric pacemaker. As I said before, I have been told that I have no other options left available to me besides the pacemaker so that is why the insurance denial has me so upset! Anyway, I hope today is a good one for you. Take care!

Michelle

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• By twin
• Posted April 22, 2008 at 12:40 pm

Hi Deb,
I was at my doc. last week getting my pacer adjusted, and he prescribed Remeron fpr me to help with the nausea, I haven't taken it yet because he wanted me to wait a week to see how the pacer adjustment goes? I'll keep you posted, when I start taking it. Karry

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• By Mom24
• Posted April 22, 2008 at 1:08 pm

Hi Michelle,

Sorry you are having such a hard time. I feel your pain with insurance denials! My daughters IV meds are not being covered by insurance!

My daughter was given IV activan in the hospital for severe anxiety caused by another drug. Almost immediately she was asking to eat, and kept it down, liquid bland diet, but eating! She was on TPN at the time. This helped her get to go home. She wouldn't leave without a rx for activan. I don't think the Drs knew about this use of the drug either! Nobody mentioned it being addicting. They were more worried about the phenergan and demeral she was taking, because in additon to being addicting they can also slow down the GI tract.

We also discovered this about the cymbalta she was on. It's in the fine print! No doctor mentioned this either.

Do you know what caused your GP. My daughter was dx with ideopathic GP, but we now know it was caused by a tick borne infection. She is still undergoing IV abx for the TBI (4 mo now), but at about 3 months she was able to eat again. Search for the article "Bell's Palsy of the Gut".

When she was hospitalized she was in great pain also. At home with the help of the activan she was basically on a liquid diet and some soft foods like pudding & yogurt. The magic bullet (Walmart) was awesome. I could puree things for her to eat. Her gut was working by gravity only! Dehydration was a constant problem. And NMH / fainting caused by dehydration.

Thankfully the IV abx kicked in and her eating and nausea slowly improved to where she eats many normal things now.

Next week she goes to participate in a National Institute of Health study on gastroparesis. They are making a data base of GP patients to study. I am excited they will have a success to follow. I think they follow her for 2 years. Thanks for reminding us to mention the activan!

I think they are able to use some drugs not FDA approved, also. I know someone who is greatly helped by this drug. She has cyclic vomiting and GP. There are five locations participating, some you mentioned. It's a 2 yr wait to see the motility specialists if you don't qualify for the study!

Hope you find relief! The people doing the NIH study said "I guess you've discovered that all that doctors know about GP is how to diagnose it"!
They are hoping to change that!

Love, Mom24

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• By michdey
• Posted April 22, 2008 at 3:12 pm

Mom24,

Wow--another success story with Ativan. Maybe we should spread the word! I was able to eat softer foods while in the hospital after taking the Ativan as well so I am hoping it will help me at home as long as I can keep the pill down. I just picked up the prescription (not covered by my insurance) and it cost me $50 but it is so worth it if it works. I hope your daughter feels better soon. The doctors feel my gastroparesis was caused by a combination of my diabetes and Lupus. Thanks for sharing. That is so exciting that the NIH is doing a study on GP and that your daughter will be a part of it. Keep us updated on how it goes!

Michelle

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• By chewy1
• Posted April 22, 2008 at 5:36 pm

Michelle,
I'm just like you on being shocked that Mayo turned down help to Deb. She and I have discussed this before. I can't help but think that somehow her doctor was given bad information. I haven't ever heard of anyone being turned down before...I was up in MN in January for a pelvic floor retraining program and the therapist and I discussed her experience with trying to get in. My therapist was really surprised because she said that Mayo doesn't turn anyone down...that they see people for things as simple as flu or ingrown toenails.
My doctor there did admit that they didn't have the magic bullet for the problem but they could and would work on giving patient's with GP as much help as possilbe for the symptoms until the cure is discovered.
Good luck with whatever you decide to persue.
Judy

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• By michdey
• Posted April 22, 2008 at 8:43 pm

Thanks for the support Judy. I have a doctors appointment with my primary on Friday and I am going to bring it up to see what his reaction is. I'll have to look up air fares and I am hoping my mom can stay with my cousin in Phoenix. Out of the three facilities, I think I would be going to AZ because I do have family in the area for support for my mother. How long does a visit usually last for you when you go? A week? Couple of days? Do you usually get admitted to their hospital or do you get a hotel room? Thanks again for all the info--I'll keep you in the loop.

Michelle

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• By chewy1
• Posted April 23, 2008 at 12:36 am

Michelle,
They tell you to plan on 3-5 days. But, it depends on how many tests you have to have done and how many other specialist consults they send you to.
My first trip in 2001 took 8 days (including weekend where they didn't do anything). They try to do it all in the week so people don't have to stay over but can't always work the schedule. In my case, I would have been done on the Friday but they ran into trouble on the last test and it was too late to make my final consult with the GI.
In December 2007, they told me to plan on the 3 to 5 days again but because of urology consults and neurological consults it was going to be almost 2 weeks. The problem though was the neurology dept was so backed up that I couldn't see the neurologist until the end of the second week. The good thing is that my GI doctor was able to schedule the neurology tests that they wanted done and then he did the consult with the Neurology dept which allowed me to go home at the end of the first week and he called me with their report.
During the test that week they discovered that I had developed a pelvic floor dysfunction and asked me to return for therapy. Since I was going to be there for 2 weeks for the therapy they used that time to finish some urology tests.
So, my best advice would be to plan on a week for sure but you need to be prepared for it to take longer. It will depend on what all your problems are...they try to address all your problems, to see what , if any connection to each other and the different specialists are able to all work as a team to develop the best treatment plan for you.
I have always stayed in a hotel. I don't think they admit patients to the hospital unless it is a medical neccesity at the time.
I don't know about Arizona but in Minnesota, most of the hotels do have special rates for patients. Some of them appear to be very good...but, I don't know much about the cleanliness or amenities. I usually pay more and stay at a hotel that is right next to the clinic...I can just walk out the front door of the hotel and practically into the clinic, or can take the hotel elevator down to the subway level and never have to be out because it connects to the clinic. The other good thing about that is if there is some time between tests I can go back to my room and rest or whoever is with me has that option instead of just sitting in a waiting room.
Also, most of the hotels understand that as a patient that you don't know how long you may stay so if you have to extend your stay it's no problem. I always just tell them when I make reservations how long I think I will be there and explain it might be longer and they are able to put that note with my reservations.
I'm sure AZ is the same as far as transportation. Most hotels have a shuttle that runs to the clinic all day and the Clinic itself has a Patient Shuttle that takes you to the hospital that is a couple of blocks away. They run like every 15 minutes so it is very convenient.
When you check on airfare, ask about special medical fares to Mayo Clinic...you might want to ask if they will waive the change fee since you are a patient and you may not be able to make your return trip the day you have it scheduled for...I mentioned this because in Dec. I remembered to do that and it was no problem but in January I had forgotten so ended up having to pay $100 change fee.
Something else I meant to mention earlier...I'm assuming that you haven't had experiences with Mayo so if you have I'm sorry for writing so much...anyway, I was totally impressed with the efficiency of the Clinic. On the initial visit with the GI doctor, he will do a thourough history. He will spend close to an hour with you...or however long it takes for him to get all the information he wants. Then he will decide what tests he feels needs to be done, will decide if you have any problems that requires a specialist in another dept. then he will give the list to his "scheduler". Before you leave, your initial consult, his nurse or scheduler will give you a print out of your schedule of appts for the week. Chances are you will go directly from his office to have a test or procedure. It is also amazing because you see the volume of people and you walk into a waiting room which is packed and you think it will be a long wait...but very seldom have I ever had to wait over 15-20 minutes for any scheduled appt. And if for some reason it will be longer they will come out and either tell you how much longer or will reschedule so you don't just have to sit there.
The entire Mayo staff..from volunteers, receptionists, doormen on up to doctors are very kind, compassionate and helpful. I don't think I have ever seen any employee that was rude or hateful to anyone...and the interesting thing is I think it brings out the good in the patients and their family because I have noticed that total strangers will stop to help someone with trouble getting around, or offer to show someone where they need to go, to help someone who has a language barrier, etc. It seems like if you are on a shuttle or in a waiting room, someone will start up a conversation and before long everyone is commenting. By the end of the week, I have seen some of the same people so many times that we feel like friends.
It would be nice to have family support nearby. My mother usually goes with me. I know it wears her out but she insists on going to every appt with me. She worries I will get to sick to make it back to the hotel room and wants to be right there. When I go up in May though my 23 year old niece is going with me. She will have graduated college by then so it is sort of a "vacation" for her.
O.K. I'm not sure if I answered all you questions or not. I know I jumped around a lot but I kept thinking of something else to say and didn't want to forget.
I think from all my answers that you can tell that I am a Mayo fan. The funny thing is I fought with my doctor and family about my first trip in 2001 and then again in December last year...but both times I came home with a more positive attitude.
I hope that you will have a good experience too if you go. I think it just gave me a little more security to know that I have been checked head to toe and that some of the best doctors in the world were taking care of me. It also gave me hope hearing the doctors at mayo tell me that they were working to find the causes and the medicine or treatment to resolve this condition.
I guess I should quit writing before my battery goes dead. Please do keep me in the loop.
I would never have dreamed that I would stumble on this website and find so many people who truely understand and have become so supportive and good friends.
Judy

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• By michdey
• Posted April 23, 2008 at 12:29 pm

Judy,

Thanks for your reply. I looked up Mayo-AZ yesterday and looked around the site a little bit. It say that a big component of what they do is treat gastroparesis which is why I was surprised they turned down Deb. Anyway, it looked nice and clean and peaceful from the pictures. I will let you know what is going to happen. We are meeting Friday for a "pow-wow" to determine my next week step. I'll keep you in the loop. Thanks!

Michelle

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• By mariel
• Posted April 24, 2008 at 6:48 am

hello MICHELLE,

sorry to hear about your many obsticles you are going through right now. my father was dx with GP, he too had a G-J tube but later was discontinued. while he was hospitalized for 3 months he ended up with MRSA. so everytime he is admitted he has that dx/hx of MRSA. i think his MRSA was @ his wound site (he had surgery for gall stones and the surgeon cut his common bile duct MISTAKE that ended him up in the hospital for 3 months. since then from sep-march he has 12 readmissions). right now he has a PICC line, where every night i hook him up to TPN for 12 hrs. he is doing good. we have NOT been readmitted for about 4 weeks now.

i hope you are able to get the help and medical you deserve. you are right you will be needing some kind of nutritional support, coz if you are not keeping things down you may get dehydrated. you are in my prayers....good luck....GOD BLESS....

mariel

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• By DK9497
• Posted May 9, 2008 at 4:16 pm

Michelle,

I just recently met with Dr. Parkman at Temple University Hospital. He seems extremely knowledgeable about GP and is a big believer in the pacemaker. Additionally, he is extremely up on all the most recent research. If you are not able to find a doctor closer to your home, he is definitely a good choice.

Good luck,

Dawn

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• By michdey
• Posted May 13, 2008 at 9:53 pm

Dawn,

Can you give me contact information for Dr Parkman? Pennsylvania is about the same road trip as NH would be and I definitely would like to go to someone who is knowledgeable and up on on the most recent research. At this point I am trying to decide whether to have the J tube put back in. My GI doctor wants it back in but my primary does not because he is afraid I will get infected again. Thanks!

Michelle

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