Gastroparesis

• By chewy1
• Posted December 14, 2007 at 9:54 pm

Audrey,
Sounds like you have landed in the right group. It sounds like your trouble began about the same time as mine did and we are about the same age. Wasn't exactly our plan to deal like this so early in our lives was it? It sounds like you have most of the same symptoms as many of the rest of the people on this site. Seems we all have some in common, and a few different. I also deal with the fibromyalgia, bladder, bowel and IBS in addition to the motility problem. There are a few of us who have eye problems too..ours seem to be a problem with the pupil in one or both eyes being dilated all the time. Do you also suffer from Migraines? We have found that to be a real common link for most of us too.
I'm sorry your insurance won't pay for the trip to Mayo. I have never really understood insurance companies and their ideas. You would think that if you could go to one place, have several dr's working together to make you better, it would be cheaper on them in the long run than dealing for years with several different doctors who are only concerned with their area of expertise...and still having to pay for all the hospital stays and such.
Does your insurance have an appeal process...or did you try that too? My insurance luckily will pay for Mayo, but in the past my doctor has had to appeal in order to get them to pay for certain medicines.
I hope that you do find help after the holidays. I know how frustrating this all is...but there are some great listeners and supporters on this site and also some good advice!
Hang in there.
Judy

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• By Char
• Posted December 15, 2007 at 9:59 am

Welcome to the group, I hope it turns out to be helpful for you. It's a great place to find support from people who are going thought the same thing, or something very similar to you. Even if you have a great support system with family and friends there is something really nice about also having people who know what you're going though to offer their support.

You sound similar to me, except I don't have fibromyalgia. I also have eye problems. Mine is with my pupils, and it has always been lumped in as something related to my gastroparesis. My has progressed to my bladder and furthur down my intestines. Do you deal with migraines? I'm also on a feeding tube, but being able to tolerate feeds is an improvement for me, because I spent a few years on TPN. Now, with my pacer, I'm able to tolerate feeds again.

I hate that you insurance has said no to Mayo. I can't stand how someone can sit in a room and having never laid eyes on you or talked to you they can make such potentialy life changing decisions about you. I would recomend appealing it. Thankfully, Mayo is one thing we didn't have to fight my insurance for, after a letters from just a couple of my doctors they approved it. We have had to appeal many thing before. We are fixing to have to start another appeal process, becuase they denied me botox.

What meds have you tried for your gastroparesis? Have you gotten any relief from any meds.?
I hope you have a good weekend,
Char

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• By chewy1
• Posted December 15, 2007 at 10:20 am

Char,
Are you enjoying your time off school?
I guess it is just evil of me to sometimes wish that the people who make the decision in the insurance offices about what someone can and can't try for their health, would have to spend at least a few days with the same problems they are denying help for!
I have the biggest problem with my old insurance not wanting to pay for medicines or might pay but won't pay for the prescribed amount from the doctor. It makes me so mad because the doctors have gone through years of training to prescribe these medications, so who are these people to decide it's not appropriate.
I can't believe that any insurance would deny you botox or anything else that might help you. Good grief, it's not like they don't know by now you really have a problem and aren't making it all up! It is so STUPID!
Have I ever asked you if anyone has ever had you try special contacts for your pupil thing? They had one made for my right eye...it's supposed to block some of the light (it's colored with only a normal size pupil size in the middle,) Anyway, I've never worn glasses or contacts so I had a hard time adjusting too it. I always felt like there was a film over my eye and made my vision worse. I did go back and they decided that I needed a little bit of a prescription in it (my vison had worsened in the time it took to get the contacts). I finally got the new contacts but I haven't worn them in months because I still don't see well through it. The reason I thought of it was this morning I decided to try it again...it still feels strange but wanted to try again.
The theory is it will reduce the light and even up my pupil sizes, thus reduce migraines!
I just wondered if you or anyone had any experience with these, if they worked for others or not. These I have are just temporary...supposedly if we can ever get it adjusted just right they will have a permanent one made (very expensive). I don't even wont' to bother to keep trying to get this one right if they haven't ever worked for anyone else. Again...these contacts were a first for my eye doctor so he is just experimenting too.
Well gotta go, need to run a few errands before the next snowstorm hits this afternoon.
Judy

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• By audrey
• Posted December 15, 2007 at 12:01 pm

Judy

don't suffer from migrains but i get pains in my head that last 30 seconds and through the course of the day i can get them 10times in a whole day .I also have weakness on my left side I will be seeing 2 new drs. after the holiday. I'm sorry to here you are going through this to it really sucks .I want to go to a place that all the drs. are in one place .But where mine are there not too bad there across the street from each other. I will see after the holiday.I was invited to a christmas party yesterday and it felt funny watching everyone eating but the strange thing is that I don't feel a craving, or desire, nothing I't is though I am looking at cardboard nothing phases me.. I am glad that the insurance company is paying for the mayo clinic . Which one are you going to . I wish you a happy holiday and hope for changes for the better in our future.
Good luck
Audrey

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• By Char
• Posted December 15, 2007 at 3:04 pm

Judy,

I have the same feelings about the insurance people making such important decisions without knowing me. One of the doctors that approves things knew my case very well and would approve whatever I needed, so my case manager would always make sure he was the one to review and approve anything I needed, but he died suddenly about a year ago. We haven't had much trouble with anything, except my pacer. We went through the appeals process for that and it was approved. Every so often my doctors will have to write more letters and make more calls about my zofran and other meds. Sometimes it will take a little work, especially to get them to give me the dosage I need. I just think that if a doctor that knows me and has been taking care of me for as long as my doctors have says I need something why should these people who have never seen me be able to say no. They aren't going to go around doing these procedures, surgeries, or giving these meds. to people that don't really need them.

I've never had any contacts like that. Who perscribed them, your eye doctor or neurologist? They can make them with your perscription in them? I have bad vision so I wear contacts all the time anyways, but they are just normal contacts.

I hope you got your errands done before the snow. My friend had to leave yesterday afternoon instead of this morning, because she was heading to Ohio and they were expecting several inches of snow to start this morning. Its been in the 70s here until yesterday.

Have a good weekend,
Char

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• By chewy1
• Posted December 15, 2007 at 7:42 pm

Audrey,
It really does help if your doctors are willing to consult with each other and work together. Maybe since your doctor's office are so close they will do that. My family doctor is great but he doesn't get much help from the specialists. They all want to concentrate purely on their area and seldom will share info with him even after he refers me to them. That was why he finally sent me to Mayo. The thing is...these other doctor's may not realize but I never follow their "orders" until I have checkend it out with my family doctor to get his opinion and for him to make sure what one is telling me to do isn't going to interfere with what another has done.
The Mayo doctor's I have seen have been great to consult with each other and come up with one plan of action. I just got back from Rochester and will be going back in a few months.
You are probably lucky not to get the cravings. I do get them and when I give in to temptation I will pay for it. I just try to plan when I do give in that I'm going to be able to be home in time for the results!!!
That is awful about the pain in your head. Do they have any idea why it is happening? Migraines are miserable but I think having the sudden pain off and on all day would be awful too. Is the pain in your head on the same time as your weakness? My migraines are always on my right side and most of my pain and other problems are usually worse on the right side.
I really hope that the doctors are able to come up with a good plan of action to find you some help. I am always constantly amazed at how many people are dealing with motility problems of such various degrees.
Judy

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• By chewy1
• Posted December 15, 2007 at 8:03 pm

Char,
It is so crazy how the insurance companies decide things. I know my doctor gets very irritated at them when they try to deny me a medication or say I don't need the dosage he prescribes...and then like you said after they take the time to write several letters of appeal then the insurance gives in...it's almost like they are playing a game to see if they hold out long enough that the doctor and patient will quit trying. I have been using the same pharmacy for several years now and am in there so often that I'm well known by all the pharmacists who work there. They get so mad about it too...and have at times just given me a few pills to get me through until we get finished fighting the insurance.
I think though I'm more burned over them denying you the botox. I can't believe that they aren't willing to let you try it...I mean you have had everything else and who knows it might be the "right" thing for you in the long run you will be saving them money...it has to cost less than another hospital stay!!! It just makes me so mad for you!
I'm glad your friend was there to help get you through the disappointment.
My neurologist did send me to the eye doctor when she thought I had the Adie's Tonic Pupil. They did tests and confirmed it and first just told me to use the special eye drops but when the frequency of the migraines continued the neurologists sent me back and requested that they check into the contacts. I haven't had vision problems except for the typical getting older stuff and starting to need reading glasses so my first contacts were not prescription, however they had trouble getting them and it took a couple of months, by that time my eyesight had deteriorated to the point I need a very low strength prescription, so yes, they are able to add your prescription to them. I just think my eyes have gotten worse still and I may need a little bit stronger ones. Of course, I guess it's a good thing they are the disposable ones right now since I managed to lose the one I was trying to wear today. I guess I will give it another try tomorrow.
We have about an inch of snow. It was nice pretty flakes. It is pretty cold right now too. I think we still have chance of more through tomorrow so don't know how much more we will end up with.
My oldest niece and her husband are in Phoenix and supposed to be back tomorrow. Well, she is anyway, she and her mother-in-law flew to Phoenix, but her husband and his father drove out. I'm just hoping that none of them run into bad weather on the way in...I know Oklahoma has been getting more than we have and they are flying into Tulsa and driving home (about 2 hours).
Well, I think I had better go get the heating pad, I'm starting to hurt!
I hope you have a good weekend too.
Judy

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• By finallywell
• Posted December 17, 2007 at 6:47 am

Hey ya'll!

I found it very sad that all these years later the insurence companies still don't get it!! The specialist who I credit with saving my life almost didn't get to see me at all. The insurence company didn't want to let me go because another specialist had already said I had an eating disorder so thye didn't see the point. My mother and PCP fought and won, but still it's scary what could have happened if I hadn't got to see him.

Audrey I know what you mean about the food. When I was sick I would go to stuff with my family and not even care that we had food. It was like food had given me so much trouble that I didn't even like it anymore. I started to believe I realy did have an eating disorder. Even after I knew I was gonna be OK it took me years to start eating certain foods again.

I hope things turn out OK for you.
Marie

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• By Sissy1
• Posted December 17, 2007 at 5:25 pm

I ws just wondering, when you went to Mayo, did they recommend the Pacemaker to you. What are they having you come back in a couple of months for? It is so weird. Everything is happening today for me. I got a call that my Ins. approved the Pacer, then a little later, I got a call from Mayo that they had an opening for me Feb. 18. Now I don't know what to do. I'm afraid to postpone the Pacer surgery, but I would like an opinion from Mayo clinic about my condition. Any suggestions from you all out there.

Thanks, Sissy

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• By chewy1
• Posted December 17, 2007 at 5:58 pm

Sissy,
That is amazing that you are getting so many responses in one day. Do you already have an appt for the pacemaker and someone to do it or will you still have to figure all that out? I just wondered if it was going to take awhile to set up the appt for the pacemaker if you would have time to go to Mayo and see what options they might have to offer too.
No, the pacemaker has not been given to me as an option. My weight has stablized the past few years despite the nausea and vomiting continuing. My family doctor wants me to have the pacemaker but because of the stablized weight my insurance will not approve it...probably would be a battle with them anyway if my weight was to again drop.
I am going back to Mayo because when I was there a few weeks ago they discovered I had developed a pelvic floor dysfunction. Basically now when the food does dump (right now it's dumping too fast) it gets trapped in my intestinal tract because my colon and bowels have stopped working correctly. I am going back to try biofeedback therapy to try to retrain them to work correctly. If this doesn't work then I may face surgery at some point down the road. I also have urinology problems too which they will be doing more tests on while I'm there.
I will tell you that I don't know a lot about the pacemaker, but Mayo is an amazing place. If there is anyway you can work out the opportuntity to get their opinion too, I don't think you would be sorry. I do though know why you wouldn't want to take the chance of postponing the pacemaker surgery once it is already being worked on.
Is it o.k. for me to give Char your e-mail address too if you don't hear from her in the chat forum?
Keep me posted on what you decide to do!
Judy

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• By Sissy1
• Posted December 17, 2007 at 7:08 pm

Sorry, I hadn't read this message when I sent you one a couple minutes ago. MY appt. for the pacemaker is set for the 3rd or 4th Friday of Jan. They said probably the 19th. Yes, please give Char my e-mail address. I would love to hear from her. I am sorry you are having so many problems. I had a too fast test not too long ago too,. and they referred to it as dumping. But, I still have the same symptoms when I eat, Bloating, Pain and nausea. Seems to be pretty common with most of us. I hope if I get the Pacemaker, it will regulate the too fast, or too slow situation. I am going to read up on it a little more, or if anyone else knows, have them let me know. Talk to ya soon, Rhonda

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• By chewy1
• Posted December 17, 2007 at 8:47 pm

Rhonda,
I'm sorry you have these problems but it is actually nice to read that yours has varied from the too fast to the too slow stuff. I had always been told my was too slow until the last scan at Mayo and then Dr. Locke said it was too fast! Said it was dumping as soon as it got into my stomach and my intestines couldn't handle it but instead of having diahreaa like most people would have I had the additional problem with the pelvic floor dysfunction and the food was actually trapped and that was the cause of my pain. He did tell me that he symtoms of too slow or too fast would be the same.
I wasn't sure if this was something unique with me that it had changed, or if it was like I suspected and it changes between the two extremes at different times. Now, after reading yours I suspect it does change at times.
That my explain my episodes of going for a week without needing or wanting to eat and then other times being so hungry I could eat a horse. Of course, either way, I still don't keep it down, but it might explain that when the food is not dumping then I'm not hungry but when it does I am hungry.
See, you just helped me without trying because I now have another theory to investigate!
Thanks,
Judy

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• By Sissy1
• Posted December 17, 2007 at 10:22 pm

Judy,

Thanks so much for all the info about Mayo and the fast and slow emptying. I have not asked my GI Dr. if the Pacemaker would help regulate my stomach whether it is working fast or slow. Did Dr. Locke mention that to you? Do you have a lot of vomiting or more nausea? I do not vomit as much as I have read that some people do, but If I eat hardly anything I get really bloated an hour or so after eating then pain, then nausea. I take Phenergan when I get nauseated because I hate throwing up. It sounds like some pacemaker reciepients have a lot more vomiting than I do, so I just hope each case is a little different and I am doing the right thing. My GI doctor hasn't come up with any other solutions and he is the only one around here that does the Pacemaker and has a research Lab in his office building. I became so weak from not being able to eat and weighted 93 pounds that he put me on TPN thru a PICC line.
So did you say that Dr Locke did not recommend the Pacemaker for you? Sorry, my memory is terrible. I am just so eager to get feedback from you and anyone else that can help me make a decision. I guess if it doesn't work, it's not like I can't go to Mayo at a later time. I am just tired of it all, as I am sure you are too. I hate wasting anymore time with this stomach problem. I just want to live a normal life and eat like everyone else. I'm sure you do too. If you find the chart you were talking about, I would love to see it. I will talk to you soon. Thanks for sharing.

Rhonda

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• By chewy1
• Posted December 17, 2007 at 11:18 pm

Rhonda,
No we did not discuss the pacemaker at all for me. I didn't ask about it because I had been told by the doctor in Kansas City that unless my weight dropped really low that I wasn't a candidate. I don't know how much Mayo uses pacemaker surgery either. Since I'm not a candidate it just wasn't discussed. The only one who has really pushed for the pacemaker for me is my family doctor here at home and like I said, he doesn't really know much about them, he just is trying to find something!
I am nauseaus 24/7 and throw up anywhere between 1-10 a day. I consider it a good day if I only throw up twice. I stay bloated and I have a lot of pain. I really don't know why I can maintain my weight because I don't eat much and then when I do I usually do thow it. up. I have been on several different medicines that the doctor's have told me are responsible for it. That is one reason my family doctor gets so frustrated over them saying I don't qualify for the pacemaker with my weight because he said if he took me off the medicine I would lose the weight, but he won't take me off it just so I can have surgery...because who knows when or if I could ever actually get insurance approval and he said he can't in good conscious let me suffer and deteriorate just to get the o.k. for it.
I alternate between phenergan and zofran for the nausea. I think the phenergan works best for me though and it is much cheaper. I also take Marinol when it gets really bad. I don't know if you have had Marinol, but it is marijuana in a pill form (legal of course with a prescription). It works great for stopping the nausea and vomiting for awhile. But, the bad part is it really makes me really loopy. I can't complete a thought or sentence when I'm taking it. I feel like I'm not in my body anymore and I don't feel in control of my self. Sometimes, I guess that can be good but it isn't something I am comfortable with...so I don't take it except when things get bad. It is one of the medicines though that does keep the weight on. It definitely increases the appetite. However, that's not really good either even for those of you who need to gain weight because, it makes me eat more...so then I end up throwing up at least one more time.
I really think with your weight, it is a definite possibility that Dr. Locke would still recommend the surgery or there may be some other more drastic options for you.
I think that is one thing that makes motility things such a hard problem for doctors though, we have all the same symptoms..with maybe a few minor differences here and there, but we all react so differently to treatments and there are so many different degrees of severity. It's not really a cut and dry problem!
You are right about Mayo still be a possibility if the pacemaker doesn't work. I know that Char has said it takes about 6 months though before you really start seeing a difference and it won't solve all the problems...or at least didn't for her.
It does sound like your doctor though has a lot of experience in pacemakers and if he has a research lab there too, I'm sure you are in good hands. I am sure you are ready to get it done and try to get your life back in order.
I would love to be able to get myself "healed" too. I have hope that it will happen one day. My cousin who is also a member on this site (finallywell) was diagnosed with GP when she was still a teenager. She was really severe like you and Char for awhile. She was very fortunate though that Propulsid was still available when she was first diagnosed and it changed her life. She stopped taking it when she became pregnant and was very surprised because had done really well since then. So, it is very likely they will find a medication someday that will help. I'm fortunate right now that I'm holding steady at this point except for the occassional uncontrollable spells so I can hold out longer for that miracle medication. It doesn't sound like you have that option at your level.
I am so tired of always being nauseaus and in pain, but I realize after reading your story and others that I don't have a right to feel too sorry for myself.
Have you been able to maintain a job? I ended up having to give my job up in 2001. It was the hardest thing I had ever done to turn in that resignation. I loved my job. I taught Kindergarten and First Grade. I was so determined to return to work that I refused to apply for disability for a few years. Then after I was denied the first time, I took that as a sign that I was going to go back to work after all. But, eventually the doctor and my family are made me realize that even though I might eventually be able to go back to work that until that time I had to have some financial assistance. I finally after being unemployed for 6 years got my disability in 2007. I cried though when the judge told me that I definitely should be on disability and that there was no way in my current health I could work ,because it all seemed so final. But, I have found since I started having more money coming in each month (I was getting a very small amount each month from teacher retirement disability) that my stress level has improved.
It's still hard though to know I'm not able to work. I finally convinced myself though that it wasn't final...so I did recently complete two online college courses and some online workshop classes so that I can keep my teaching certificate active. Having that piece of paper saying that if I do get better, I can still teach really helps keep me going.
I think I read that you are married...is that right or am I thinking of someone else? I'm not married (never have been) and I can't decide if that makes GP easier or harder. In some ways, it seems easier because I don't have to worry about a spouse, kids and keeping a family going, but then again, it would be nice to have that support system too.
I do have a wonderful family, my parents live next door to me, and my brother's and their families live in the same neighborhood. I have two beautiful, wonderful nieces (23 and 16 ) that are like daughters too me. they come to visit almost everyday and if they dont' come see me they call at least once a day to check on me.
I think finding this group though has been one of the most rewarding things for me. I have learned so much for everyone and just having someone to vent too and share stories with makes me feel so much hopeful too. I'm not the only one out there fighting the unknown!
I can't believe how many times lately I catch myself telling someone about something someone on this site has said...I say it just like we are all old friends who have known each other for years. I just feel so much better after I have read a post from someone. It also makes me feel like there is a purpose for me having this condition too now, because I can hope that maybe something I say to someone else might make them feel better too.
I'm really anxious for Char to talk to you. I did send her your e-mail address and made a post to her too. I noticed that she had commented on a post of yours earlier today though about the pacemaker...I think it was under the "pacer" discussion. If you look on the home page under discussions you should be able to find it and then you can send her another message.
I bet your head is just spinning right now. I'm sure you are running between scared, confused and excited.
I'm acutally very excited and nervous for you. I do have good vibes about things working out for you no matter what you decide. It seems like it has too for both of these opportunities to pop up in the same day!
I'll try to find that chart and send it tomorrow.
I'll talk to you later,
Judy

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• By Char
• Posted December 23, 2007 at 3:28 pm

Judy,

I'm glad you have a good pharmacy too. We use a drug store that is a family owned place, not a chain brand place and they are great. If we are waiting on insurance to approve some more of a med or something like that they'll give us some to make it till it's taken care of. My supply/ infusion pharmacy is also great about doing the same thing. A few years ago the insurance said I didn't need the bags that I use to vent my g-tube and they keep getting me for them while we were getting it all worked out. They also keep things in stock and order supplies that none of their other patients use. A few years ago when I was on the antifungals after my heart surgery it was a 2x's a day infusion and couldn't be mixed more then 24 hours before being used, so the pharmacist would go in and mix it every day for the entire 6 months, including Thanksgiving, Christmas, New Years and weekend and then deliever it so their driver didn't have to come in on the holidays. He postponed a vaction till I was off it. The only times he got a day off would be when I would be in the hospital, but then he just had to make other antibiotics in addition each time I would get out. I'm so thankfull I've been blessed with such wonderful caring people who are always willing to go above and beyond to help me out.

I hope your family was able to get was able to get home okay with the snow. Does it look like you'll have a white Christmas? We just went from upper 50's and 60's last week through yesterday to 43 today, but I seriously doubt we get snow. I love snow, but I'm always cold anyways that cold temps. like this are hard. I just keep layering on clothes.

I hope you are able to enjoy Christmas and are feeling well,
Char

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