Learning to live with gastroparesis

Hi,

I am a 40-year old female living with gastroparesis and reflux. I cannot tell you how much this illness has changed my life. I can no longer go out for a "casual" bite to eat or a cocktail. Each day I wake up not knowing if it is going to be "good" day or a "bad belly" day. My lifestyle has changed and I find that the chronic nausea and stomach pain interfere with every aspect of my life (recreational, social, business, work, etc.). I find it difficult to make plans, take vacations, go back to school, and often just function in a normal day.
Fortunately, I live with a very supportive boyfriend but I would really like to find out how others have adapted to the "lifestyle" change that this disorder causes. Feedback would be greatly appreciated.

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Thanks Karry. I really appreciate your response. Couple of questions. Who is Vicki that you referred to in your email? Does she work for Medtronix? Would you recommend contacting her directly (or anyone in particular at Medtronix)? Did Lee Swanstrom perform the procedure? Also, I meant to ask... had you tried the botox injections? That was also recommended to me but I have not heard that much positive feedback as a result of the procedure.

I have a GI doctor that you I use in Boston but she does not do gastric pacemakers. Recently, I went to see a specialist at Temple University (had to appeal 2 times because he was considered "out of network") who specializes in gastroparesis. I really do not want to go back to him though. I have an HMO (Harvard Pilgrim Healthcare) and they are brutal with approvals. Again, the insurance company responded by saying that the procedure is considered "experimental" and they will not cover it.

I apologize for all of the questions but it is wonderful to speak to someone who has gone through this and I am seriously thinking of moving ahead with this process. The chonic nausea is just too much. It is affecting my career, personal life, health, etc.

Thanks again.

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Hi Lonna,

No problem with the questions, I'm happy to help. Vicki works for Medtronix and her job is to help get approval for the device. My doctor referred me to her after our denials, She is very knowledgeable about how to go about it. I can get you her number if you'd like. Dr. Lee Swanstrom did do my implant surgery, He is one of the approved doctor's to preform the implant. He is very good. I have had the botox injections, I really didn't get relief from that procedure.

I understand how you feel! The nausea takes such a toll on your whole being.. Take care, talk with you soon, Karry

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Hi Lonna,

I'm not sure if you have visited the website for the enterra therapy device? medtronix .com it's very imformative. It does talk about the insurance process.. However they are here to help you, and take care of the approval process. Have a good day, Karry

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Hi Karry. How are you doing with your Pacer? I notice that you haven't made any comments lately so I hope that means no news is good news. I had a Consultation this morning with Dr Melvin at Vanderbilt in Nashville. He said that I am definately a candidate for the Gastric Pacer and that he will give me a surgery date once my insurance has cleared it. He is such a wonderful man and I would highly recommend him to anyone who lives in TN or AL. I also met up with a member of this support group "Char" she had an appointment there today as Dr Melvin also did her Pacer surgery. We chatted for over an hour, she is a really sweet young lady and has really been through the mill. Well Karry I hope you are well and that the Pacer has started to help you. All the best to you. Mags.

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Lonna,

I have had my pacer for 4 years now and love it. I still have to deal with GP and the stuff that comes with it, but I wouldn't want to imagine having to go back to life without my pacer. Mine was done by Dr. Melvin, who I highly recomend. I had to appeal my insurance company. For the appeals process we gave the insurance company letters from ALL of my doctors, a list of all the meds. I had tried and failed, a detailed list of everything they were having to pay for to keep me going at the time-(the TPN, IV zofran and several other IV meds., and the cost of on average the 2 weeks a month I tended to spend in the hospital) we then told them the cost of the surgery and the comparison of what they could pay once for the surgery and what they were currently paying each month, I then had to go infront of the appeals board and give them a personal statement of how the GP was effecting my life and how much I needed the surgery, and what the outlook of my life was if I didn't have the surgery. I also had a case manager with my insurance company that was fighting for me. Thankfully, we found out 2 weeks later that they approved it. I hope you are able to move forward with the process. It really is a GREAT device.
Char

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Hi Mags,

It has been an up and down couple of weeks for me. I have had the pacer adjusted 2 more times, I'm not sure for the better, but my doctor tells me I have to give it time. Most days it still does help with the daily nausea after eating, but my BLOATING, and Gas have really increased, as with the pain that goes with that, so I trying to figure out what and how to address that, no over the counter remedies seem to work for me, so this is kind of where I am. I'm glad your appt. with your surgeon went well, I hope your insurance company responds quickly for you. Take care, Karry

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Karry,

Don’t get discouraged. It really does take time to see the benefits of the pacer. It can take 6 months to 1year. It can take so long partly because you have to find the settings that are right for you, and each person can respond differently to the settings. It also takes a little while to see a difference from an adjustment. I usually see an improvement 2-3 days after, but my doctor has said that some of his patients take 7-10 days. Sometimes when I’m really bad it can take a couple of adjustments just to get things back to a tolerable level. Just don’t give up. Hopefully, soon you’ll be doing better and eventually you’ll be able to tell when you need an adjustment. I wish they could find something to help you with you bloating. I know how uncomfortable that can be. Keep us updated. -Char

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Hi Char,


Thank you so much for the comments, it helps to hear from someone who has the device. Have you ever had an adjustment and you felt worse afterwards? I'm thankful that I have this and I know I have to be patient, You just get so tired of being sick.. Thanks again, take care Karry

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Karry,

I'm glad I can offer you my support. I just wish I could offer you more than that and my experiences. I know what it's like to be just starting out with a pacer and I wish there had been someone that had experienced what I was going though to talk to. In answer to your question, yes I have gotten worse after an adjustment. After about a week and things keep getting worse we decided it was the adjustment so we readjust. How long has it been since your last adjustment? Feel free to ask me anything and I'll try to share my experiences, because like I said, I wish there had been someone for me to ask questions. I hope things start to improve.
-Char

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Char,

My last adjustment was 3 weeks ago. I have felt since that last visit to the doctor that after eating whatever, I'm feeling more nauseated than I had been feeling prior to the adjustment. I wasn't sure how much time to give it before calling him again. Thanks for your help. Karry

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I have had Gastroparesis for over 2 years now. Domperidone has helped me but I know i will never be normal again. The best thing to do is when you have a good day to enjoy that day. For me it's hard because my friends and family are always like you look fine. I hate that.

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Darla,

I wanted to make a slight correction to one of your comments. There are quite a few people with gastroparesis for no known reason, idiopathic. Some people are lucky enough that they can find a reason, for others it's really a complete mystery. I have gastroparesis secondary to Ehlers-Danlos Syndrome, which is a genetic connective tissue disorder, so in some sense I consider myself lucky that at least I know why I have it! As right as you are that gastroparesis doesn't just happen, that doesn't mean that we have enough knowledge to know why it happened. I'm glad you're doing well on the Protonix and Reglan and good luck with everything.

Sarah

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I thought I'd introduce myself here as well. My name is Sarah, I'm 26 years old and have been diagnosed with gastroparesis DEFINITELY since last August, was diagnosed with "delayed gastric emptying" back in 2000 or so, but was given Reglan and sent home without any information or follow up etc, and we think that I've had it since I was 6 or 7. When I was re diagnosed in August I was put back on Reglan, but on a small dose due to bipolar and issues with anxiety along with a history of tardive diskensia from Haldol. I ended up with some pretty nasty side effects again and my doctor sent me to a motility specialist right away. I was lucky there was one right around the corner (I lived in lower Westchester County, NY...just north of NYC) and he put me on Domperidone, Zelnorm and Zofran immediately and scheduled me for a botox injection. Eventually everything was helping and I was doing pretty well and eating solid foods for about 8-10 weeks and then I started getting worse again. Figured the botox wore off, I was scheduled immediately for another endoscopy with double the dose this time, but it di'dn't work. this was around February of this year. At that point my doctor told me the only thing left to try was the pacer. Since I lived alone and my parents are in Washington, DC area where there are doctors specializing in gastroparesis, we decided that I should see those doctors for an evaluation and such, so if I got the surgery, someone would be around to help me care for myself. The appointments were made during my spring brea. Of course they had to run a gastric emptying test, which meant that I had to stop all my meds a week before the test. I should mention that I steadily grew worse and couldn't tolerate solid food and then even Ensure/Boost made me sick. So off the meds I went and sure enough I just got worse. Gastric emptying test showed at 4 hours I still retained 55% of the egg beaters sandwich, which not only means I qualified for the pacer, but that I have severe gastroparesis, which honestly shocked me that it was so bad, I always underestimated it I suppose. I was referred to the nutrition GI there who also specializes in gastroparesis and she recommended that I get a G/J feeding tube based on how much food and water I was getting on average a day and some blood work. I went up to NY for about a week and came back down to have it put it, but I was so sick at that point, I'd stopped tolerating the clear liquid supplements as well (Resource Breeze, Enlive!) and even for 24 hours didn't tolerate any water...NOT GOOD.

So I ended up in the hospital for 2 weeks while they rehydrated me and got the tube it. I won't go into that whole story because it was a mess...no one's fault at all, but a few things went wrong and we also had to go slowly to make sure my connective tissues could handle it. I started doing VERY well with the tube feeds once I recovered from the procedures and started getting nutrition into me and then right when they were trying to do an esophageal manometry test for the pacer, I started vomiting...couldn't put the little wire in, let alone have me drink that much water. Around that time, cooincidentally, I started vomiting every night for no reason...I could pick at some food and I'd throw up, I could not have anything at all, including hard candies and I'd throw up so I went ontp Phenergan injections at night. Was generally just getting by between the nausea/vomiting and the severe pain I was in. I also kept battling with small bowel bacterial overgrowth.

Then I had the pacer implanted on July 18 and was told it'd take about 2 weeks to recover from the surgery. It went well, all was smooth, but I was feeling worse. Figured it was just the surgery and maybe I was taking longer to recover...ended up in the hospital again a month after the surgery for dehydration and to try to control the nausea/vomiting and pain. Yes...dehydrated despite the feeding tube. Well according to my doctors the surgery flared up my gastroparesis even more, despite the general downward trend I was having anyway. We also believe that I have issues with small bowel motility as well, which doesn't help things!! My surgeon and my GI doctors have told me that it can happen, the worsening of gastroparesis after the pacer surgery, although it's not common, so don't worry if you're thinking about the pacer. The general thought is that in 6 months I should start getting better from the flare and hopefully the pacer will start working a bit and help some of the nausea, pain and distention.

Just recently, about a week ago, I had a PICC line placed so I could get IV fluids and IV Zofran at home because I just couldn't get enough water through my tube, I couldn't get the rate fast enough and of course there was the battling the insurance (United Hleathcare) to pay for Zofran in the first place. I was also having issues with my electrolytes. Thankfully I received Medicaid before the PICC was placed and one way or the other, my IV Zofran is paid for. I saw my doctor yesterday and we bumped up the dose of the IV Zofran even more (doubled it) because while it's better, it's not lasting until the next dose. I also got a referral to the pain clinic, so someone can play around with my pain meds to get that under control as well. I'm also still taking the Phenergan injections at night.

So that's how it is, we're hoping the pacer will help some, given the slow small bowel motility there isn't a WHOLE lot it can do. I'm hoping I'll be able to tolerate a little bit of solid food, but at the very least that my nausea gets under better control and that I stop getting worse.

Despite how severe my symptoms have been, there are people that have been much worse and ended up having multi-visceral transplants because their entire GI system had essentially stopped working, so I do consider myself lucky in many ways. Also that I have a FANTASTIC team of doctors, home care nurses, pharmacist and that medical science is advanced enough that these interventions like the feeding tube and such are available to me.

I'm hoping to be able to take a class or two in college again next semester, even if it means carrying around 5 pumps for whatever various reasons! As long as my symptoms are under control in some form and I'm getting nourished and hydrated, I'm not caring so much.

There you have it!
Sarah

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Hi,
I am one of the unfortunate people with this ugly illness, except I also have the diabetic form. I am also latose in tollerent, so eating becomes very hard on me. I know I must eat a lowfat and low fiber foods and everything must be cook to sinfullness. This illness has changed my life also. I get so scared sometimes, and I cry at the drop of a hat for nothing. My husband has been so great. This past week I have had bowel problems, (just call me lucy goosy) I did sleep through the night last night, so maybe it is over with for awhile.
I wish you luck,

Bobbied
PS. I write cook books, I'm going to try and write one for this misserable illness. Wish me luck

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I'm also trying to put together a cook book, mind you its a slow process as I arely have the energy to try something new and I was never a cook until I suddenly had to be due to this illness. Perhaps we can swap a few recipes. :)

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Hi Bobbied,

I also have the illness and diabetic. Not a fun combination. I have been diagnosed less than 2 months and it is not easy to go from working 10+ hours a day to being in the bed that long. The thing that I have learned is that no 2 people are alike. I love your attitude about the cookbook, all I can say is "You go girl".

I wish you well,

Charlotte

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Sarah,


Wow--you have been through the ringer! I just wanted to lend my support to keep up your spirits. It sounds like what you have been through is coming my way. I am in the approval process for the pacer (found the doctors to do it, now have to get insurance approval). I have had two botox injections--first one worked, second one didn't. They are talking about possibly doing a third injection with double the medicine. I was also told I should have a feeding tube put in but I am resistant to that right now. Was it an easy decision for you to have the tube put in? Do you feel at this point, it has helped you? I am currently on a liquid diet (only what I can tolerate) and IV meds through a picc line. It sounds like things are starting to improve for you. I have to admit, I am little scared of what my future holds. I hope you are a having a good day today.

Michelle

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Sarah and Michelle,

You guys are inspiring to a newly diagnosed person. You both have been thru it and I appreciate all of your experiences and your willingness to share. I am hoping not to have to go thru some of your trials.

Your courage is amazing and really helps me to see that I should not be complaining so much, I have been dealing with this for just short of 3 months.

God Bless both of you,

Charlotte

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Charlotte,

I wanted to reply to your comment before I did to Michelle's. I'm glad to help you in any way I can with advice from my experiences, knowledge and just as an ear to listen. I truly hope you don't have to go through as much either!

I don't think I have courage beyond any other person, but thank you for that compliment.

The main point I wanted to get to was DO NOT sell yourself short. I hope you never get as severe as I am, but having gastroparesis in any severity is a very difficult thing to cope with. Don't think for a second that you shouildn't be complaining because there are people worse than you. The idea "I have it pretty good because there are always people worse than me" helps me, however it doesn't diminish what I've been through either, not should it for you. COMPLAIN ALL YOU WANT/NEED TO! It's VERY impolrtant to get these things out of your system or they can eat you up and having a positive mental attitude I have to say is probably one of the biggest things that's helped me through my entire illness. Not to mention a sense of humour.

Feel free to message me anytime you want to vent and need someone to listen. We all have our bad days.

Sarah

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Sarah,

I see several similarities between your story and mine. I've had a pacer for just over 4 years now. I wasn't able to tolerate anything by mouth and then unable to tolerate my tube feeds, so a little while before I got my pacer I was on TPN and IV meds through central lines. My GP has effected my small bowel and bladder. Hang in there, it does take time for the pacer to help. I'm still on tube feeds and nausea meds.(zofran and phenergan to make it till next dose of Zofran), but at least now I'm able to tolerate the tube feeds. I am also able to eat some now, especially when I'm doing well. I'm also in the hospital less than before.

It's great to see your positive attitude, a positive attitude can make a difference. I try to keep a positive attitude, but will admit that I have my moments (sometimes days) where it sometimes overwhelms me and feels like to much. A sense of humor is so important. Something like GP can also change your sense of humor some too. In our house we find some things funny that most wouldn't, but when you deal with some of the crap that comes with GP after a while a lot of it can just be funny. I don't think many families can make jokes about throwing-up.

I hope you are able to go back to school soon. This is my 4th year of college, but because of not ever being able to take a full load of classes until this semester( had to withdrawal one semester because of heart surgery, and drop classes some because of hospitalizations) I won't graduate till spring 09 at the earliest. Just stick with it and take your time.

Hope your pacer really starts to help soon.
Char

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