Anyone here suffer from Gastroparesis?

[hamsterjill]

My daughter was recently diagnosed.

We know what it is and have googled all the links. I’m hoping there is someone on DU with some personal insights.

Thank you!!!!!!

[MuseRider]

1. For about 7 years it seemed like it was going to kill me.

I was one of the very lucky few who must have had a virus causing the vagus nerve to act this way and it all of a sudden reversed itself about 6 months ago. All I can really say is I am so very sorry for her, it is hard to deal with and at points she is going to be very angry with life.

Start with the FODMAP diet, as hard and awful as that is, and once that diet with the meds can keep it from flaring so much you can try other things.

I lived on Kraft Mac and Cheese with chicken in it. I had been a vegetarian but about the only thing you can eat is meat really. I stuck with chicken. Watch what makes her hurt and work from there. I still keep it around and eat it rather than eating 2 meals that would usually flare me up.

Bread and pasta are big problems. I eventually found that I could eat sourdough bread in small portions and even eat it with less discomfort if I toasted it first. I could also eat angel hair pasta but spaghetti was too much bulk. Go very slowly, it can seem fine one day and then just lay you out the next.

Make sure she brushes her teeth a lot. The hours of constant vomiting and pain can cause your teeth to weaken. I broke 2 teeth during this, brush a lot.

I was taking hyoscyamine for the stomach spasms and ondansetron for the nausea. The very second she starts to feel nauseated or the pain, it varies between people, take her meds. Right away. Some times it can stop the episode quickly. Sometimes not and she will just have to live through the pain. I kept a bag by the bathroom with a pillow and a blanket, a vomit bag (yes she may need them) for the times it would take hours for it to stop. This will be hard on you as well. You can buy the bags on Amazon.

Get a very good juicer, you can have some veggie juice and some fruit juice but only if you make it very thin and run it through strainers and cheese cloth so that there is NO fiber left it in. There are cook books, some of them good and a lot of it she will turn her nose up on I am sure.

Expect later, if not now, that she will be standing there talking to you and all of a sudden she will start to shift around and you can watch her abdomen go from normal to huge, like 9 months pregnant huge. Be ready for the rest of it after. Buy her clothes that can stretch, I bought pregnancy pants eventually because I could go from a size 7 to and size 14 in about 20 minutes. It takes a while for that to go down. Having to stay in a 7 when the bloating starts is terribly uncomfortable. I gave them all away later and hope to every deity ever known that I never need them again.

I would be happy to answer any questions as you go along. My answers are based mainly on my adventure with this bad vacation but they might help. I am really sorry about this. There are surgical answers but they really do not seem to work with many people. I would recommend the group on Facebook but it often is more upset and complaining but then there is also a lot of help. There is a GP site on the Internet where you can get cards that when presented to a restaurant they have to allow her to bring her own food or help them to understand why she needs special things to eat.

I am really sorry to read this. It is very difficult and like I said, I was one of the lucky ones. I just got home from a cardiac cath and am in heart failure for now and I would 1000 times rather go through this that GP ever again. I wish I could tell you different. I was a long, hard slog.

[hamsterjill]

2. Thank you so much.

Yes, we will definitely be coming to your with questions. She wound up in the ER last night. The gastro doctor that she is seeing is not doing much AND if you can believe this (and I’m sure you can!!) calls to his after hours number and service went completely unanswered. Today, she’s home waiting for a call from his nurse. We are of course looking at changing doctors. He’s part of a super big gastro group and by god SOMEONE should be on call overnight.

[MuseRider]

3. Be ready to go through docs.

It is not as uncommon as it used to be. I actually saw a conversation about it on a TV show a while back but it was mainly about teeth. I believe there is a very good clinic in Cleveland? If you use FB at all there is information from the people there about which clinics will be able to help with surgical assistance. They have pacemakers to cause the stomach to actually work. They are nowhere near certain though. Mine does better now but I have to make it all happen by using Miralax. Once food sits in her stomach for a while it will become a big, painful problem. As long as her food moves through she might be able to avoid much of the pain and vomiting. Once it stops it ferments and comes out like it went in even days later. Without the Miralax mine goes nowhere, nothing really works well anymore but see if that helps enough to keep her more comfortable. I hate using it but....I would do ANYTHING to avoid the pain of this.

One other thing, she may need to have and upper and lower GI. Upper mainly to make certain that all this mess has not caused her esophagus to narrow. If she has trouble swallowing she might need to do that. It does help a lot, I have done it twice and need to do it again.

Of course they should have someone on call. That just stinks. ER's are not a good place either. They think you are nuts. This really is a true problem and is in medical books. It seems with the Internet more people are being taken seriously and they now do know about it...some of them.

[yellowdogintexas]

4. Yes there is a very good clinic in Cleveland!

It is on par with Mayo, in terms of the number of doctors and excellence of care.

If Cleveland is do-able I would definitely investigate it.

[uriel1972]

5. I take metaclopramide...

It has the chance of causing tardive dyskinesia, an irreversible facial tic, but I've been lucky these past 3 years and dodged that one. I also have ondansatron,(Sounds like a transformer) if needed.

I stick to soups, potato, pasta, soft bread and other soft and semisolid foods. I lost roughly 40kilos before I stabilised.

Don't know what else t9 add as my health system is totally different from the US. Ping me with questions if you want amd I'll try to answer.

[Stargleamer]

6. 2 possibilities

I think I might have this. I have found that enough slippery elm tablets and GastricSoothe seem to keep me from having the pain like someone has just hit me in the stomach, which awakens me at night.

Good Luck!