Stupid stomach

Dee Dee and Hallie · June 08, 2009, 01:38:13 PM

Has ANYONE here had, have or know of anyone with functional dyspepsia or gastroparesis? I am at the giving up point, after a year of tests that is what it is pointing to and not much can be done for either thing. I really can't take it anymore and it is even worse now knowing there is no help out there, up until now there was always something else to try that kept me going. I can honestly say I wouldn't be here if not for Hallie, it is miserable to try and eat and I am super sick constantly whether I eat or not it's just even more painful and miserable after I do try to eat, I force myself to drink enough ensure, juice, etc so I can take care of Hallie but it would be so easy to just give up and let nature take it's course...I have read that dyspepsia is a fairly common thing maybe I just have a worse case but I have never heard anyone say they have it, so am wondering if any of you have even heard of it or know someone, I don't know how anyone could live with this all their lives. 11 months with the "flu" is enough! :verdict:

cheryl186 · June 08, 2009, 01:49:19 PM

Oh my gosh Dee Dee....I am praying for you all the time

I am sorry I can't help you with your questions because I don't know anyone who has either.....Just hang in there sweetie....remember we all love you and support you.....Hoping and praying you will find an answer to all your questions and will begin to feel better soon

klsb · June 08, 2009, 02:03:22 PM

I dont know anything about it, but could a probiotic help you at all?

I know its not the same thing by far, but i had IBS for over six years and probiotic cured it completely and i dont even take it every day anymore. I litterally couldn't eat anything, milk products, anything with oil in it, fresh fruit NOTHING. I lived off Mr.Noodles and tomato soup for a looong time.

So could it maybe benifit you in some way?

Kari · June 08, 2009, 02:13:43 PM

I'm so sorry Dee Dee! I don't really have any insight but just wanted to tell you we are thinking of you!

JetEd73 · June 08, 2009, 02:45:32 PM

I'm so sorry to hear that your health is down hill.

Prayers and rays heading your way.

papbouv · June 08, 2009, 10:16:29 PM

Sorry to hear about your tummy is their a support group on line?Sometimes if you can talk or type some one that has the same problem. You know you are not alone then they usually toss ideas around on what worked for them & what did not.Usually their is a support group somewhere.Mega Rays to you hope you can find help somewhere have you try any Holistic doctors???Papbouv

Merion · June 08, 2009, 10:39:36 PM

Sending HHHHH's & PPPPP's for you and Hallie.

My sister in law had a similar problem but they found out it was a fructose intolerance and everything under the sun has it in it. Just look how many things have high fructose corn syrup in them.
Hope you find something that sits well on your stomach really soon.

Merion & the ZZ's

Dee Dee and Hallie · June 08, 2009, 10:46:07 PM

I haven't found anyone who knows anyone with this even though I read it's somewhat common.

klsb that is great you recovered from IBS, how long have you been well? I have taken probiotics for over a year as well as digestive enzymes, vinegar and honey, etc. Nothing helps but I will keep taking it. This week I can't get anything down I am so sick of this and worried about my Hallie. I just hope it will soon have an upswing again to where it is tolerable and I can eat more.

papbouv I did a lot of research online and I did find a couple forums but they are sooo depressing I can't stand to go in there. Of course it is usually a group of the worst cases that go there as the not so bad cases don't waste their time on those forums but it is still really scary to read and no one seems to have any anwers, the Drs don't even understand this thing there hasnt' been that much research and the few drugs they do use for it are not usually that effective and have horrible side effects (I ended up in the ER with the last one, Reglan, and it didn't help my stomach anyway). None of the drugs I've tried have helped at all. I have tried acupuncture, healing touch, hypnotherapy, and naturopath again with no help I'm worse now than ever. They know the anxiety I had over Hallie last year when she was ill is what triggered this but it probably didn't cause it...it was no doubt underlying but if I had not had a big stress like that in my life it may not have ever surfaced. I remember while sitting in the waiting room at the neurologists waiting for her all day everything started, I couldnt' breath (that lasted 6 months), and I remember taking a sip of milk shake someone brought me and could barely get it down.

I just never heard of this stupid thing and had no idea your stomach can just turn off like that for good really sucks. Merion I'm glad your sister in law was able to get diagnosed and get some relief, I have been through a billion tests and one of them was celiac disease I had really hoped I had that because even though the diet restrictions were bad if you stick with them you feel fine. With this nothing I do makes it better. I also was hoping I had a bad gall bladder but no such luck! Funny the things you hope for at times like this.

doxielady5569128 · June 09, 2009, 07:13:39 AM

Dee Dee,
I'm so sorry to hear you are still not getting any help. I wish I had some good ideas, but I can at the very least keep you in my prayers.

Please keep us posted.

Amorette

klsb · June 09, 2009, 09:18:42 AM

Thats too bad, i figure its so good it would help some.
When i went to Esthetics school it had just started and i would get such bad pain in my stomach i would have to lay on a bed on my side curled into a ball. It was like Eat and Pain, or Starve and No Pain. I know how bad stomach pains suck, so im so sorry i cant help you more. Just hang in there! Its good that your able to slowly eat more though! Any improvement is a step in the right direction!

Dee Dee and Hallie · June 09, 2009, 10:43:54 AM

Thanks Amorette and klsb. Actually it is getting much worse so going in the wrong direction, it was really bad for about 4 months then up and down for a couple of months than for the last couple months the majority of the time it was tolerable I could at least function but now almost 3 weeks of as bad as it's been again. What I don't understand is how I can feel so bad constantly, like you said you were worse after you ate and ok if you didn't which would make more sense, but I am in misery from the minute I wake up I haven't eaten in over a day now and I feel like my stomach is absolutely stuffed. Plus nauseous, etc it's a very hard thing to describe because before I got this I never felt anything like it before.

scootersmom · June 09, 2009, 12:03:42 PM

Oh no - DD, I am so sorry to hear this is getting worse again. As you know, I'm familiar with the weirdness of not eating and still feeling full - and nauseated to boot. It makes no SENSE, and is miserable and frustrating, and they never found out what was wrong with me. All I know is one of my particularly months-long spells ended when I quit my dreadful job I hated. Other than that, I've never been able to connect any dots between the onset/end of symptoms and any outside influence. I wish I had something helpful to offer besides an "I understand" - though it sounds like unfortunately you've been suffering far longer and worse than I ever did.

I think I remember you saying you tried some alternative treatments as well, haven't you?

Scooter sends his love and get-well thoughts to you. He says he'd even share his special soft canned yummy food if you thought it would help. Silly little noodle. He means well, though, and just wants his Auntie DD to be okay...

Barb · June 09, 2009, 06:08:47 PM

DD - I just hate that you are dealing with all this...and I just can't believe that you can't find some relief somehow.... Sending mega rays and prayers that something will help !

papbouv · June 09, 2009, 08:41:40 PM

Was looking it up on Google and they said sometimes diabetics get this too.More Ray's & Hugs to you hope it will settle down again soon.Papbouv

Dee Dee and Hallie · June 10, 2009, 01:20:31 AM

Noel I wish they had figured you out it would have been interesting to know if it was the same thing. It sounds like it. If it's dyspepsia they say it is usually chronic but some people get over it they don't know why looks like you were one of the lucky ones! Warning I may be emailing you to grill you on details again I know I did once....and tell Scooter thank you so much for offering to share your yummies, but I think he needs them to keep his strength up to heal up his teef. :thumb:

I can't believe there isnt' anything that can help either Barb. They just don't know enough about this dumb thing to know what to do for it.

Papbouv, I read that too something like up to 50% of diabetics get gastroparesis. How horrible. For them it's long term nerve damage so it's not reversable. It can be reversible if it was caused by something like a virus (I think I've had mine too long though to hope that but I'm not sure). It can also be caused by illnesses like parkinsons, schlera derma, etc or damage to the vagus nerve during a surgery. But about 40% of people with it it's idiopathic they don't know why they got it.

If it's functional dyspepsia, which I think mine is but again not sure, gastroparesis can play a role in that, it probably doesn't matter as either make you miserable and not much they can offer. Some people go years and years with this, I don't know how they can do it I'd never be able to take this for years. Oh and Noel, yes I did lots of alternative stuff, apparently none of it worked since I'm now the worst I've been in 3 months again. I've quit everything and will save my $$ now. Hallie needs more toys after all.

Teresa · June 10, 2009, 06:50:47 AM

Okay, I know this is extreme, but, have you (or the doctors) considered having a feeding port put in that goes directly into the stomach (through the abdomen), at least for a while to give the stomach a rest. This would give you some great nutrition and maybe give your stomach a bit of a rest. I know, you would have to go to the hospital for a few hours (but not stay overnight), but it might be a thought. Would sure be better than Ensure and you wouldn't feel so sick all the time.
Like I said it's extreme, but much better than what you are dealing with now, and you would hopefully feel better.

papbouv · June 10, 2009, 07:34:20 AM

Are there any doctors doing research on this medical problem ? If so if you could contact some of them for some help know you might not want to be a test subject but some where some one is working on this problem.Example: Someone I use to work with turned out her child had Vanishing Bone disease only about 5 in the whole world had it. They found doctors that were working on this disease plus found others with this disease sadly he passed on at the age of 21 yrs.Just knowing doctors were working on the problem and others out there had the same problem gave them some hope.Doctors are always finding new treatments,new drugs so hang in there keep fighting Miss Halie needs you.More rays and hugs to you.

Dee Dee and Hallie · June 10, 2009, 11:12:31 AM

That would be an option Teresa, I would hate to do it but would if it came to that. My biggest fear is leaving Hallie whether to go to a hospital or permanently so I do force myself to drink ensures and juice (and some solid food at times) to the point of agony and so far my weight has been stable. I have been to the ER for fluids but not a feeding tube yet and hope that never has to happen but it's an option.

There has been some testing out there Papbouv that I've read about, there isn't too much on it because they can't get funding, all the funding goes to bigger more common things like cancer (and rightfully so). It's just too bad there isn't enough funding to go around. All I ask is to be here to take care of Hallie that is all I am desperate for that one day when she's gone it won't matter nature can take it's course whichever dang direction it chooses to go.

My gastroenterologist just called he said my step mother called him yesterday because she was concerned

I had told her there was nothing more he could offer other than the test at Virginia Mason in Seattle I have decided not to take because whether it shows gastroparesis or not, the only thing they have left to try is a drug called domperidone which you can only get from Canada it is not approved here due to cardiac problems. My brother died suddenly of an arrhythmia and my heart has had iffy results (I had a bunch of tests after Hallie's scare and they think it's OK but some question) so I am not willing to take a drug that may or may not make me feel a little better, but then drop dead like my brother did and leave Hallie. Plus with all the radiation and testing on everything this last year I am not anxious to get radiated again for 4 hours for this test when it doesn't matter since I won't take the available drug. But he said the radiation isn't that high with this test (although it still worries me combined with all the rest) I asked him why take it is there anything else to try if I don't take the domperidone and he said maybe not but at least we'll know for sure the diagnosis (It supposedly will tell us if it is gastroparesis or not).

So I still don't see the point but they are setting it up now and I'm in tears at the thought of leaving Hallie for 9 hours for a test I don't really need. I think sometimes the Dr's just test or drug you to make you feel like they are doing something when there is nothing they can do. (I do like my gastro guy though he's tried everything).

sollysmom · June 10, 2009, 11:29:51 AM

Oh, Dee Dee, I am so sorry that you are still having problems with this. I don't have any personal experience with it, but one of my best friends is a diabetic with it, and they put her on a muscle relaxer. So far it has helped her. I don't know if you have tried it, but thought I would mention it to you. I sure hope you get better soon.

Darcel

doxielady5569128 · June 10, 2009, 11:39:54 AM

Dee Dee,

I really wish there was something I could do to help you! I can't even imagine how awful this whole ordeal is for you. If I lived close, I would definately be offering to watch Hallie so you could go to your appointments (somewhat) worry free. I'm the same way with Porky though, if I don't have to leave him I won't. I'll keep praying that you get some help and answers with this really soon!!!

Would you mind if I had you put on our church prayer chain? I wouldn't have to give a name or anything.

Amorette

Teresa · June 10, 2009, 07:53:34 PM

At least if you find out it isn't the gastroparesis, you know there is hope of it getting better. Yes, sometimes it does seem that doctors do test just to be doing them, but from all that you have said about your gastro doc, I think you can trust him to do only what is necessary. I'm sure this is driving him nuts, too. A good doctor cannot stand to not be able to find an answer for his/her patient. Hallie will be okay, I'm sure, and she will think it was worth waiting for you if there is achance you might get better.

Dee Dee and Hallie · June 11, 2009, 12:35:53 AM

I sure feel for your friend Darcel I can't imagine having something like this and diabetes. I'm glad to hear the muscle relaxer helped her, I have not had that suggested yet but I did look it up after reading your post and saw it was on the list of things to try. My gut Dr here is sending me up to a motility specialist in Seattle I've seen him once already he of course did more tests and is the one who will do this gastric emptying study. He seemed to know a lot about all this, I am glad to have a good speicalist anyway. My friend with the pit bulls, offered to go up with me and you can never be gloomy around her she's a hoot so that will help.

I wish you were close enough to come sit with Hallie too Amorette. I called my step mother this afternoon and she offered to come take care of Hallie which was really nice of her, I told her she has to come attend classes on Hallie Care 101 first and she said I'll do it!

I think she is feeling a little guilty about calling the Dr on me. I hate to have her come all this way (about an hour each way) but I know I can trust her so that's great. Of course you can put me on the prayer chain I'd appreciate it! Thanks!!

Thanks Teresa I'll just go and get through it, I lost hope a while ago it will ever get better but I'll humor them and you never know. It probably will be a good thing to know what it is for sure. I guess gastroparesis can (rarely) get better and even go away if it was brought on by a virus, athough some caused by a virus also don't go away, it also sounds like there isn't much chance of dyspepsia going away either but in some it does. They obviously have a lot to learn yet about both things there are a lot of theories but no one knows for sure what causes it, what is going on in there to cause the symptoms, how to treat it, etc. It just seems so odd your stomach can stop working like this for no apparent reason. You are right Hallie will be fine I am just so used to being with her 24/7 I always feel like I forgot to put on pants or something when I go somewhere without her!

Leslie · June 11, 2009, 06:15:15 AM

Oh, Dee Dee I am so sorry to hear this. NO answer, no solution, and you have no pounds to spare. I do understand that the celiac test can give back false readings both ways...is the Ensure you're drinking gluten free? Maybe--and I am not expert--maybe since you are eating and drinking next to nothing, can you find a gluten free drink and see if that helps at ALL?

Well, poop. Sure wish I was closer to help you out. Take care, I am praying for you. :heart: :pray:

scootersmom · June 11, 2009, 09:48:15 AM

Auntie DD,

I can come there and take care of Hallie. I will be good company and also guard the house with my toothless barking! I love your yard. Also you know how I have a crush on Hallie (but don't tell her because I plan to Play It Cool).

I am so sorry you have to be away from her for the day. It is very difficult for any human to be away from us, this I understand. I do not know how my mom stands it five days a week. She must be very brave! (But don't tell her because I am trying to Play It Cool).

Also, mom and I remember your friend Diane with the Pit Bulls! She is very cool and we are glad she'll be your partner for the road trip to Seattle. Hopefully this will be the trip where some good news is discovered - you certainly deserve it after all you've gone through and also because you are awesome. I am sending you magical bonus Scooter good luck rays and also virtual puppykisses straight from my damaged snoot.

xoxo,
Skootr

Teresa · June 11, 2009, 04:11:09 PM

Scooter, you could make anyone feel better. I think you should get the award for the most compassionate dachsie on our board! I bet Dee Dee will tell you that she had tears when she read your message, just because it was so sweet. Your mamma is very, very blessed.

Brekkesmom · June 11, 2009, 08:35:12 PM

Okay, we are definitely stepping up the rays and prayers and hugs, starting asap! We did not know you were suffering so, dear DD, and are putting you up in the number one spot, priority-wise!

Ruth in MT · June 13, 2009, 11:51:13 PM

DeeDee,
Sorry I haven't been keeping up on the board. I didn't realize you were not well. If you want some weight I'll be glad to send some!!!!

.... the least I could do.
I'll share some of those healing rays that I received from the group.

papbouv · June 14, 2009, 09:33:19 PM

More Rays & Hugs from Buddy,Patches & Papbouv

Dee Dee and Hallie · June 15, 2009, 12:05:30 PM

Thanks you guys I really am about at the end of my rope with this. Thank goodness for my little Hallie I say that to her about a million times a day.

Scooter I think you should come stay with us for a few months Hallie and I would love Scooter rays up close! You are a very sweet boy and deserve to not lose any more teef ok! We don't have any high hopes for this test the only thing it detects is how fast food goes thru your stomach so all it will tell us if things are moving too slow...it won't make any difference what the test says because they can't do anything either way so I really don't see the point but the Doc probably needs a new boat so I guess I'll donate to the cause!

Thanks Les I not only had the blood test for celiac but also last month they went in and took a biopsy which would tell for sure and it ruled out celiac. I'm sure they are right that the nerves or the stomach muscles stopped working right when I stressed over Hallie's scare, problem is they can't help me and it's probably permanent.

Thanks Julia, Ruth and Papbouv I'll gladly take any extra weight but I hope that comes with a non-agonized stomach too! :thumb:

cheryl186 · June 15, 2009, 12:52:02 PM

Dee Dee, many many prayers still heading your way.....you are right....bad things shouldn't happen to the nicest people and you are one of them!!

doxielady5569128 · June 16, 2009, 10:03:13 AM

Dee Dee,

I have no clue why I thought of this, but is it possible you may have a blockage somewhere in your digestive tract? That would cause a lot of problems like what you are having and could be hard to detect. Let us know what you find out at your latest test. I hate that they can't give you any answers!! I'm glad you found someone to come watch Hallie for you!! I'm the say way, I gave my sister a four page Porky care 101 pamphlet when I had to leave him.

My husband got the 12 pager. And, no... that's not a joke. I really did. I think its great that you care so much for your baby that you are protective of her.

You need to remember that she needs you to take care of yourself too.

I hope this test at least shows something to give clues to your doctor about what is going on. I'll keep praying for you and we've got you on the prayer list.

Amorette

Dee Dee and Hallie · June 16, 2009, 12:35:52 PM

That's a good thought thanks for wracking your brain for me! Unfortunately though several of the other tests they have already done would have shown any kind of blockage. The only good thing is they are trying to schedule the test at the hospital a mile from me instead of in Seattle which means I would be able to leave during the 4 hour test and come home and check on Hallie so wouldn't be away from her that long or need to find someone to come take care of her. So no need for the Porky 101 equivalent manual!

doxielady5569128 · June 16, 2009, 01:49:28 PM

I'm glad they were able to do your tests closer to your home!! :apls: My sister asked that I please spare her the manual next time.

Well, my idea was worth a shot anyway. It was the only thing I could think of. I'm going to keep researching and see what I come up with, if anything. Give Hallie a kiss for me.

Dee Dee and Hallie · June 16, 2009, 02:37:46 PM

I appreciate you putting on your thinking cap, this test should tell us one way or the other I think. Virginia Mason hospital in Seattle just now called me and they said the machine at my hospital is too old so they want to do it up there, I'm waiting for a call back on day and time I am halfway to telling them to stow it I do not want to leave Hallie like that and I really don't see the point in taking this stupid test anyway. I'm so frustrated with the whole thing and the test won't help my symptoms, it will just tell the Dr's what I am more likely to have which I couldn't care less myself since there is no treatment for either thing.

Roberta · June 16, 2009, 11:32:00 PM

All I will say is GO get it done and the more people you see at one point in time someone will get to the bottom of it.
Roberta

scootersmom · June 22, 2009, 11:26:27 AM

DD -

Any news about the test yet?

Also, Scooter would like to know how soon he can come stay with you. He remembers how much he loved your backyard. And Hallie. Oh, and you too.

And the backyard. Did he mention the backyard?

Shumard4 · June 25, 2009, 12:35:41 PM

Have you sought out a holistic doctor?? If not I would, I would try acupuncture also. Don't give up Hallie needs you

Dee Dee and Hallie · July 15, 2009, 11:51:52 PM

Scooter we will have dinner waiting for you! Soft food only, we know about the teefies. Hallie will be very happy to share her back yard with you!! It always looks better with a handsome boy in it!

Thanks Sue yes I've been the holistic Dr route too, did a ton of tests, supplements, etc. Nothing helped. I also did acupuncture, hypnotherpy, etc. I've quit them all now. As they say I look really good on paper! :scratch: