too many problems, no answers

[micki_kp]

I have been sick almost a year it started out with upset stomach, diarrhea, vomiting, pain, I noticed I was not
digesting most of the food I was eating I have been seeing doctors for a year now with several diagnosis and all of
those being changed a second opinion and all I still have no comfort level with meds or treatment of any kind my
personal opinion “it is a sin to be this sick” the diagnosis I have received so far are ulcerative colitis, 2 ulcers one
of which is benign (they say that I do not have cancer what does that make the second ulcer then) crohn’s disease, the next week they called and changed it I had microscopic colitis, no crohns disease, still had 2 ulcers 1 of which is still benign, an internal hemorrhoid, called me the next week and told me I had the 2 ulcers, heiatel hernia and the internal hemorrhoid, now mind you I have had test after test i think they have probe all that is possible to discover all of this finally got tired of the games and sought out a second opinion to which that doc told me I was perfectly healthy(he is a quack) so I decided to give up and not worry anymore, I went about 2 months and decided I couldn’t stand it anymore so back to doc I went I told him “simply cure the lip curling nausea that last every waking minute and I will not worry about anything else" here I go again more test some of which I have already had to no avail here I sit waiting for answer and suggestions does anyone know something I do not know that can help me. open to all suggestions at this point i will try anything. thank you very much in advance ~Micki

[4gpact]

Two things; ask for an effective, non-sedating nausea med, like Zofran. Expensive, but your doctor can make sure your insurance approves it.
Also, ask for a gastric emptying test. It will measure the length of time it takes to digest food. It is an easy and non invasive test, and might give some answers.
Good luck.

[ChickenBriar]

micki_kp,
I am so sorry to hear that you have having such problems.  I can relate 2nd hand.  My wife is also suffering with very similar problems.  She has been diagnosed with Gastroparesis (stomach paralysis) for almost two years.  I agree with 4gpact, ask a GI doctor to do a gastric emptying test.  It took the GI doctor almost a year to diagnose her.  At one point, my wife's showed 0% emptying after 2 hours (most stomachs empty almost competely in ~90 minutes).  She has an extreme case of it.
I'm no doctor, but have done extensive research on gastric pacemakers (made by MedTronics) -- my wife now has one, gastroparesis, and I am now investigating the use of Lupron to treat Idiopathic Gastroparesis (means doctors don't know what causes it) in young women.  My wife has fought it for many years, but her pain has become unbearable - even with high pain meds and she goes to the hospital about once/month to be rehydrated because she can keep nothing down for at least a week or two/month.  She just started Lupron treatments and it seems to be helping her a lot!  I understand how you feel when doctors (and friends, family, etc) tell you that there is nothing wrong with you.  Many don't understand this illness.

[4gpact]

Wow! I almost never hear of anyone with that diagnosis; that's what I have, but I am not as severe as your wife. I get chronic and recurring nausea, and take domperidone (which I get from out of the country since it's not available her; great drug) and watch my diet very carefully. It can be a terribly debilitating disease, as you well know. I belong to an online support group through Yahoo, it has been a great source of information and support. In fact, as we speak, someone I met from the group is on her way here to have the gastric pacemaker surgery. Has your wife's experience been successful? I think it is an often misdiagnosed illness, and not very well understood. I am sorry you have had such a tough time with it, but am so glad to see that awareness seems to be increasing. G-PACT is actually a non profit organization for people and families dealing with gastroparesis. You can look them up on the web. Or, maybe you already know about it. I am always interested to hear of others experience with this illness.

[ChickenBriar]

I thought I had seen gpact before.  I am also on Yahoo's Gastroparesis website (though I haven't been there lately).  I recall a message about G-PACT (and you?) being in the The Patriot News a couple weeks ago.  I haven't posted there for a very long time because for some reason my posts won't take.  Must be some permissions problem or something.  Very frustrating!!!  Not sure who to contact!
I just found this site yesterday, so I decided to start making others aware of gastroparesis so maybe they won't have to go through everything my wife went through on this.  The pacer has worked marginally well, but the Lupron seems to work pretty well for her.  Thanks for asking.

[4gpact]

What a small world! I think you might be referring to an article about Carissa Haston, who lives in PA, and founded not only the support group just a couple years ago, and now has almost 800 members, but also was responsible for founding the non-profit organization. And all this while dealing with GP, and being young at that. An amazing feat. If it weren't for that group, I would never have found the medications or the doctors that have made such a difference, so I am a big fan!
I think if you go to the site, you can probably send a email to find out how to get back on, or whatever the problem is. I, too, am trying to be aware, and help educate those that might have this disease and not know it. I have not heard of the medication your wife takes, but will have to look it up!
My fellow online group member arrived here last night, and is having a second botox injection in her stomach tomorrow, and hopefully the pacemaker next week. Where did you wife have hers done? My friend is going to U of M Hospital, she travelled from Kansas for this surgery.

[micki_kp]

thank you all for your comments and suggestions. unfortunately i am working on trying to convince the head of the nuclear medicine department to put the dye for the gastro empty study into something else besides powdered eggs. oh lucky me, powdered eggs make me deathly ill. but do not worry i am not giving up that easily. i have myself convinced that the dye could be put into something like oatmeal or such. thank you all again for the insight it is greatly appreciated

[Kdown11]

About a year and a half ago I was diagnosed with a Hiatal Hernia, GERD, and Gastroparesis. On top of that I have a pre-existing condition that I cant seem to find anything on called Disfunctional Uterine Bleeding. If I even told you the history of my doctors then it would take the whole page. I have been researching forever and also just found Clarissa's sight which was a godsend to me as it has given me the most information. I want more information though! I have seen many websites about each of these disorders...if I followed every thing that I am supposed to for each, I would not eat. I used to vomit every day, now I have bouts of it depending on what I eat, how often I eat, etc. I have unexplained numbness and tingling, I get the shakes, Im extremely cold all of the time, Im tired or I have insomnia...all unexplained. A few months ago I woke up with severe cramping right below my ribcage. After 2 days of excruciating pain I went to the hospital, they gave me a concoction of 5 medications (still dont know what they were) but the outcome, it numbed everything and the cramps stopped. Did they know why? No. Did they investigate as to why? No. Do they know if it will ever happen again. No. About a month ago I thought I had walking phenmonia, I was shy of stopping breathing, I was given Albuterol, steroids, and the z pack....2nd time this has happened, only this was worse than the 1st time.....reason unknown. 2 weeks after that I thought I had the flu...cold chills, sweats, fever....must have been bacterial not the flu, doctor gave me meds, cleared up immediately, meds made me sick, stopped them. Now Im fine. I have read that hormones could be the cause of Gastroparesis (still being investigated), but they wont do anything more for the Disfunctional Bleeding other than control it by Depoprevara. I have a 5 generation history, but I am not allowed surgery. So basically I dont feel like anyone knows how or what they should treat first, nobody will look back inside to see if anything new is going on. Now Im having the loosing the voice issues. I feel like a big untreatable mess! Im sick of buying drugs, Im sick of being sick! And my future looks bland, does anyone know where to find a good doctor? Should I head for the Mayo clinic? Im in KCMO.