Any suggestions,thoughts, or ideas...Please, HELP

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pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/1/2010 2:32 AM (GMT -7)   
I am a forty year-old male, and for 2 years I have been in Medical Purgatory.  It all started in early May 2008, with a cheeseburger, 6 hours later I had moderate RUQ abdomine pain and I was nauseated.  When I got home  I vomited (sorry if this is gross) this muscusy gelatinous bownish mass of something and 10 min. later I drank broth.  I instantaniously had a severe seering pain in the same location an 8 on the pain scale.  I remember before I had symtoms  I vomited a yellow-orange extrordinarly bitter, chalky substance that felt like it stripped the enamel from my teeth and received miner burns on my lips.  I can replicate my symptoms with hamburgers , coffee, and other high fatty foods, but now almost anything can set off an attack.  Laying on my right side and sleep is impossible during an attack, unless I am sedated, and one time my pain and vomiting was so bad I took Phennigan, Ambien, and 2 5/325 tabs of Percocet and still could not sleep.  The pain is a sharp stabbing pain like 3-4 chef's knives stabbing me.  Sometimes I feel like I have this ball inside and some hand is just squeezing it to death this pain is pulsating and just takes my breath away like someone hitting you solarplexes.  I have these pains nightly anywhere from a 7-10 on the pain scale.  When this happens the pain not only radiates to my R. shoulder sometimes both, and R.arm to elbow, but the R. sight of my chest.  The pain is worse when I raise my R. arm above my head, walk, swim, take a deep breath, laugh, and twist.   When the pain is at it worst there is no position I can get in that decreases the pain heating blankets and hot showers provide only temporary relief.  I wake up in the morning going right to the toilet either having diarrhea, having to vomit, or both at the same time.  In two years I have vomited what I believe is bile 6 times (not including that 1st time I described earlier).  I eat something I am vomiting 30 min-3 hours later.  I have soft to watery stools everyday for the most part I believe I have Chronic Diarrhea.  When this started I was averaging 20-30 BM's a week and I thought that was a lot.  I am now averaging 80-100+, and when I am vomiting a lot that # changes to 50-70 BM's.  The only medications that help my vomiting is IV Zofran and Phennergan any other form is ineffective for me.  I have had chills, night sweats, I had a condition were my lips, fingers, toes, and knees were blueish/purple and shivering uncontrollablely.  It was like I was hypothermic or something but my temp. at it's lowest was 96.5.   
 
My situation is complicated by the finding of Ulcers about a year ago and I sure that's healed by now, and the fairly recent Diagnosis of Gastroparesis.  Gastroparesis literally means paralyzed stomach.  Nerves connecting to the stomach send messages from the brain telling the stomach muscles to contract when eating.   The nerve responsible for this is called the Vagus Nerve.  So when people have this syndrome their nerve is either impaired or permenantly damaged.  This leads to slow Gastric-Emptying food just sits in the stomach too long, and causes vomiting.  Diabetes is the main cause of having this diagnosis, also use of narcotics, anti-depressants, benedryl, eating disorders, viral infections, their are other causes too but can't remember the others, also theirs those for which a cause is not known.  I have had Narcotics, Anti-Depressants, and 2 1/2 years ago Shingles,  but my GI Doc seems to want to blame the narcotics use and these were prescription narcotics.  For more info go to any reputable medical website, or ask your Doctor. 
 
I don't know what to do anymore, I am suffering, my kids 5 and 4 deserve better than I can give them right now.  There's days were I sleep for 13 hours and I feel like I can sleep for another 8.  How can I be a good parent like this?  I was labeled with IBS early on and I am still under it's web now.  I have numerous tests all came back normal, my first HIDA Scan was 44% and my second was 99%.  I don't know how because that test sent me to the E.R. right after I could not stop vomiting and the pain was through the roof.  My Doc' s won't order any more tests, the surgeons won't touch me unless something that specifically points s to a Gallbladder problem, and I had one Doc actually believe me but he's been all but ignored.  Sorry for the length, but guess I'm just supposed to suffer with this, until something critical happens.
 

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/1/2010 11:53 AM (GMT -7)   
pappardelle
  Hello, well if your doc will not do further testing then you need a new doc.  Find a doc that will do a Sitz Marker Test on you to see if you transit time is working good....  You need answers and I had to find them on my own, with the help of this site.  I found my own surgeon and had him do the tests and guess what...my colon did not work,  so I thought I had IBS, but not all my symptoms were from my colon.  I had a total colectomy this feb and they hooked me right back up...Now I feel great and I can eat and live life...
 
You need answers so dont quit till you get them...You and your family should not have to suffer if there is a answer to your problem.
 
By the way Reglan will move the food out of your stomach faster...and thank God for Zofran, hugh?
 
Prayers are with you
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/1/2010 4:15 PM (GMT -7)   
It's not that he won't order any tests, it's that I have had countless labs, 4-5 Ultra-sounds, 2 CT's, 4 MRI's, an MRCP (MRI Gallbladder scan), PET Scan, 2 HIDA Scans, 2 Gastric-Emptying scans. All testing tell us is that I am an otherwise healthy person and should not be feeling this way, but I do, and as my Doctor puts it we don't know why. Because I have had such an extensive workup my HMO is restricting me from seeing any knew Specialists and doing anymore tests. I guess my dilema is do I buy more health insurance that I know I can't afford, go outside my HMO's system, and eventually file for Bankruptcy and loose my home; or just suffer until something shows up or something critical happens. I am have nightmares that I am at work and I collapse on the floor and when I come to in my dream I find out that my Gallbladder ruptured and that I'm very sick and the I wake up. I have eaten in restaurants in air conditioning and I eat. 10 min. after eating I am diaphoretic, sweat is sometimes just dripping from me, and within another 10 min. my shirt is soaked through, and it doesn't stop until I'm done eatingand I am in an air conditioned car with it on full blast, or I vomit. My PC Doc. is really caring and a good Doc., but feel I have exhausted the resources that's available to me.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/2/2010 11:20 AM (GMT -7)   
You are sweating and vomiting, and so ill like that..........hummmm confusing.  How old are you?  I guess I need more information,  I like to do research to try to help people so that is just terrible the way you feel.  Something is going on because your symptoms are not normal...
I still think if you could do the Sitz Marker test that would tell you so much....its just a pill you swallow then 5 days later they do a x-ray....it releases 28 little rings and where they land tells your doc alot...
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/2/2010 3:58 PM (GMT -7)   
I really thank you for your advice, and I'll ask if they will do the Sitz Marker test. I'm not trying be arguementative, I'm just trying to tell you my situation, symptomatically and what I am facing with my HMO. I have looked up the Sitz Marker Test as well, do they do this test for other reasons other than Chronic Constipation, because constipation has never been my issue? I have Chronic Diarrhea, which usually consists of rapid motility through the small instestine and large intestine and according to the sites I have seen never really tested, except through labs which I have done many times, but I will ask about this test anyway all they can say is no.

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/2/2010 5:03 PM (GMT -7)   
 I know what you mean about the HMO cuz that is what I have too.  I did not have the constipation issue either,  but it is just a thought to see if everything is moving the way it should.  But your always going....you are a puzzle aren't you?
 
Just know that you have to be your own advocate for your health.  Lots of doc's really do not listen to their patients as mine did.  So I sought out a doc that did and I am so thankful.  So be strong and find your answers...
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/2/2010 6:00 PM (GMT -7)   
Is it worth a shot to go outside my HMO, to buy extra health insurance? To do this I am going into this with the realization that this will put me into bankruptcy and I will probably loose my home this is the dilemma I am faced with, I'm all for getting answers, but I feel I am suck in a system that can't or won't help me. I have thought about going to the UK if it would help I would be on a plane in 2 weeks, three at the most. I have thought about going to the Mayo Clinic, or the UCLA Med Center, but to this I would have to pay out of pocket or buy insurance. I have already payed out of pocket to a GI Doc., he pretty much threw his up at my situation also. He pretty much came to the same conclusion as my HMO. So my choices are, ruin my and my families finances, or try and be patient and hope something pops up and hopefully to able to recover from it. None are particularlly good choices are they.

Post Edited (pappardelle) : 5/3/2010 12:26:38 PM (GMT-6)


auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 11:22 AM (GMT -7)   
HI
I have just been diagnoised with IBS, I have had alot of food allergies,and I have ciliac,and Ic. So my diet already is very limited.

But this Ibs has been a rude of wakening. I have never experienced such pain in my life. from diareaha to low back pain,to right side

pain to constipation. I have read and re-read letters from Ibs people. My heart breaks and I totally understand. Two different doctors have told me it's Ibs,

I thought I was dying. They just put me on dexilant,I don't know if it helps yet. Does anyone know about this drug? I am afraid to eat at all,and then


I feel weak. I hope there will be and end to all of this soon.

aunt B smhair

torunafter
New Member


Date Joined Feb 2010
Total Posts : 3
   Posted 5/20/2010 3:28 PM (GMT -7)   
Have you tried doing a water fast? If you do some research on it, people will say how the body can heal itself of many conditions if you give it a chance, if the body isn't focused on processing food than it can catch up on cleansing your blood and healing tissues. Some people go for 40 days (it's recommended to have supervision this long), but I think for you even a week long fast would be beneficial.

shawn12
Veteran Member


Date Joined Jul 2004
Total Posts : 1293
   Posted 5/20/2010 3:34 PM (GMT -7)   
This pain is in the upper part of your body or below your navel or all of the above.

It makes things harder when more then one thing is going on at a time.

What were the doctors recomendations for you to take? Any?

What meds are you on now?
Forum Moderator
 
I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.

Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.


auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/20/2010 4:20 PM (GMT -7)   
I take dexilant for my Gerd,and he gave me hyoscyamine,

I wonder if anyone has taken ( hyoscyamine) Does it really
help or not,

Aunt Betty

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/21/2010 4:14 AM (GMT -7)   
I asked my Doc about doing any more tests, in prep to ask about the Sitz Marker test and before I could even ask he shot any more testing. I guess I have hope that I get Juandice, 100.4+ temp, bleed, faint, or rupture my Gallbladder. All my Doc"s say is it's IBS, anxiety, or stress related. I ask how is it stress or anxiety related when I wake up and vomit or have diarrhia or both at the same time and all my problems arise when I eat try to eat or drink. I'm going through hell, I'm in medical purgitory, and I am fustrated. Right now I can't even have Chamomile tea without needing to vomit, about 30 min. ago I vomited 22 times in 15 min. projectile vomiting that's how it usually is, and then had diarrhea, and now I need to vomit again. By all acounts from my tests I should be a forty year-old man having the time of life enjoying my 2 kids and perfectly healthy. I don't understand medicine or the practice of it and as time goes on I have less faith in it that it acvtually works. Maybe I should say that it works sometimes, but vast improvements need to be made in all aspects of medicine.

Post Edited (pappardelle) : 5/21/2010 5:42:23 AM (GMT-6)


auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/21/2010 4:38 AM (GMT -7)   
oh mY,YOU POOR THING. i CAN'T IMAGINE STARTING OUT

MY DAY LIKE THAT. i HAVE NO ANSWERS,MAYBE mAYO CLINIC CAN HELP. yOU NEED hELP. i WILL BE PRAYING FOR AN AN answer!

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/21/2010 4:53 AM (GMT -7)   
That makes both of us praying for an answer, but if I go to the Mayo Clinic I have to pay out of pocket, so I am stuck in a system that can't help me. I have tryed diets of all kinds and maybe it buys me a week to three weeks relief, and then my symptoms come back worse than before. Each attack gets successively worse than the last one. I have a nightmares that my gallbladder ruptures and I wake up in ICU on the warpath. But quite frankly it has dominated every aspect of my life. I don't know how I can go on a vacation like this, but I am, I'm just hoping I find some enjoyment and have sometime of thinking of something else.

auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/21/2010 5:05 AM (GMT -7)   
I had a month that was awful.The pain was so bad.
I don't know how you do it. I hope you will be able to
somewhat enjoy your vacation. There has to be something that is triggering these attacks. I just found
that the olive oil I was eating on my baked potatoes,was making me sicker and sicker. I have not 
been able to have dairy for years,si I was putting olive
oil on my baked potatoes. No can do. I will havr to think of something else.????

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/21/2010 6:04 AM (GMT -7)   
What's your reaction to dairy, if I may ask? Are you Lactose intolerant? It's funny you mention that, I can have some dairy on a good day but very little. But, if drink milk it's like castor oil for me, I vomit within 10 min. of drinking it. I have never been Lactose intolerant before 2 years-ago so I doubt I have it now. When I do vomit milk, it' projectile. It' the strangest thing. Where's your pain on the right side? Last week I was at work and I rubbed the RUQ of the abdomine and I had a 7 pain on the pain scale the 1st 30 seconds approx. then it shot up to an 8 and lasted for 15 min. Has that happened to you or anyone reading this?

auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/21/2010 6:20 AM (GMT -7)   
believe me I bet you have lactose intolerence. Now I read that
dairy is very bad for IBS. I was never lactose intolerent before
either. It came all of a sudden. So please don't discount it.Also
my pain is in my right side,by my waist. It comes and goes. It
can be pretty sharp at times.I am sure you are on a low fat diet
for Ibs. What are some of the things you eat?I just feel that something you are eating is triggering your attacks. I guess because of all my allergies,I am so aware of what the wrong food can do to one's stomach.

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/21/2010 10:58 AM (GMT -7)   
I throw up small amounts of milk, 8 oz like I said ten min. after I drink it and it seems once it hits my stomach for whatever reason I throw it up and that is my only symptom with milk I think because it never gets a chance to be digested. The more fat it has, also, the quicker it leaves my body. I have for the most part no other problems with other dairy products, that's not to say I have not thrown them up over the past two years but as with milk it does not get a chance to be digested. My Gastric-Emptying time from my last is 77 min. so from the time I swallow to the time it finally leaves my stomach is rounded up an hour and 20 min. I confirm this with pain meds not just pills but liquid also. I don't feel any effect until it leaves the stomach, and whenstart feeling the effects of the meds it's usually 1 and 1/2 hours later. Needless to the timing of meds is a bit complicated sometimes. I don't mean to be gross, but I throw up whole bits of food. What's weird is when I make polenta I sometimes use milk, I have never thrown up polenta, knock on wood, so far. I get RUQ pain from just about anything I eat and is usually worse at night, I was like kerimon last night pacing back and forth. I get pain even with foods that are in my diet. I have diarrhea almost daily. I have vomited just about every substance you can eat or drink. I have been on a glutten free low fat diets , got a week or two of relief, boom, I get an attack while on the the diet for a month and a half or two months. I have been on a liquid diet with only mashed potates made with chicken stock and garlic, oatmeal, and polenta, only because I could not stay on a liquid for more than a week. If my GI ever wants me on that diet again, then he will have to admit me to ensure I stay on it otherwise it is not going to happen on my own. With that diet I started feeling better so I added things in little by little, but I could not think of a cause for the start of that attack. After about three to four weeks, one day I could not hold anything down. I smelled food I would vomit, look at food vomit, drink water vomit, drink warm water vomit, eat ice chips vomit. The pain was unbearable. The diarrhea was bright yellow and stained the the bowl slightly, I still say it sounds like bile diarrhea, but I have my Gallbladder still, and of course my doctors discount that, but have never had diarrhea that burns as much as this, feels like it literally strips my skin off. I have vomited Gatoraide, jello, cold water, warm water, oatmeal, mashed potatoes,crackers even saltien crackers, juice, veggies, all kinds of soups, meats. I don't know how, but I have not lost too much weight, but this last attack I did lose 15 lbs. in ten days. Of course, my doctors are not too concerned by that, and did not bother to tell them that I nearly fainted last Sat. Why, because my Doctor said that there are no more tests to do, and unless an attack have someting different assosiated with it like juandice, 100.4+ temp, blood in vomit or stool, or major weight loss, that there is nothing they can do for me.

auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/21/2010 11:17 AM (GMT -7)   
I can't even imagine living like that. My thoughts and prayers are

with you!Hopefully someone SOMEONE will be able to help you!

Aunt B

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/21/2010 11:51 AM (GMT -7)   
Thank you for responding it's nice know that perfect strangers can be caring and sympathetic to one anothers situations and have an intellegent conversation. You have made terrible a little more tolerable and comforting. It's the little things I guess, that can still make a difference. Talk to me anytime I have found your dialoge very helpful, and if anyone else has anything else constructive to mention please...respond.

shawn12
Veteran Member


Date Joined Jul 2004
Total Posts : 1293
   Posted 5/21/2010 1:27 PM (GMT -7)   
pappardelle

when was the last time they checked to make sure your ulcer hadn't flared up again?

also have you ever heard of cyclic vomiting syndrome?

It really soounds for the most part you need a doctor to work and help you out here more.
Forum Moderator
 
I am not a doctor. All information I present is for educational purposes only and should not be subsituted for the advise of a qualified health care provider.

Please make sure you have your symptoms diagnosed by a medical practitioner or a doctor.


auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/21/2010 2:14 PM (GMT -7)   
I so feel your pain,and yet I don't. i do know that through my faith,I have gotten through some tough
times/ I hope you have your faith to lean on. Believe me it helps.

auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/26/2010 3:53 AM (GMT -7)   
I am hoping you are getting some relief from your IBS. Some day's I can get pretty discourged,not only with pain,but not being
able to eat like a normal person. It can be very depressing. At least what we are eating is healthier than most. Just something to hang on to.

pappardelle
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 5/27/2010 12:11 AM (GMT -7)   
Thank you auntbetty for your prayers and being there for a stranger. You really made a difference to me, I was in hell and you made hell more bearable. My attacks has subsided some what today. I was in the ER last night to get Zofran and IV fluids, after 8 days in a row of vomiting and barely being able to keep water or tea or even broth down, and have watery diarrhea. I was so weak and dizzy I couldn't walk straight and I was surprised that I didn't faint. I always have perspective that it can get worse, that's not to say that I don't succome to meloncholy , because I do from time to time. I have to leave this the Maker's hands, and I pray a lot. I know what you mean about food though, I love to cook and I love to eat, and there's times I feel like I got at two things that I love robbed from me. According to all the tests I've done, I should be a healthy man enjoying my family and cherishing these years, and I can't do this. I also wanted to say thank you to shawn12, and have given thought to what you have said. I have looked up CVS and you could be on to something. But I'm just not in a hurry to ask my specialist about this. It's another diagnosis where it's very challenging to control and you do it, it sounds like, though diet and medication. I have tried all the meds that they are willing to give me without success, and diets help maybe for a week or two, maybe a little longer, but sooner or later I will be right back to the same spot or worse than I was in before. I just don't see the benefit to me in asking about this diagnosis. Furthermore, in going back to my GI Doc he's just going to recommend the same diets as I was on before. There are no new meds for me, I have been given all the meds he is willing to give me. So what's the point?

Post Edited (pappardelle) : 5/27/2010 12:31:20 PM (GMT-6)


auntbetty
New Member


Date Joined May 2010
Total Posts : 14
   Posted 5/27/2010 4:48 AM (GMT -7)   
OH please,Don't give up. Which i totally understand that you would. NO ONE,NOT NO ONE should suffer like you do,every Day! Don't forget,the old
saying about the squeaky wheel. Keep On complaining,and don't stop! Somehow,someone will have to listen to you! Yes! you should be able to live
a normal life,but we can't think like that. WE are different,everyone who suffers with with stomach issues. I have taken so many foods out of my diet,
I sometimes worry,that I am not geeting enough vitimins in me. And since I can't take any vitimins,It is tough. But we must keep going on.Do what we
have to do.eat what we have to eat.And really TRY to keep positive,which can be very diffucult. We can do this! You are a strong person.I hear that in
your letters. Stay Strong! Keep Praying!

Aunt B
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