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Anyone tired of MD's who have no answer but u continue to suffer?

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Posted 4/7/2011 5:35 AM (GMT 0)
I've been hospitalized 3x in the past 6 months b/c my body is rejecting food and I've lost a considerable amount of weight. I have multiple GI problems on tons of meds but I've completely lost all desire to eat, in fact, the thought of food makes me repulsed, mainly b/c anything I eat causes severe pain and severe lethargy. I've been through every imaginable GI tests every month many, many meds and l am now I have been indirectly told by an attending MD last time that may be psychological b/c they can't figure out why this is happening to me (even though I have been officially diagnosed w UC, IBS,severe GERD and Fibromyalgia, hummmmm) I was so frustrated that I couldn't reply; really chronic pain diarrhea muscle aches pain when I drink or eat--no I refuse to believe this is psychological. I am sick to death of the GI dept and really dont communicate with them, even though, I'm suffering b/c they really have nothing to say to me anymore. I love my pain MD and am grateful for his support but feel exhausted by the daily grind of CI/CP. Can anyone relate?
Posted 4/7/2011 6:48 AM (GMT 0)
Hi, BigLucy,
Seems like good synchronicity when I pop in from time to time and find a new post from you, although I can see nothing is improving with your GI issues. My gosh you must be exhausted! Are you still working - because if so, I don't know how you do it.

It's no wonder you've lost the desire to eat, considering what happens. Please don't take this wrong, but I wondered if finding a GOOD, compassionate therapist might at least give you some emotional support and relief. I'm definitely NOT saying what you've got going on is psychological, but by now you've probably got psychological as well as physical reasons to reject food. Guess I'm feeling pretty helpless as to what to suggest to you - what does your pain MD say about the whole situation? If you're still working, maybe the stress isn't helping things? I'm taking shots in the dark, and so wish I had more to offer, but know that I care.

You asked whether anyone can relate to what you're going through and I'm not sure that I can right now, although when I was trying everything (and every treatment, health professional, etc.) I could to alleviate my back, leg and foot pain a few years ago, and finally surgery failed, I began the long process of making some sort of peace with the fact some things just weren't going to get better. I've made some headway over the past 4 years in the "making peace" department, but only because I know I've got no other choice. But not being able to eat is so much more.

For now I'll just send hugs, although I know they're not an answer.
(((((((((BigLucy)))))))))))

PaLady
Posted 4/7/2011 11:08 AM (GMT 0)
BigLucy, I just want to join PALaday in offering a load of *hugs*
Posted 4/7/2011 2:34 PM (GMT 0)

   Dear Big Lucy,

    Sorry to hear you are still not diagnosed and still in so much pain. Have you considered going to the Mayo Clinic?

~~> Mayo

~~> University Hospital

 

*hugg*
  dani

Posted 4/7/2011 3:24 PM (GMT 0)
I can understand and relate to your frustration with doctors. I have been going through the same thing for the last 5 or 6 years with diabetes. I do everything they tell me to do and my blood sugar actually gets worse and I can't get any one to listen to me and start looking for a reason behind it.
Posted 4/7/2011 4:20 PM (GMT 0)
BigLucy I know exactly what you are talking about. I have both crohns and UC. According to my GI, there is a 5% chance of having both diseases and I am one of the lucky ones. I have been in your situation with the food before, and got into some real trouble over it. I was losing too much weight, my GI was getting real concerned over this. When talking to me about food he saw I was having a real hard time making myself eat something. I did not want to eat and I was afraid to eat because of the after affects. He explained it to me that it is real easy for eating to become a psychological issue for people with bowel diseases, in fact it is very common. He says he has several of us with this problem. Now at my appts he makes it a point to discuss my eating habits. Since all of your tests are coming back negative for anything out of the ordinary, this may very well be what this dr was getting at with you. Even today, I have very little appetite, many days I force myself to eat something, even if its a peanut butter sandwich followed by a pack of Rolaids plus my 40mg of Aciphex a day. I have severe GERD. Nausea is my constant companion and I live on Zofran for that daily. I know all too well how frustrating it can get. Take care.
Posted 4/7/2011 6:05 PM (GMT 0)
Lucy,
Have they tested your TSH? I had those symptoms & it turned out I was hypothyroid. On meds, I can eat, have lots more energy, sleep better & joint pain is much reduced. Didn't solve every problem in the world, but made a big difference. It's an easy blood test if you haven't already done it.

best wishes,
Tirzah
Posted 4/7/2011 7:52 PM (GMT 0)
Hi Lucy -
I'm glad you are getting some helpful responses. I'm no help with psychological things, not meaning that your problem is psychological either, but IMHO it's worthwhile to continue to try to find a physical answer to your problem! Doctors don't know everything and often don't believe patients. But some of it probably our fault, sort of, for not knowing the right words to use when explaining our problems. I know I don't know enough to get some of my points across!

Do you have reactions with everything you eat or drink, or are there things you tolerate? Have you tried keeping a food journal to see if you can find out if you have specific food triggers?

My GI doc still doesn't believe, and I suspect my heart doc doesn't either, that I get gastric reflux, which triggers tachycardia, which triggered coronary artery spasm, which was the reason for my heart attack several years ago. I realized my stomach and heart problems occured when I ate some meals, drank some things, but not everything. I finally found an allergist, the second one of those, who got me keeping a record, and it was the key for me! Once I had a list, I was able to find my foods on several websites of sulfite intolerances. Not that that's your problem!

Since finding one sensitivity, I have realized I am also sensitive to lactose and wheat, although those do not cause all my reactions. They do make me feel bad and give me gas, which hurts.

Another way to play the game: Theoretically, rice, lamb and pears aren't supposed to bother most people. You might try those first, then add one food at a time.

This is just an example, so keep on plugging!
Posted 4/7/2011 8:59 PM (GMT 0)
PS -- I also forgot to mention that, connected with my TSH, I was very dehydrated. My PCP would send me to the outpatient infusion unit for 2-3 L of saline a few times a week. The infusion unit also had me eat a popsicle or a little chicken noodle soup.
Dehydration & electrolyte imbalances can make it very difficult to eat. In my case, I had very, very low sodium levels/very high potassium levels. High potassium causes nausea & vomiting, among other things. Some people have the opposite electrolyte deficiency I had -- they have a potassium deficiency & too much sodium. A CBC could tell very quickly where you're at. My doc sent me outpatient to the hospital & they got the results back within 30 minutes.
There are many things that cause electrolyte imbalances besides thyroid disorders. Once we figured out what was the root cause of my imbalance I was able to discontinue the infusion sessions, but they sure were a godsend before I got a diagnosis. I went from about 300 calories/day to keeping down as much as 75% of my food (900+ calories) once we started the infusion sessions.

Alcie also gave some good ideas. I was told to stick to the BRAT diet -- bananas, rice, applesauce & tea. Since my potassium levels were very high, I didn't eat too many bananas but we quickly added soup broth, salt packets and anything else I could keep down -- which wasn't much. Like Alcie, I avoided dairy. An ice cream shop by me makes rice milk shakes so I went there or made my own at home with either rice milk or hemp milk (hemp milk has more fat & protein but fewer calories). The shakes were one of the few high calorie foods I didn't mind eating. Blueberry was my favorite. :) Low in potassium, low acidity, very tasty. :)

Hope that helps & I hope they find out what's causing the issues soon. I know I was mad as could be when they kept insisting I was crazy. They put me on anti-depressants which only made my thyroid slow down even more. Such a shame! You know your body. Stick to what you know & don't let anyone tell you otherwise.

peace,
T
Posted 4/8/2011 12:22 AM (GMT 0)
I want to offer you some hugs and support. I know well how it feels to be ill and being ignored by a dr. I suffer from GERD and at the end of 09 I was back to extreme nausea, fatigue, vomiting daily and losing my voice from all the acid despite being on Zegerid. My problems started when my insurance co stopped covering Nexium so I had to try other drugs in the same class, even some I used previously that no longer worked. My GP said it was probably a good time to get an upper GI to see what may be going on. So I went back to my GI doc. He agreed and scheduled the procedure. He told me that there was irritation and a significant number of non-cancerous cysts in my stomach which he removed and said the cause was a side effect of long term PPI use. He doubled my Zegerid and told me to see him in two weeks. Well the nausea persisted, and I told him I felt like my food wasn't going through fast enough.
He said my problem is I am obese and that I should go to over-eaters annonymous or weight watchers and come back in 6 months if I still feel ill. No matter what I said he said that, 6 times. Then he tried to push me into taking a drug I did not want to take. It was that drug that speeds up digestion but caused permanent involuntary movements on a regular basis.

He did not want to do any more testing, handed me my coat and said good luck. I was completely humiliated. It took me months to recover from that experience. He was a dr who wants only easy cases and procedures he does not have to fight with insurance on.
Best wishes on your journey for wellness.
Posted 4/8/2011 4:28 AM (GMT 0)
First, I want to thank all of you for the replies, made me cry, but these days that's really easy to do.
palady: seriously, I dont know u but I luv u for always being there for me. Oh, I am fully aware I have psych issues , but see my fav therapist raised his rates to 140.! I know and it's not feasible ( working pt and I took a big step and finally got a house cleaner b/c I just couldn't do it anymore).
OMG! I just spent considerable time responding to everyones comments and somehow everything but the first paragraph was erased and I don't know how it happened. Too exhausted to rewrite now. I'll try to check in tomorrow.

I did want to say one thing my pain MD said when I told him of my bad hops experience. He admitted the medical field is at it's infant stages and there's a lot doctors don't know and would never admit because of their egos and need to feel omnipotent--I love that MD and he better not move or retire.
Posted 4/8/2011 5:08 AM (GMT 0)
BigLucy...

I'm sorry for all you are going through.... I just wanted to follow up on what Tirzah said.  I, too, was finally diagnosed w/ severe hypothyroidism.  I had many similar symptoms to what you describe.  Not being able to eat - for a variety of reason, including severe nausea/vomiting.... extreme exhaustion/lethargy.... chronic dehydration that would put me in the hospital almost on a monthly basis.  Seriously - I think one year, I was hospitalized for about 10 weeks total. 

I have the opposite of what Tirzah has - very low potassium and normal/high sodium.  I also have hypoadrenalism, which is a whole additional thing.  All of this led to dehydration and electrolyte imbalances as she stated.  Over time, I learned to somewhat control it through diet.... also, I always have a gatorade or some type of similar drink in hand. 

I'm now on synthroid for my hypothyroidism and on/off meds for my hypoadrenalism.... it helps, as well as the other things I mentioned.  Anyway, I agree that getting some blood work and seeing where things are at for you is a good start.  You've got to figure out what is going on.... It's so darn frustrating when you have things going on and you don't have a firm diagnosis.  I'll pray that you can figure out everything....and soon.

Hang in there and keep posting when you can. 

Love, Tina

Posted 4/8/2011 8:55 PM (GMT 0)
Hi, Lucy,
I just had to say your words touched my heart. Thanks so much, although I'm still not committing to being around as much as I used to be, so please don't take it personally if I don't respond to a post.

I found several of the responses you received here to be very interesting and informative re: things like unusual allergies, thyroid problems that maybe require more than a quick blood test to diagnose, etc. I know doctors are busy, but one thing I think that's too often lost is intellectual curiosity on their part. Maybe your PM could help you find a GI doctor who is still curious, and willing to dig into more unusual possibilities.

I don't know if it would be helpful at all, but every now and then I catch Dr. Oz's show and he seems to have some interesting and even controversial MD's on. I wonder if there's any info on his site that could help lead you to better help than you're getting?

((((((((BigLucy))))))))

PaLady
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