Ill, Vomiting, Pain, Nausea, Weakness, Dizziness: nothing wrong?!?

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hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/24/2009 10:27 AM (GMT -7)   
Okay, I guess I should start by saying that I have been living a 2-year long IBD diagnosis ordeal. I was told in the beginning that I had "focal active colitis" and that it would go away with azulfidine treatment. It didn't, and I keep going back & forth between being ill & being okay (not great, but okay). I have had blood in the stool, with usually 4-7 bms a day. I had lost 50 lbs. Small bowel follow through showed inflammation in LRQ. Most other tests were normal. Stomach ulcers. Migraines. Ear problems (needed tube in ear). Abdominal pain. Stuff like this for the last couple years... I recently went to a new GI at a teaching hospital who went over my records & biopsies & said that I had microscopic (lymphocytic) colitis. She put me back on azulfidine, but a double dose of what I was on before. She did tell me that early in the disease, crohn's resembles microscopic colitis, so it may possibly still be CD, but they were going with microscopic colitis. I felt like at least I was told it was IBD, and that it would probably come out as crohn's down the road as my PCP had told me. She told me that the "lesion" on my bum was something that people with crohn's get, but that doesn't mean I had crohn's.

I was doing pretty well. My BMs were down to 4ish a day. Then I started to feel under the weather again. I had been under a lot of stress, so I think this might have played a part in it. My BMs totally changed. I went to not having any for days & days, then having diarrhea. Lots of mucous & blood in the mucous. I have had complete exhaustion. Then last weekend, I again was ill. Horrible abdominal pain. All I could do was curl up in a ball & try to keep from crying. I was nauseated. I only ate oatmeal that day trying to be calm to my tummy. The next day I was still feeling horrible, waking up in pain. I was dizzy so I figured I would eat, I had a piece of toast with butter with a tiny glass of milk. It hurt after eating. My husband asked if I wanted some potatoes & it sounded good, so I thought I would try it. about a half hour to an hour later I was in the the bathroom vomiting violently. It took some retching to even get the vomit up, it seemed to come from my toes. I kept vomiting every 15 minutes after that for abotu 4 or 5 times with lots of bile. It was so painful, it brought tears to my eyes. It didn't feel like normal vomiting to me.

My husband suggested the ER but I didn't want to go since I have had bad experiences there. I decided to hold off & see if it would pass or call my doctor Monday morning, which is what I did. I couldn't get in to see him, so they suggested urgent care. I went & they did xrays & checked my urine (I have had lots of UTIs & also a kidney infection before). I had blood in my urine, but no infection. The doctor looked at the xrays & didn't like what she saw & printed my xrays to take with me & sent me to the ER. She felt I had a possible obstruction & that I had 2 strictures. At the ER (after a 3 hour wait) they gave me an IV & zofran & prevacid. Blood tests showed mild elevation of my WBC, but everything else was normal. They said there was no infection. I was told the xrays showed no obstruction, but they thought there was some inflammation & gastritis. (can they tell that from plain xrays?). I was sent home.

I hadn't eaten anything Monday or Tuesday because I was deathly afraid of the pain I experienced when vomiting on Sunday. Tuesday, I had called my GI as instructed by the ER doc. They wanted to see me right away, so I went down there. They did blood work & ordered xrays. My belly is not tender where they pressed, I am having most of my pain right around my belly button, and just above it. I was told it was probably just IBS. When I asked about the lymphocytic colitis, I was told there is nothing in my symptoms to suggest I was have a flare of that. I was told to drink gatorade & work my way to soup then solids as best I can.

They called & told me my labs looked good. I am so confused. How can IBS cause all this? What can I do? Does anyone ever go through a flare without having much show up on your bloodwork?

I am hoping to get my life back. If it's not CD or colitis, then I keep thinking it's something that my be fixable & I want them to figure it out already!!! It's just all so confusing. I want to be able to eat again & not have pain. I don't know what to do....
Live for today, for tomorrow you might just get hit by a semi.

Post Edited (hukleberrie) : 7/24/2009 11:35:10 AM (GMT-6)


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 7/24/2009 11:09 AM (GMT -7)   
Whoa Huckleberrie, I'm sorry you are so sick!!! I don't know where you live, but you need a GI who is willing to take care of you and follow your case when you get sick like this. Call your GI back and tell him/her how sick you are, and if you don't get the help you need , then see if you can get a new doctor. It's really hard in my experience to get help from ER or Urgent Care...you really need a GI who will follow this until you are well. Good luck and I hope you are better soon!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/24/2009 11:16 AM (GMT -7)   
I have already changed my GIs... I am limited & this GI is a very respected teaching hospital 3 hours away.

I have called them & told them I am still having problems. It wasn't my GI I saw the other day when I was there, but another doctor since my GI was unavailable. I am lost. I don't know how many times I have to bug them... I am just really, really tired of it all...
Live for today, for tomorrow you might just get hit by a semi.


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 7/24/2009 1:02 PM (GMT -7)   
Will your husband, or a good friend call for you? It's soo hard to be assertive when you are feeling so sick, but you really need help. don't give up...keep bugging them!
50 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 4 500mg pills per day, Metamucil and colace for constipation, probiotics


Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 7/24/2009 1:15 PM (GMT -7)   
What your experiencing sounds alot like my flares at times....major major pain that takes me fully out of commission, loss of appetite, vomitting til its just bile and beyond, all that 'good stuff' and yet I always get those same results too. Bloodwork shows fine, urine, everything shows normal. Half the times they never believe I'm having that flare, yet the signs are all right there. Hopefully you can get ahold of your GI or get put on a good course of meds to get things under control....for me cipro/flagyl do good when I'm in that bad of shape, or a course of prednisone and all those that they use to keep flares under control. I also find that yeah, sometimes just doing the liquid thing for a bit and giving the stomach a rest works well too, keep nourished but keep it easy to digest. Hopefully someting works out for you, keep trying for your doc though, bug them til you get what you need!
 


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/24/2009 1:28 PM (GMT -7)   
You know what I agree with Gumby, I think its time you ask your husband to get mad at these docs and get them to start treating you.

I want to tell you a little story. I had confirmed Crohns and had been in remission for at least 12-15 years at this point, but every so often I would have episodes just like you described when you went to the ER this lasttime. Everytime I would go they would end up giving me pain meds and nausea meds and they would diagnose me with "gastritis". Well this kept happening at least once or twice a year and I kept getting the same answer "gastritis". Well low and behold in January 2002 I go back to the ER with the same exact symptoms, always got the same treatment (pain and nausea meds) and told it was gastritis. So this time I go home and sleep off the meds and the next day it happens again, so I go back to ER. Well this time they did a catscan and a few different blood tests and lo and behold it was an obstruction. I ended up having to have an emergency resection.

My point is I don't want you to give up and continue suffering. Sometimes you have to keep pushing these doctors. Tell them you don't give a poop about their tests results, you only know that you are in horrible pain and suffering and desperately need to find out whats wrong.

I will definetly keep you in my prayers. No one should have to suffer like you have.

Giant Hugs,
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/25/2009 9:27 AM (GMT -7)   
I finally had a BM! But it was only two small dime size pieces & they were black.... cry

I am eating a little more & no vomiting. I guess that's good. A lot of pain though. Just around my belly button & just above my belly button. It's so confusing. I just want it to go away... Thank God for compazine. It has really helped the nausea. I guess I am optimistic today, but scared that this is never going to end.

My GI seems uninterested & seems to think nothing's up. I see my PCP on Wed. He's the one who thinks I have crohn's. I agree with him, but getting the GI to agree without a biopsy confirming it is next to impossible. No matter my symptoms or ulcers or small bowel follow through results.

My husband has been really great. But I think since we have been dealing with this so long, we are just used to these ups & downs & don't get as concerned. I just can't take the pain & vomiting. I feel like I am at the edge of a cliff...
Live for today, for tomorrow you might just get hit by a semi.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/25/2009 5:38 PM (GMT -7)   
Just got a call from the doctor. She was out a couple days & said my 2nd xrays came back "fecal loading". I guess I am constipated. Why, though?

So I am to do another set of enemas. But back to back. She wanted me to do them tonight & tomorrow. 2 each day. I don't like enemas. Not my idea of fun. I think I will just wait until tomorrow. I am too exhausted tonight anyhow.

She said to go to urgent care if I felt I needed an IV.

I think I am going to go to sleep instead. I ate. And I am so bloated. Ugh.
Live for today, for tomorrow you might just get hit by a semi.


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 7/25/2009 10:32 PM (GMT -7)   
There is a poorly diagnosed condition that resembles CD as far as symptoms go. Next time you get a colon biopsy, ask them to test it for eosinophiles. For more see: APFED.org

I assume that the previous biopsy was negative for Crohn's. This is one possible cause.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 7/26/2009 5:47 AM (GMT -7)   
IBS my arse!!! You are dealing w/a bunch of IDIOTS - except for your family doctor. God help the IBDers if this is a teaching hospital!! I shudder to think of the quality of gastro THAT teaching hospital is going to be turning out!!!

I'm willing to bet you are dealing AT LEAST a partial obstruction, possibly a high grade partial obsturction and that it is Crohn's in the small intestine. What is happening w/that "lesion" on the bum? Has no one offered you some prednisone or AT LEAST Entocort to try to reduce any inflammation and open up a partial obstruction? Your family doctor could script the pred or Entocort.

I can understand your feeling so rotten you don't have the energy to get angry so its time your husband gets angry enough to start PUSHING these ignoramuses! Your family doctor and that doctor in urgent care have more smarts in their baby toes than the idiots you've been forced to endure at ER and that teaching hospital gastro.

I would be PUSHING for an Agile Patency Capsule to be sure a Pill Camara Endoscopy could be done, or a nuclear Ceretec (Indium) White Blood Cell scan of the intestines or a CT Endoscopy. Your family doctor can order the WBC scan. I'm not sure about the APC and PCE. I think your family doctor can also order the CT Endoscopy.

So far yuu've encountered nothing but a bunch of incompetents in gastroenterology and ER. (((hugs))) and good luck!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/26/2009 6:54 AM (GMT -7)   
Well, I am hoping my IBD doc will actually take a look at all this. The others I have seen are not my actual doctor... That's all I keep hoping.

Can you still have a partial obstruction that doesn't show up on the xray?

What is fecal loading? Anyone ever heard of that? Is it just constipation?

I surely have appreciated my family doctor. He's so caring & knows what I have went through. He told me on my last appt. that if this was microscopic colitis, it's a really, really, really, really, really bad case of it.

BTW, the bump, or lesion as my IBD doc calls it, has gotten better. She had put me on Flagyl & Azulfidine & the Flagyl didn't do much, but taste horrid, lol, but once I started the Azulfidine, it went nearly away. Can't barely feel it anymore. Once in a while though, it feels like when I sit a certain way, that there is a sliver or something poking me there, but I don't think anything is really there. I wonder if it will come back since they told me to get off it.

I have been drinking & eating again. I drank 3 tall glasses of apple cider hoping that might help get things moving. And stool softeners. No luck yet. I am feeling so bloated after last night's dinner. First real meal since last week. Burping & pain. Ick. I hope something moves soon. I have noticed I have passed gas twice... So that's good right?

I hope the enemas get things going. She wanted me to do 2 each day. I thought you aren't supposed to do enemas that often...?

Ugh.
Live for today, for tomorrow you might just get hit by a semi.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/26/2009 6:56 AM (GMT -7)   
BTW, the ER doc gave me a script for Medrol, but the PA at the IBD clinic said not to take it. Now I am just on Prilosec. The GI at the clinic said to get off the azulfidine too, that it might be slowing me down.
Live for today, for tomorrow you might just get hit by a semi.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/26/2009 6:56 AM (GMT -7)   
Have you even had a small bowel follow thru (barium swallow and a series of xrays done)?
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/26/2009 6:57 AM (GMT -7)   
Yes. I had the small bowel follow through done Feb 08. It showed inflammation in the LRQ. Near the cecum they thought.
Live for today, for tomorrow you might just get hit by a semi.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/26/2009 8:02 AM (GMT -7)   
Well my personal non medical opinion is, if it walks like a duck, quacks like a duck, its a duck! Hukleberrie, keep advocating for yourself, you are sick and need to get the help you deserve. Any chance you can get your doctor to do a pill cam on you like CrohnieToo suggested. Alot of Crohnies had to do this test before finally getting their diagnosis. Good luck and big hugs sweetie!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/26/2009 10:17 AM (GMT -7)   
I did the 2 enemas... my bum is burning! Ugh. I hate those things.

I did go a little with them. Not much. Still bloated, but eating okay without vomiting.

I really don't have the energy to push this crap anymore. The PA brought in that GI doc who said I need to "get the crohn's idea out of my head. It's just IBS." Maybe I should just ignore it for a while.

I am sleepy. Time for a nap, I think. It's all becoming too much for me to handle anymore. I wish I could just sleep forever...
Live for today, for tomorrow you might just get hit by a semi.


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 7/26/2009 11:26 AM (GMT -7)   
ok regarding the biopsies - where in your gut were they taken from? from personal experience I've had colonscopies done & biospies not taken from the terminal ileum & sent home saying your grand & i was not. you may have had the early stages of crohns when they were taken - so if someone was to scope you again it may be a different story. they need to biopsy everywhere in the colon & the terminal ileum - they should be taking a minium of 5. just because things look ok on tests does not mean they are ok - especially if you have symptoms saying otherwise. Have you had a gastroscope done to check your stomach & duodenum -again you need to be biospied everywhere. also you may need a pill cam done - it will show up parts of your small intestine that the scopes cant see - however if you are at risk of an obstruction & your symptoms are suggestive of a possible stricuture/narrowing - this may not be the best test so a ct scan would be another option. you mentioned a barium being done showing inflammation in the lrq - near the caecum - this could possibly be the terminal ileum - a classic site of crohns - if you have inflammation on a barium you defo do not have ibs - blood defo not ibs either - vomiting defo not ibs. elevated white cell count possibly assoicated with crohns as in absess infection - you need to shout & roar until you are heard - not easy i know but recently i was in a situation where i wasn;t being listened to & i had to change gis - now i'm still quite sick but it was the best thing i ever did - i'm much more contented. by the by a good teaching hospital means crap - i went to a gi very well respected - so much so the gi i changed to was in shock over what was going on. - also note tests (x rays etc) can be interpreted differently by diff doctors
 
 


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 7/26/2009 11:28 AM (GMT -7)   
black bms can = upper gi bleeding - if it happens again bring a sample to ur dr and ask to check for blood
 
 


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/26/2009 3:19 PM (GMT -7)   
I have had 2 c-scopes, 2 EGD. First EGD was clear, second there was an ulcer. First colonoscopy had an ulcer, biopsy showed colitis, second colonoscopy with lots of biopsies done after a few months of prednisone & azulfidine treatment was clean. SBFT said inflammation in area of cecum, possibly ileum, or cecum or bowel loops overlaying the cecum.

This is already my second GI. I am too tired to fight on this. I guess if I get horribly sick then they will have to treat me. I am just kinda afraid of getting sicker...
Live for today, for tomorrow you might just get hit by a semi.


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 7/27/2009 1:44 AM (GMT -7)   
i'll let u in on something - i'm on gi number 5 - please don't get too tired to fight on it - you may have just come across a few drs unsuitable for you - you have something going on now & if they deal with it now you may not get sicker - bring someone in with you to the dr - i bring my mum when i know i'm not up for the fight & she does it for me!!!
 
 


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/27/2009 4:56 AM (GMT -7)   
My husband is coming with me to my appt. I am tired of being a pain for everyone. My mom went with me to my appt. at the IBD clinic but didn't come in with me. She's been too worried... I hate to cause her worry. My brother just died from cancer a year & a half ago. I try my best not to worry her cuz she thinks everything is worse than it is...
Live for today, for tomorrow you might just get hit by a semi.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/27/2009 6:17 AM (GMT -7)   
No one can help you get better Hukleberie but YOU! It sounds to me like you are just giving up too easily. If you want to get better, YOU have to stand up to these doctors and get some treatment. Otherwise, you are just going to continue to suffer. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/27/2009 6:36 AM (GMT -7)   
I finally had 2 BMs today. Still some black, then followed with okay soft stools. Still lots of abdominal pain around my belly button.
Live for today, for tomorrow you might just get hit by a semi.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/28/2009 9:09 AM (GMT -7)   
I think you are right, Nanners. I have given up. I just doubt I will ever get the care I need & I am beginning to think this is all in my head. Besides this is just all too expensive for me since I don't have health insurance.

I guess we will see how the appt. goes tomorrow with my primary doctor. I will keep you posted.
Live for today, for tomorrow you might just get hit by a semi.


hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 7/29/2009 7:44 PM (GMT -7)   
Well. No luck, doctor is of no help at all. I don't think he's looked at my tests or anything. He offered to send me to another doctor & that's it. He said I have a lot of air on the right side & he thinks I have more stool still in there. No help for my headaches, pain or bowel stuff. Just no help whatsoever. All he would say is that I have to make myself go somehow if I don't go for a day. I thought it's bad to use enemas over & over?

I don't know what to do. I can't keep this up. I am going crazy.
Live for today, for tomorrow you might just get hit by a semi.

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