Docs are confused and I'm not crazy...

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2suns
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/28/2008 11:50 AM (GMT -7)   
I found this forum this morning. I just spent the last 5 hours reading through your posts and would like to ask the "real experts" is this Crohn's?
 
In early February my 2 sons came down with the "flu", vomiting and D.  about a week later, Mom got the runs...and they have never left.  I can control them with Pepto at every meal and severly limiting my diet.  In the meantime, my dad signed himself into hospice and in Mid March passed away.  (I'm a daddy's girl)  During his first several weeks in hospice, while having D constantly, I started having panic attacks.  PCP put me on Xanax, never did take a full dose only half of the smallest dose possible.  I've never taken more than 3  one half doses (total of 1 and 1/2 regular dose) in a day --- the day we buried daddy.  PCP says I've got a panic disorder and to go the mental health clinic.  I don't "need" the xanax unless I get really stressed out and have an attack.  In the meantime, I've lost 32 pounds and still have the runs.  Finally found a Gastro doc, who would listen and had my 1st appt on the 19th of May. 
 
Since then I've had an EGD with biopsies, colonoscopy, gallbladder sonogram, SBFT, stool tests and bloodwork.  The EGD showed "red spots with white halos with no bleeding", erythematous gastropahty and said spots in the duodenum.  He claims to have never seen those "spots" before, called in a 2nd doc who said he'd never seen them before.  The colonoscopy shows colonic angioectasias.  The terminal ileum was normal.  The cbc and cmp were low normal in late February (PCP said because I was sick) and the celiac bloodwork was negative.  Stool testing was negative.  No results on the SBFT as of yet.
 
I have almost constant D, certain foods will go through and look almost identical as when I ate them.  The fatigue is unbelievable, my knees, wrists and elbows will ache.  The stomach ulcer meds, zantac, prevacid, etc. didn't help, and Immodium doesn't help
 
My follow up appt with the gastro is on June 10th and he has put me on Bentyl 2x a day.  I am extremely medicine sensitive and my first dose of Bentyl was not pretty.  I would go from hot to cold to awake to "zoning", lots of D, etc.
 
I can give more info, if needed, does this sound like Crohn's to you?

Dixie
Regular Member


Date Joined Apr 2004
Total Posts : 407
   Posted 5/28/2008 12:00 PM (GMT -7)   
more like IBS from stess and anxiety - take the full dose of zanax at night before going to bed and seeif it helps any - just mt 2cents
     Dixie  
 May God Bless and keep you in his care.


Matthew
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Date Joined Oct 2004
Total Posts : 3932
   Posted 5/28/2008 12:00 PM (GMT -7)   
It may be CD, yes. Certainly most of us have had major Life Crisis cause flares ( often our first knowledge of our illness). Losing a close family member certainly qualifies. However, I don't see any reports of ulcers or general inflammation here. You might also have IBS. I generally hate the term, since its really a non-diagnosis ( a way to say "I don't know!" without saying it..) in some ways. However, you may develop CD indications later. Another thing, you said the children were ill? This actually sounds like a viral or parasitic infection.
Please take care & let us know what your doctors find out, Ok?

Sincerely,
Matthew

Celey
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Date Joined May 2007
Total Posts : 1284
   Posted 5/28/2008 12:02 PM (GMT -7)   
Well... I wouldn't say we were experts... a lot of us are just suffering from Crohn's and don't have any medical background. (Not to say that there aren't those here suffering that do have a medical background because I'm pretty sure there are... from what I've read)

But usually Crohn's is found in the terminal illeum... (Just because it's not doesn't mean that it's not Crohn's because it can occur just about anywhere in the digestive system), but I guess what strikes me as this not being Crohn's is your CBC.... I think that's where they also test your white blood cell count...

And if you were having inflammation from Crohn's, it would be higher than normal... not lower... (Again, I'm no medical expert)

Do you have abdominal pain... and if so, where is it located? *Maybe what you have is IBS, but I don't know much about that... or whether it would cause you to lose so much weight...*

As for the fatigue and aching joints... You should tell your PCP about that and ask him if he'll refer you to a... rheumatologist...

The fatigue and aching could be from all the stress you're going through right now, though. *Stress can hurt... and it makes tummy problems worse...*
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Illy
Regular Member


Date Joined May 2008
Total Posts : 117
   Posted 5/28/2008 12:11 PM (GMT -7)   
do you live with your mother and son, or were you all living together at one point?  it is likely not a coincidence that they got D at the same time.  there are bacteria and/or parasites that can pass between family members.   esp. if it hasn't left, it's more than a short term virus.  you should all get tested by a PCP or GI.

2suns
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/28/2008 12:20 PM (GMT -7)   

Wow...that was quick...Thank you all!

Matthew - This actually sounds like a viral or parasitic infection.
The stool testing was negative for cdiff, parasite, etc.

Celey - Do you have abdominal pain... and if so, where is it located?
Yes, Usually below my rib cage on the right and then "spreads" or will start right at the tip of my breastbone. My stomach will visually roll and you can hear it gurgling (sorry wish I had better "words"). My D is mainly in the mornings, from the time my feet hit the floor until about noon.

Dixie - take the full dose of zanax at night before going to bed and seeif it helps any
I'll give it a try!

Illy - The boys were better in 3 to 4 days.  Mom (me) is the only one in the house that hasn't gotten better.

Post Edited (2suns) : 5/28/2008 1:23:50 PM (GMT-6)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/28/2008 12:28 PM (GMT -7)   
Visually roll? *That's interesting... //@.@\\'...*

Hmm... You know... Maybe this could be some kind of food allergy that you're having, too... What have you been eating?
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/28/2008 12:29 PM (GMT -7)   
I think you have been given some good advice already. But my one other suggestion test wise would be to have a capsule endoscopy. With this test you swallow a pill camera and it takes photos as it moves thru your system. This is one of the best ways to diagnose Crohns, because you see the entire intestinal tract. Especially the small intestine which you can't see with a colonoscopy. Keep us posted on what the docs say.

P.S. I take Xanax myself occasionally for my anxiety. I personally would only use that for those times you are feeling anxious. My Crohns effects me usually only in the mornings too. After noon I tend to feel a little better.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


bektold
Regular Member


Date Joined Jul 2007
Total Posts : 456
   Posted 5/28/2008 12:32 PM (GMT -7)   

The rough mornings and gurgling are both pretty common for us. 

Whatever you do, don't let your doctor get away with "it's all in your head"!  Yes, stress can make things worse, and you've certainly had some major stress lately.  But as far as I know, diarrhea is not a symptom of mental illness.  A doctor tried to brush off my symptoms as all in my head (he actually told me I had "old lady syndrome"), and my body chemistry got so screwed up that I ended up in the hospital.  If you don't think you're getting the care you need, get a second opinion.  Or a third.  Whatever it takes to find the problem and treat it.


2suns
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/28/2008 12:37 PM (GMT -7)   
Grilled chicken breast, scrambled eggs, Yoplait yogurt, dry Honeycomb cereal, rice, seedless grapes, watermelon, green beans, peas, turkey bacon, homemade chicken soup, white milk...bland stuff.

Stuff that I can't eat and/or cause more intense aching; noodles, breads, granola bars, OJ, meatloaf, refried beans...all of those look like similar when the come back out.
 
Quote -  "A doctor tried to brush off my symptoms as all in my head (he actually told me I had "old lady syndrome"), and my body chemistry got so screwed up that I ended up in the hospital."    I had that happen when I had a complete hysterectomy at 33 due to severe endometriosis...they gave me HRT for 6 months and then stopped it.  It wasn't pretty. confused

Post Edited (2suns) : 5/28/2008 1:42:12 PM (GMT-6)


Celey
Veteran Member


Date Joined May 2007
Total Posts : 1284
   Posted 5/28/2008 12:37 PM (GMT -7)   
Yeah... This definitely doesn't sound like it's 'all in your head'... The stress is probably definitely aggravating things, but I highly doubt it's the cause...

*Really curious as to whether it could be a food allergy... or maybe lactose intolerance... I know dairy product consumption while I was lactose intolerant and did not know it at the time, made me feel very ill...*

Interesting foods you listed...

Maybe you have a non-celiac gluten allergy... *The foods you listed that cause you problems sound like they'd all contain gluten...* And some of the foods you're still eating probably contain gluten in them as well...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Post Edited (Celey) : 5/28/2008 1:40:21 PM (GMT-6)


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 5/28/2008 12:47 PM (GMT -7)   
Sry for yur loss. Try to get yur diet balanced again, suggest something like salmon, possible yur bowel is sticky, and take time out to relax and stay hydrated. Since the doc is going with antibiotics, my suggestion of getting some sun will hafta been limited. The SBFT results mite help with diagnosis, but inflammation can occur throughout the tract in chrons. I concur the above suggestions lean towards the recent events, but either way you should take time for yourself. I dont like the pepto if u have angioectasias.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 5/28/2008 5:30 PM (GMT -7)   
I'm sorry for your loss of your Dad and all of your illness problems as well. I was diagnosed with Crohn's shortly after my mom was diagnosed with lung cancer. I do not believe that stress "caused" the Crohn's but maybe it just pushed me into a flare. I agree with the camera swallow test. You can also ask for a Serology 7 blood test from Prometheus labs, which can help to confirm a diagnosis. Be kind to yourself, grieving is very tough on our bodies and minds!
49 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- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 5/28/2008 5:40 PM (GMT -7)   
The spots they saw that they had never seen before are not in your head they are in your gut. I would take those films to a university hospital and let them find a doc who has seen them before and can tell you what they are. If you are lucky they will have a GI an internist and a Rhuemy look at hyour history and tests results and they will come up with answers.
Sj

2suns
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/28/2008 6:32 PM (GMT -7)   
Thank you all!

I'm becoming more convinced that this is not all grieving/mental/stress, it may be a part of it, but isn't all of it.

Thanx again!

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 5/28/2008 7:16 PM (GMT -7)   
Always the possibility of Crohns & IBS together too. I agree stress is aggrevating whatever is going on in your gut. Lots of good suggestions here...try a liquid diet for a couple of days and slowly add foods back that are low in fiber & fat. Try and stay away from dairy during this time too. That way maybe you'll be able to determine what if any trigger foods are causing you grief. Your weight loss is nothing to sneeze at....even though they have done a pretty good workup on you already I would seek out another doctor. This IS NOT in your head! Can't comment on the capsule as I have not had this done personally.
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 5/28/2008 9:02 PM (GMT -7)   
Stress of moving 250 miles brought on my real bad symptoms that diagnosed me. But my symptoms weren't normal, the pain was too high in my abdomen even though the stricture was at the terminal ileum. So hang in there, keep bothering them until they figure it out, and don't let them intimidate you. You know what makes sense for your body.
diagnosed w/Crohn's 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, omeprazole, fish oil, sublingual B12, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 5/29/2008 3:05 AM (GMT -7)   
Unless they had you do a 3-day stool collection, the parasite test is not adequate to the task of detecting parasites. Most MD's in the USA discount the possibility of parasites, but really should pay more attention now that global travel is a reality.

Also, ask to be tested for pinworms. I don't know if it is a stool test or a blood test. They are airborn, so you can "catch" them from someone else.

Good luck,
-Razzle
Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, T- & B-Cell Lymphopenia, malabsorption/malnutrition, Lyme Disease (Igenex Lab IgM WesternBlot positive/CDC negative), etc.
Meds:  Pulmicort, Injectable Vitamin B12, Herbs, Nutritional Supplements, Homeopathy.


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 5/29/2008 12:28 PM (GMT -7)   
The fact that your kids got sick at the same time, suggest to me that this was a viral infection. In your case, added stress in life may have triggered an IBS attack. While I still have trouble with the term, some now believe IBS is ALSO an autoimmune problem like CD. Just not as obvious..
However, I AM NOT A DOCTOR, so take the above with a grain of salt..

Sincerely,
Matthew

MikeB
Veteran Member


Date Joined Mar 2006
Total Posts : 1169
   Posted 5/29/2008 1:14 PM (GMT -7)   
The pain you report and some of your other symptoms sound suspiciously like gall bladder, especially the location under the right rib cage and and radiating pain. You said you had a gall bladder sonogram, which will show stones (usually) but stones are not the only cause of chronic gall bladder disease. Have you also had your ejection fraction measured? If it is low, even in the absence of clear stones, you may need to consider a gall bladder origin for at least some of your troubles, and luckly that is rather easily fixed. Being female also increases your risk of gall bladder disease, ad does having children and being overweight (not that you were -- but if yuo lost 32 pounds I would assume you may have been carrying more than minimal weight). I woild definitely propose an ejection fraction test if you have not had it.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/29/2008 1:30 PM (GMT -7)   
With the D you are suffering with I might suggest as Celey did to lay off the milk. When I drink milk I get abdominal cramps, bloating, D & gas. I am also wondering if you should lay off the grapes and watermelon for a bit too and see if that helps. MikeB has some good suggestions too. Hope you get things figured out and get feeling better soon too.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


2suns
New Member


Date Joined May 2008
Total Posts : 6
   Posted 5/30/2008 7:46 PM (GMT -7)   

This morning was terrible!  I ended up with D until it was yellow green water, then the shakes, etc. kicked in.  I called the docs office and spoke with the nurse and said, "I've had enough.  Should I go to the ER?"  We talked and she said she'd call me back.  The doc says the gallbladder sonogram and SBFT were negative.  He wants to do a 72 hour fecal fat test.  The biopsies aren't back yet.  He did say that he's not going to stop testing until he finds the root cause.  So now I get to aggravate the D for 4/5 more days!

Am I right in assuming he's think pancreas now?

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 5/31/2008 7:10 AM (GMT -7)   
Hi 2suns, I've been in your shoes, My best advice to you is do what the doctors want, there are so many things it could be, I've done all the tests it took them almost 2 years before they said it was crohn's. I think most of us have been through more test than we can count on our hands & toes. From what I have experienced the doctors don't just jump and say crohn's they want to be sure. I have the same pain and I have crohn's they don't think its the crohn's that is causing it. So, I just went and had another camera pill on the 29th of May.Most of the time your pain it will feel like your appendix are about to burst, And I've had that pain to.I hope you have a good doctor you can trust and just do what he/she tells you and they can most likely figure it out. I understand the not knowing can drive you crazy but you don't want the wrong diagnosis.


Dawn
49 Female
Dx June 07 Crohn's take asacol 2x3 a day , entcort 1x2 day ,lotrel for HBP , omeprezole for stomach , potassium , one a day crohn's & colitis therapy , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08
Dx Bipolar May 08

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