Frustrated with new gastro doc, said no to previous diagnoses UC of 8 yrs and now thinking chrones

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mzimmy
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/2/2010 4:00 PM (GMT -7)   
I'm a female 27, married with 3 kids.

Ever since I got my period at the age of 12 I began to experience severe abdominal pain and diarrhea. It always seemed to happen before my period started and would end a week later. The peak would be the first 2 days of my period. I would be on the toilet doubled over crying and puking from the pain.

One night in my teens it was bad, my period was not due for 2 weeks or so. Worse pain ever that I had experienced. I ate popcorn with garlic salt before bed. Told my mom as soon as i was hurting (midnight) told me acid reflux, get heating pad, sit up on the couch. No relieve. She came up and spent the night with me. With morning and no relieve it was time to go to ER, i couldn't stand up straight. "gastroenteritis" was their diagnoses. I had it happen again the following year, same diagnoses.( this all in NH where I grew up and now live again)

(moved to FL)I got pregnant at age 18 (by my now husband) the 1st trimester I experienced the same severe pain with water diarrhea. I did my normal thing, chug chug and chug the pink stuff. After I had my daughter, again same thing. Next pregnancy, the same exact thing. but my last pregnancy was different. 7 weeks into it I had same symptoms expect I was bleeding. Straight to the ER, with symptoms and consults UC was my diagnoses and I was treated for it. (all taking place in FL). I moved back home to NH. Colonoscopy and endonoscopy was done, confirmed again "mild" case of UC. I also had anxiety. Which was told made my "mild"...."severe"

I started college last year, week 2 flar up that never went away. Only comfort was my pain killers(switching between vicadin and percocet). (sulfazalazine, predisone tappering off and pain killers was treatment) Since it never went away for a year straight i was sent to a specialist with UC and chrones in boston...last Monday. His answer.....not enough evidence to say UC. His opinion, chrones or nero issue. Primary assured not nero. (thankfully) GI ordered me off all my meds treated UC, including pain killers.

I am now on Imodium 4mg 3x/daily and hyoscyamine sulfate .125 2x daily. I have not had a BM since, i cut out the middle dose of imodium. Still no BM, no pain though. POOF symptoms gone. I am feeling the sense of diarrhea but I don't actually go.
Old symptom came back though, harder then ever...anxiety. I'm taking my valiums for it.
GI is leaning towards chrones b/c of when he pushed in on my esophagus it hurt badly..but only when he pushed. During my flar ups of "UC" I always complained of pain in that exact area but dr's said it was nothing.
I guess I am just looking opinions (of course not taking as medical advice and to treat myself). Since his new scrips work and nothing else has...could it be Chrones? MRI scheduled for end of next month, it's gonna cost $$$$. (I posted this on the UC board too , to see what those diagnosed withUC think too) THANK YOU in advance!!! I feel so desprate to hear from other in my position...i feel so alone and helpless with my problem.

Aussie1971
Regular Member


Date Joined May 2010
Total Posts : 115
   Posted 8/3/2010 5:11 AM (GMT -7)   
Sorry to hear you've had such a horrible time. To be completely honest, I'm not sure if it's Crohn's or something else. The meds you are taking would do nothing to help my Crohn's. Having said that, it is a disease that effects everyone differently. Have they done blood tests to check for inflammation markers? What was the results of the scopes?? It sounds like your Dr needs to provide you with more info.

Best of luck.
39yr old Single Mum of 3 Girls living in Sydney, Australia. Diagnosed with Crohn's April 2009 after suffering for over 20 years.


Current meds: 6mp 150mg, Salofalk granules, somac, panadol osteo.

Failed: Vendolizumab clinical trial. Back on predisone, down to 35mg. Starting Humira in (hopefully) 4 weeks!

Also dx with Spondyloarthritis of the sacroiliac joints and psoriasis. Now suffering from steroid induced diabetes (again)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/3/2010 8:09 AM (GMT -7)   
Many folks have been diagnosed with UC when its really Crohns and vice versa. I see you have an MRI scheduled, but wondered if you have had a colonoscopy with biopsies taken. Those biopsies really help to let you know which disease you have. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & 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"*

misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 8/3/2010 8:28 AM (GMT -7)   
I agree with Nanners, getting a colonoscopy was the only true way they were able to diagnose me with Crohn's. You could have some form of IBS, UC, or Crohn's. With problems in your esaphagus that they aren't wanting to do another endoscopy as well. Taking valium for anxiety seems so extreme, if I took that I would be so sick!
Good luck with your MRI!! I hope they figure out whats going on quickly so you can be on the road to feeling better!! :)
28y/o F, diagnosed with Crohn's Disease at 25 y/o , 2000 units of Vitamin D , 1500 Units of Calcium
60mg of 6-MP once daily since Feb. 2010
 
 

mzimmy
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/3/2010 8:43 AM (GMT -7)   
i have had 2 colonoscopy's and one endoscopy. Both colonoscopys showed mild form of UC but tested negative on the biopsy's. Endo showed stomach to be extremly irrated and same with esophgus.
My new GI in Boston told me that the only true way for him to know if its Chrones is this high contrast wierdly named MRI, apparently its a special one that small town MRI's are not able to do, therefor I have to go to Boston for it.
As far as Valium...i have to take that, long story short....my mother in law tried to kill me infront of my three kids, chocked me out (blacked out).
I have been on this road of trying to get the correct dx since i was 12...i am 27 now. I'm fed up!!!!
I have been on the imodium (12mg, i find that to be way to high and half way through i dropped middle one since i had not pooped, per DR order) now for I week straight no BM's but I have not been eating much either....but now I am feeling extreme discomfort. Called doc, waiting for an answer.
To add to this all, I have two sick kids with high fevers...that wake up a lot, my 3 year old is so clingy and my poor son who turns 6 thursday now has it :( last night my 3 year old had fever of 104. It just a never ending story in my life.
I did decide to take this year off of college (would be 2nd year in nursing....kinda funny right?) So i can my health in order.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/3/2010 10:16 AM (GMT -7)   
Mzimmy never apologize for having to take a med such as Valium. Many of us with chronic issues have to use these meds, including myself who developed anxiety related to my Crohns. I would be in a world of hurt without sometimes. Its nothing I have to take everyday, but its there when needed. Hope the MRI provides you more answers. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & 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"*

mzimmy
New Member


Date Joined Aug 2010
Total Posts : 6
   Posted 8/3/2010 11:37 AM (GMT -7)   
Just got off the phone with DR. Told him I was expierencing discomfort in my abdomin and esophgus and have not pooped for 7 days. I don't feel constipated and drink 3 litters a day. He is taking me off them and if tomorrow no poop and same discomfort he wants me to go to hospital for possible bowel obstruction.... i dont know

ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/3/2010 12:16 PM (GMT -7)   
My colonscopies never showed anything and they only diagnosed my Crohn's throught the capsule endoscopy.  I was first told it was indeterminate/indeterminable colitis because they couldn't figure out if it was UC or Crohn's.  I had symptoms of both and the promethius test said it was UC.  Over time, I noticed they started writing my dx as Crohn's, but I don't know why the change...was never informed of any new information.  And I have a friend who had both...had UC and had the ostomy surgeries/reversals and then developed Crohn's.  So, I guess sometimes it's difficult to distinguish between the two and sometimes people end up with both.  Hopefully the MRI will be more conclusive for you.  

Crohn's Disease with Arthritis, Non-Erosive Reflux Disease, Gastritis, Hashimoto's Thyroiditis, Endometriosis, Depression/Anxiety 
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