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Mrs Ouch
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/25/2010 4:03 AM (GMT -7)   
Hi all,

New here. I hope it's ok for me to post as I don't actually have a CD diagnosis but I've been experiencing IBD like symptoms for a while and I'm at a loss at what to do

A brief history: In 2005 I started having a few problems with vomitting, abdominal discomfort and loose stools. After a few blood tests it was decided that I had IBS and that I should not have any more invasive tests as it may make it worse. The symptoms continued on and off for a few years. about 2 years ago I developed a very specific pain in my stomach, to the right of my belly button. I was concerned that this may not just be IBS as it was in such a specific place. The pain would come and go but was significant. My doctor referred me for an ultrasound to check my gallbladder and everything appeared fine. When I pointed to where my pain was the ultrasound guy said that this was my bowels. He said the ultrasound would not show up any problems in my bowel but it was most likely I had IBS and that he also suggested i did not have a colonoscopy as it may make IBS worse.

Last summer I was due to get married and the pain was getting continually worse and I had vomitting and diahrrea daily. If I ate more than a small amount I would vomit after an hour or two. My doctor said the IBS was worsening due to stress and placed me on anti-depressants and beta blockers. The wedding (during which i spent most of the day hunched over and running off to puke) came and went and the symptoms have only got worse. I now struggle to do anything but lie on the sofa with a hot water bottle as standing or walking seems to make the pain worse. I don't think anyone around me appreciates how bad the pain is. People probably wonder why I have a constant look of concentration on my face - it's because i'm focussing on not being sick and getting through the pain.

Good news though - My GP has finally referred me for more investigations. I had an upper endoscopy which showed no problems and next week I have an appointment at our local colo-rectal department.

My question is - what should I be asking at the appointment? Should I be requesting a colonoscopy and/or anything else? I'm thinnkig of writing a list of symptoms I have so I don't forget to tell them anything. I've seen several GPs that have said I have IBS so I guess I'm just a bit worried I'll just get fobbed off again. I've tried everything I can think of to help IBS with no success (probiotics, meditating, yoga, digestive enzymes, diet, etc) and I'm sure it is something else.

Thanks for reading :-)

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 2/25/2010 7:03 AM (GMT -7)   
Hello and welcome. I'll bet your new GI doc will do a colonoscopy and blood work first thing. If that shows nothing, and he is a good doc he may want to do a camera pill. Best advise I can give though is get a notebook and document test, test dates, meds prescribed, effects and side effects of those meds and dates tried. Sometimes it takes a while to find out whats wrong and the doc may do what they call a shot gun approach . They take their best guess as to whats wrong a shoot you with meds that should help. If they work , Ta Dahhhh. But having notes later on will help because you wont recall and docs dont always have notes when they see you so they will ask have you ever tried this med or had this test. Also you may want to start a food diary . Keep track of what you eat and how it agrees with you. Everyone is different . Good luck and again welcome to the site...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/25/2010 7:14 AM (GMT -7)   
I think Sniper is right on, especially with the pill camera. Unfortanately a regular EGD only gets the first 3 feet of intestine and you might need to see the 18 feet of small intestine between that and what the colonscopy shows. I would suggest a patency capsule just to make sure the pill camera passes.
There is also a promethous blood test, but I have never had it 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…


Mrs Ouch
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/25/2010 9:06 AM (GMT -7)   
Thanks for the advice and welcome Sniper and MMMNAVY - much appreciated :-)

I guess the hospital will be a bit more clued up than my usual GP on these matters but I plan to go in with as much information as possible. I'm definitely going to write everything down from now on as it's hard to remember sometimes. I suppose I should mention every little thing that might be relevant (eg I had low red blood cell count and night sweats which the doctor dismissed).

Thank you again!

Satieheart26
New Member


Date Joined Feb 2010
Total Posts : 8
   Posted 2/25/2010 9:28 PM (GMT -7)   
I had Prometheus blood test and colonoscopy for diagnosis..  Maybe request both.  Both came back positive for me so I had no doubts.  Hope this helps!

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 2/25/2010 9:45 PM (GMT -7)   
Might want to ask for a CT enterography as well, it's like a more precise CT scan and it is extremely precise for Crohn's disease. It has been the best test that I've done so far, also very easy which is nice. Good luck!

Mrs Ouch
New Member


Date Joined Feb 2010
Total Posts : 4
   Posted 2/26/2010 3:45 AM (GMT -7)   
Thanks for the suggestions guys. Folk are very friendly and helpful round here!

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/27/2010 12:05 AM (GMT -7)   
Mrs Ouch here's a great web page from John Hopkins that someone recommended to me I found it very helpful Rob
http://www.hopkins-gi.org/GDL_Disease.aspx?CurrentUDV=31&GDL_Cat_id=AF793A59-B736-42CB-9E1F-E79D2B9FC358&GDL_Disease_id=291F2209-F8A9-4011-8094-11EC9BF3100E
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.

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