Crohn's Disease Forum » Support Forum » Undiagnosed Club » FAQs for the Undiagnosed

01-07-2015, 09:29 PM   #31
Join Date: Sep 2014
Location: london, United Kingdom

My Support Groups:
The constant distention and feeling of rigidness and breathing discomfort are my worst symptoms I never quite believed the ibs diagnosis, I to believe that is something doc's use when they don't have much idea of what could really be going on and can't be assed exploring other possibilities.
01-08-2015, 11:08 AM   #32
Join Date: Oct 2012

My Support Groups:
I am looking for some help on whether or not I sure further pursue a diagnosis.

I have suffered from what I call "tummy issues" for years. I am 19 years old and for as long as I can remember I have had them. I've had urgency, diarrhea, pain after eating, cramping for most of my life on and off which I was told to just deal with because a parent has had self diagnosed IBS for most of his adult life.

In highschool my "issues" worsened and I begin having more and more pain along with vomiting and blood in my stool and when I wiped and continued diarrhea. I ran cross country and distance and it begin to interfere with my competitions. I would vomit or come close to it while running and had diarrhea after. I went to my pediatrician at 17 for it and was only asked if I was pregnant and was brushed off as anxiety.

Finally I pursued a GI doc at 18 after talking with a friend who had been diagnosed with Crohn's two years previous. I went to her doctor to find some answers. The doctor asked if I had mouth sores and I never considered that a symptom but I had mouth sores all of my life and she said that it is related to IBDs. On the first visit I was given a chart to track my symptoms along with a anti-diuretic. Off to college I went with my chart.

I returned over the holiday break with news that I still have blood, diarrhea, pain, nausea and vomiting, cramping and continued mouth sores. So my GI scheduled an upper endoscopy and colonoscopy and biopsy of a mouth sore. The results came back as not Crohn's but inflammation of my small bowel. I am still waiting the results of the mouth biopsy. I was told it was IBS because it wasn't crohn's and I was told to try therapy, probiotics, and a FODmap diet.

I have read many places that it is not IBS if you have blood in your stool or have been awoken by pain and diarrhea in the night, which I experience both too much to be ignored.

I know this is long but I am looking for help to see if I should pursue more tests (they're costly) or accept my IBS diagnoses and try the diets.
You're right that bleeding means you can't meet the criteria for an IBS diagnosis, and waking in the night is also a sign something more than IBS is going on. IBS also can't cause inflammation, although if the inflammation they found in your small bowel is very mild, it may be incidental (i.e. unlikely to cause symptoms, no threat to your health), so your doctors aren't necessarily wrong to dismiss it, but it may be worth asking for more information about how much inflammation there actually is.

Upper endoscopy and colonoscopy do give quite a thorough assessment of your digestive system. However, with your symptoms it does sound like they've missed something - the cause of the bleeding in particular. Have you had any stool tests done? You provide a stool sample and they can test it to see if it contains blood (sometimes even if there is not enough blood in the sample for it to be visible to the naked eye). It's a non-invasive test. I don't know how much it would cost as I'm in the UK, but I would think it would be nowhere near the cost of scopes. Have you had routine blood tests done? (I imagine your have, as they're usually done before you get to tests like endoscopies.) Blood tests can show signs of inflammation, vitamin deficiencies, etc. They don't diagnose specific illnesses usually, but they do provide a general picture of your state of health, can help convince doubtful doctors that you need further investigation, and may suggest to your doctors how to proceed with further testing if necessary.

If you go back to your doctor, I would emphasise the bleeding in particular, because they should not put that down to IBS.

Also have you heard of "runners' diarrhoea"? It doesn't explain all your symptoms (it's not a well specified condition, as the mechanisms for it are very unclear) but may have worsened them when you were running.
01-08-2015, 11:36 AM   #33
Join Date: Jan 2015
Location: United Kingdom
Im still undiagnosed well truthfully the doctors at hospital said I had crohn's then I had an outpatient app and the consultant said he couldn't be sure and didnt want to label as having crohn's. I had already started prednisalone and completed the course. Ever since ive had pain almost every day ranging from mild to severe. I never have a solid week where I dont have an issue of some sort ie with gut or joint pain or my eyes which were so sore it would wake me up. Its so frustrating.
06-28-2015, 10:41 AM   #34
Join Date: May 2015
Location: Washington, Utah
Hang in pcp did nothing for my daughter even though she was wasting away a 79 pounds...once i took matters into my own hands and took her to my gi he formally diagnoised her.
Also there is a new blood test that just came out but insurance may not pay for it it the dr does not write the cause/reason for test right.
I myself have lived with it for years...and now that my bladder is bleeding and i have been diagnoised with ic i am undergoing treatments for this as well.
You know your body better than anyone if you can not communicate seek another dr..or get an advocate. Most large practices/hospital groups have adovacates free of charge.

Also keep in mind my blood tests always came out normal with the exception of vit b 12...once on weekly shots no sign of improvement.
It is very hard but once you hvae to start eliminating foods and you have no allergies or infections that is a sign something is wrong besides "depression"...
Dr's will state possible ibs/cahnge diet etc but if you are young they don't like to order colon & endo because of the risks.
Unless of course you are bleeding and losing lots of weight.
Best wishes for a dr who understands your needs

Crohn's Disease Forum » Support Forum » Undiagnosed Club » FAQs for the Undiagnosed
Thread Tools

All times are GMT -5. The time now is 03:16 PM.
Copyright 2006-2017