Crohn's or not help please ...

[melissalwatson]

I have been struggling with stoamch issues cor close to 4 months now.. the first week it started with a stomach ache and a fever that only lasted about 24 hours ... however the stomach cramps and diarrhea continued and hasn't stopped .. i also sometimes just have a mucus come out.. or many little pieces ..some days are better than others but every day I have diarrhea some days I have cramps and pains and others I dont .. I saw my general physician and they did stool and blood samples all came back negative so I was referred out to a gasternologist .. befofe I could go I.had a bad day with aweFul pain I went to urgent care and blood work ordered to rule out infection and it did next I had a ct scan again nothing .. I went to specialists and a colonoscopy was ordered .. result was a polyp was removed minor hemroids slight inflammation in rectum and intestines.. so the nurse who called me told me blood results showed border line of Crohn's but biopsy negative ? What does that even mean ?? I have another appt next month but still daily diarrhea porridge like every am... and after I eat dinner my stomach gurggles for hours sometimes pain sometimes not ? I am so annoyed and want answers. . Do I have Crohn's? Do I need to change my diet ? Any advice or help

 

[CrohnsLifer]

I know it's frustrating not to mention painful - it took seven years from my first symptoms to a diagnosis. And even then it's not settled I had my diagnosis change and reversed again after 30 years.

Diet - I eat a lot of white rice (Japanese to be exact) with just a sprinkle of soy sauce or other condiment (not too much). It doesn't seem to hurt but it doesn't always work either.

Wish I could give you better news.

 

[LodgeLady]

I know it's frustrating not to mention painful - it took seven years from my first symptoms to a diagnosis. And even then it's not settled I had my diagnosis change and reversed again after 30 years.



Diet - I eat a lot of white rice (Japanese to be exact) with just a sprinkle of soy sauce or other condiment (not too much). It doesn't seem to hurt but it doesn't always work either.



Wish I could give you better news.

Yes my GI keeps going back and forth with my Crohn's diagnosis. It is a very long process. Unless you have overwhelming intestinal damage it can be very hard to find the problem area.

 

[SarahBear]

Sorry to hear what you're going through. It sounds very frustrating.

I suggest that you write down a list of questions and take it with you to your next appointment. It can be easy to forget some things when you get there, so a list really helps make sure you get the answers you need. Don't hesitate to ask as many questions as you need to so that you're confident you understand what's going on.

Have they mentioned doing any further testing? I would definitely push for more. A capsule endoscopy might be a good idea, so that they can see if anything is happening in your small intestine. Since your blood work is indicating Crohn's but the biopsy from your large intestine didn't, I would definitely want to see if there's any activity elsewhere in your digestive tract. Keep in mind that the blood test (it's called a Promethesus test) that indicates IBD isn't completely accurate - but incorrect results are generally false negatives, rather than positives. So, while the blood test can't be relied on as a diagnostic tool, the result definitely needs to be investigated.

Did they have an explanation for the inflammation they found? Do they think it's related to the hemorrhoids?

Have you noticed any blood in your stool? If so, is it bright red or dark?

I wouldn't suggest immediately changing your diet. Consider keeping a detailed food journal, and if you can pinpoint any specific foods or drinks causing you symptoms, remove them from your diet. If nothing in particular is causing you any problems, then there's little need to change things now. Do you currently avoid gluten for any reason?

Here's a few suggestions of questions you might want to ask:

1) Do you currently have a diagnosis for me? If not, what testing are we going to do to find a diagnosis?
2) Is there anything you can suggest to help reduce my symptoms?
3) What do you think is causing the inflammation in my colon?

I hope you find answers soon!

 

[Crohns08]

A lot of good advice is given. If your stomach is gurgling I would avoid high fatty foods, foods with high sugar content in them and fiber. That should help with the gurgling and reducing your pain some. There are many diets out there that you can look into but the SCD, Low Residue, and Paleo diets seem to be the most popular.

 

[UnXmas]

A lot of good advice is given. If your stomach is gurgling I would avoid high fatty foods, foods with high sugar content in them and fiber. That should help with the gurgling and reducing your pain some. There are many diets out there that you can look into but the SCD, Low Residue, and Paleo diets seem to be the most popular.

If you avoid fat, sugar and fibre, there won't be much left to eat.

 

[my little penguin]

Honestly
You need to wait to talk to the actual Gi
Do not change anything until then
We have found what the nurse says maybe very different from the Gi
Typically if it's a new dx or med change the Gi will actually talk to you either in person or on the phone .
It takes time - we had testing and visits for 8 months before Ds was dx .
But I would rather they be completely sure vs a maybe .