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Do you think I have IBD? Diagnosed with IBS, but don't believe it?


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#1 Claire Elise(:

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Posted 28 May 2012 - 05:58 PM

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This is going to be long, sorry. hah

Hey everyone! I am 15.
Well, I am new to this site and decided that since I haven't been feeling well at all I mine as well post something and hope someone can give me at least a little bit of help. :) Anyways, I have been having severe lower right abdominal pain for about 5ish months now. I was sent for a CT Scan with contrast (showed inflammation of the bowel, so you'd assume IBD not IBS right? Well, wrong.) I have learned that IBS does not cause inflammation so I have no idea what that was from :s Before all this I had an abdominal ultrasound and everything was normal (didn't include pelvis). I had that because I had a gnawing pain in my upper center stomach so we assumed ulcer, but did the ultrasound to check my organs because my family has a history of gallbladder/kidney issues. (turns out I don't have an ulcer actually.)

Well, after that I was sent for blood work and stool samples. Well, everything but one thing came back normal. The thing that came back high was my fecal calprotein, it came back at about 150ish. This is high when people have IBD, but my doctor reassured me it was okay considering she saw people with levels of about 800 with IBD. Well, I was then sent for an upper GI Study and lower GI study. These surprisingly came back normal. Time to go back to the doctor. I was still having severe pain, it felt like someone was stabbing me with a knife when I breathed and no one could touch that area. I still today have that severe pain (there are times I am doubled over and or up all night in pain)


Well, all my symptoms were lining up for Crohn's Disease. My doctor decided it was time for a colonoscopy and an endoscopy. At 15, these were not things you'd want to hear. Haha.

Day of my scope, I was thankfully given general anesthesia. My doctor said that I have an extremely long colon and that there was mucus in my ilium. She asked how long ago I had my upper Gi study (with barium). My mom said about 2 weeks ago, (really 3) the lady then said that it is highly unlikely, but it is possibly that is was left over barium.

Turns out that the biopsies were all normal. Weird huh? (I do go to a nutritionist who doesn't believe I have IBS, she said often kids come to her and the have false negatives and then they find out it is IBD. That is what she thinks I have as well as I)

Well, the day I had my scopes I started feeling 10 times worse than before. That was the day I started having severe diarrhea (sorry to be graphic). Well, I still to this day have it (it has been about 5 weeks.) I am currently taking Bentyl up 3 times a day, Nexium 40 MG delayed release capsules one a day (use to be twice, but we switched it to once), Florastor (probiotic) twice a day, Calcium supplement, and Lactaid pills.

Anyone else ever experience something like this?

We think it may be an infection such as C. Diff because recently I have been having diarrhea (ever since my scopes that happened..., but who knows. I have to wait for the stool test and then the results.
A list of my COMPLETE symptoms list is:
inflammation in my bowel,
mucus in my ilium,
stabbing pain in the lower right hand quadrant of my stomach,
now diarrhea (we think I now have an infection from my antibiotic),
fever everyday,
nausea,
headaches, (have had for the past 4.5 years though-did the whole MRI and Ct Scan/neurologist thing.),
Tenderness in Stomach,
Stomach Noises - It's not your average run of the mill I'm hungry feed me stomach noises it's more like I don't like whatever this is that's bothering me.,
Loud Bowel Noises,
Mucus in stool,
decrease in appetite,
fatigue,
looking really pale,
Occasional blood in stool,
weight loss then weight gain,
shakiness,
sore eyes,
Muscle Soreness,
Pinching feeling
sometimes cramping,
mini blackouts,
sometimes unclear thinking and confusion
I don't believe someone can consider these things just "IBS" something else is clearly going on in my body.


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#2 Claire Elise(:

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Posted 30 May 2012 - 10:24 PM

...Anyone?

#3 CJ78

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Posted 02 June 2012 - 02:02 AM

Hi Claire.

Nobody on here could really diagnose you of IBD, and the GP's sound like they are doing as much as possible.

Colonscopys are a very good resource for the medical world as it allows them to physically see what is going on (where scans etc can miss things).

The list of symptoms given is quite comprehensive, so I would guess that this number if given to your GP would mean that it could be many things.

What it sounds like the GP is doing is trying to eliminate what it isn't whilst trying to diagnose what it is.

I understand your frustration. I do.
I was diagnosed with IBS, but have IBD.
HOWEVER, I was diagnosed with IBD following my colonscopy as I had inflammation and ulcer's.
If they didn't see the symptoms of IBD during colonscopy, I would presume they would diagnose as such. If they had concerns it was, or doubts, then they would have taken biopsies. If they didn't, again, I presume they were satisfied with their diagnosis.
The difference with me however is that I was paranoid about having something else, not because I believed it was IBD. That was the only reason for my colonscopy.

When a GP pulls out the stops, there gets to a point where you will have to start going with their diagnosis (which I have now done) but continue to question any doubts or worries you have.
Sometimes the explanations given aren't as comprehensive as the patient needs or would like, but you will need to raise these with your GP.

I know its not an answer, but all you can do is push your GP for better explanations, explain your frustrations and work towards a positive diagnosis...unfortunately only your GP can do that.

#4 Tucker

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Posted 03 June 2012 - 01:50 PM

This is going to be long, sorry. hah

Hey everyone! I am 15.
Well, I am new to this site and decided that since I haven't been feeling well at all I mine as well post something and hope someone can give me at least a little bit of help. :) Anyways, I have been having severe lower right abdominal pain for about 5ish months now. I was sent for a CT Scan with contrast (showed inflammation of the bowel, so you'd assume IBD not IBS right? Well, wrong.) I have learned that IBS does not cause inflammation so I have no idea what that was from :s Before all this I had an abdominal ultrasound and everything was normal (didn't include pelvis). I had that because I had a gnawing pain in my upper center stomach so we assumed ulcer, but did the ultrasound to check my organs because my family has a history of gallbladder/kidney issues. (turns out I don't have an ulcer actually.)

Well, after that I was sent for blood work and stool samples. Well, everything but one thing came back normal. The thing that came back high was my fecal calprotein, it came back at about 150ish. This is high when people have IBD, but my doctor reassured me it was okay considering she saw people with levels of about 800 with IBD. Well, I was then sent for an upper GI Study and lower GI study. These surprisingly came back normal. Time to go back to the doctor. I was still having severe pain, it felt like someone was stabbing me with a knife when I breathed and no one could touch that area. I still today have that severe pain (there are times I am doubled over and or up all night in pain)


Well, all my symptoms were lining up for Crohn's Disease. My doctor decided it was time for a colonoscopy and an endoscopy. At 15, these were not things you'd want to hear. Haha.

Day of my scope, I was thankfully given general anesthesia. My doctor said that I have an extremely long colon and that there was mucus in my ilium. She asked how long ago I had my upper Gi study (with barium). My mom said about 2 weeks ago, (really 3) the lady then said that it is highly unlikely, but it is possibly that is was left over barium.

Turns out that the biopsies were all normal. Weird huh? (I do go to a nutritionist who doesn't believe I have IBS, she said often kids come to her and the have false negatives and then they find out it is IBD. That is what she thinks I have as well as I)

Well, the day I had my scopes I started feeling 10 times worse than before. That was the day I started having severe diarrhea (sorry to be graphic). Well, I still to this day have it (it has been about 5 weeks.) I am currently taking Bentyl up 3 times a day, Nexium 40 MG delayed release capsules one a day (use to be twice, but we switched it to once), Florastor (probiotic) twice a day, Calcium supplement, and Lactaid pills.

Anyone else ever experience something like this?

We think it may be an infection such as C. Diff because recently I have been having diarrhea (ever since my scopes that happened..., but who knows. I have to wait for the stool test and then the results.
A list of my COMPLETE symptoms list is:
inflammation in my bowel,
mucus in my ilium,
stabbing pain in the lower right hand quadrant of my stomach,
now diarrhea (we think I now have an infection from my antibiotic),
fever everyday,
nausea,
headaches, (have had for the past 4.5 years though-did the whole MRI and Ct Scan/neurologist thing.),
Tenderness in Stomach,
Stomach Noises - It's not your average run of the mill I'm hungry feed me stomach noises it's more like I don't like whatever this is that's bothering me.,
Loud Bowel Noises,
Mucus in stool,
decrease in appetite,
fatigue,
looking really pale,
Occasional blood in stool,
weight loss then weight gain,
shakiness,
sore eyes,
Muscle Soreness,
Pinching feeling
sometimes cramping,
mini blackouts,
sometimes unclear thinking and confusion
I don't believe someone can consider these things just "IBS" something else is clearly going on in my body.



#5 Tucker

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Posted 03 June 2012 - 01:55 PM

I am not a doctor. I had UC from age 17 until recently. I had several of the symptoms you list, but thankfully not all. If you have Cdiff, there is a new therapy that cures about 90% of cases It also has been quite successful in treating UC. Fecal Transplant therapy appears to induced complete remission of my UC. See my post under the topic Fecal Transplant. Good Luck. Tucker

#6 Claire Elise(:

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Posted 04 June 2012 - 12:55 PM

Hi Claire.

Nobody on here could really diagnose you of IBD, and the GP's sound like they are doing as much as possible.

Colonscopys are a very good resource for the medical world as it allows them to physically see what is going on (where scans etc can miss things).

The list of symptoms given is quite comprehensive, so I would guess that this number if given to your GP would mean that it could be many things.

What it sounds like the GP is doing is trying to eliminate what it isn't whilst trying to diagnose what it is.

I understand your frustration. I do.
I was diagnosed with IBS, but have IBD.
HOWEVER, I was diagnosed with IBD following my colonscopy as I had inflammation and ulcer's.
If they didn't see the symptoms of IBD during colonscopy, I would presume they would diagnose as such. If they had concerns it was, or doubts, then they would have taken biopsies. If they didn't, again, I presume they were satisfied with their diagnosis.
The difference with me however is that I was paranoid about having something else, not because I believed it was IBD. That was the only reason for my colonscopy.

When a GP pulls out the stops, there gets to a point where you will have to start going with their diagnosis (which I have now done) but continue to question any doubts or worries you have.
Sometimes the explanations given aren't as comprehensive as the patient needs or would like, but you will need to raise these with your GP.

I know its not an answer, but all you can do is push your GP for better explanations, explain your frustrations and work towards a positive diagnosis...unfortunately only your GP can do that.


Hello,
Well, when they did the colonoscopy, they learned I had an extremely long colon, a little red, but not bad, still a bit inflammation, they took a bajailion biopsies haha. I also had excessive and not good mucus in spots.
thank you for answering..getting so frustrated..especially now, because my GI won't give me a school note so I may have to repeat the year! :S

#7 Claire Elise(:

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Posted 04 June 2012 - 01:00 PM

I am not a doctor. I had UC from age 17 until recently. I had several of the symptoms you list, but thankfully not all. If you have Cdiff, there is a new therapy that cures about 90% of cases It also has been quite successful in treating UC. Fecal Transplant therapy appears to induced complete remission of my UC. See my post under the topic Fecal Transplant. Good Luck. Tucker


Hello,
Thank you so much.

#8 Frances

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Posted 08 June 2012 - 01:12 AM

I can't help you much either as I have not officially been diagnosed. For me, the bleeding was a clear indicator and one doctor saw colitis (inflammed, red, bleeding) via a sigmoidoscopy.

I suggest getting a second opinion. Although I can't say whether your symptoms are that of IBD (many conditions mimic another) it does not sound like traditional IBS. The diarrhea is common with ibs but there shouldn't be inflammation. the biopsy should have shown results of ibd if it was present so i'm not convinced they got it wrong (though I'm sure it's possible) but perhaps something else is happening? Don't be afraid to see a different doctor. Worse that could happen is they confirm what the other doctor said but at least you'd have asked.

good luck
In April 2012, Doctors said it looks like IBD. Tests are yet to be done to confirm and determine which IBD it is.

#9 Claire Elise(:

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Posted 13 June 2012 - 03:10 PM

I can't help you much either as I have not officially been diagnosed. For me, the bleeding was a clear indicator and one doctor saw colitis (inflammed, red, bleeding) via a sigmoidoscopy.

I suggest getting a second opinion. Although I can't say whether your symptoms are that of IBD (many conditions mimic another) it does not sound like traditional IBS. The diarrhea is common with ibs but there shouldn't be inflammation. the biopsy should have shown results of ibd if it was present so i'm not convinced they got it wrong (though I'm sure it's possible) but perhaps something else is happening? Don't be afraid to see a different doctor. Worse that could happen is they confirm what the other doctor said but at least you'd have asked.

good luck


I am going to another doctor, I still have the daily pain. My one doctor said that the IBS is intermittent pain, everyone thinks it's IBD, and the pathology was a false negative...we'll see where this goes I guess. Haha. Thank you!(:





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