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Crohn's Disease Forum » Your Story » Not sure what is wrong?


03-16-2012, 03:28 PM   #1
Ihurt
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Not sure what is wrong?

Hi everyone.

I am a new member on here. I have been sick with alot of different issues for the last 9 years. I have fibromyalgia, interstitial cystitis, motility issues of the gut, possible autoimmune issues, IBS). I have always had upper gut issues that started about 8 years ago. My symptoms were pain and bloating after eating only very little. I had numerous upper endoscopies which were normal. I was told I had a neuropathic dysmotility of the small intestines. I then later went on a gluten free diet and that helped me immensely. Anyhow, last year my husband brought me home the stomach flu ( he is a teacher). Well ever since then I have had on and off intestinal pain and tenderness and cramping. Well for the last three weeks I have been in misery. I had one episode of diareha about a week ago( I had my period at the time so not sure if that made things worse or not). Otherwise my symptoms are constant pain, tenderness, crampiness, bloating, and a feeling like I always have to go( even though I do not actually go). I usually have one BM a day and it is usually soft or formed normal. But my intestines always feel so much more worse after I go. Like I said, I have the pain, crampiness and bloating ALL day, especially worse after I eat. My Gastro doc told me awhile back that I have IBS. I just cannot believe IBS can cause this kind of pain ALL the time. Also my stool I notice had whitish, yellow puss or mucus in it. My regular doctor had me do this stool sample thing so I just sent it to the lab today and will get the results sometime next week hopefully.

I also have been on a low dose antibitoic( keflex) for over three years to prevent the UTIs I was getting due to the Interstiatial cystitis. I also take a ton of probitoics daily. I just wonder if by taking the high doses of probitoics that this could be masking things( like possible halting diareha). I am so worried this may be chron's. How can you tell between crohn's and IBS. Thanks in advance for any info you may have to offer....
03-16-2012, 10:03 PM   #2
David
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Greetings and welcome to the forum. I'm so sorry you've been through so much I can understand how frustrating this must all be. *hugs* to you. A few things:

1. Those with interstitial cystitis are up to 33 times more likely to have inflammatory bowel disease than the general population.

2. Have you had a colonoscopy, CT scan of the abdominal region, or small bowel follow through?

3. It's often difficult to differentiate between Crohn's Disease and IBS without plenty of testing. I personally feel many with IBS actually have some form of inflammatory bowel disease and not enough testing was done to determine as much.

4. Have you ever had your vitamin D levels tested?

All my best to you.
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03-17-2012, 09:41 AM   #3
Ihurt
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Hi David,

Thanks for the reply. I agree, people who have one inflammatory disease usually are at risk for other issues. I have been sick for over 9 years with all these issues. I had ALL sorts of tests when I first got sick (1 colonoscopy, 8 upper endoscopies, small bowel follow through, CT scans you name it!) That was all done probably 7 years ago. I was already diagnosed with a small bowel dysmotility back in 2004. My symptoms were severe bloating and feeling full after eating very little. Well since the medical profession was basically useless, I took matters in my own hands and just went on a gluten free diet and my upper gut got alot better. Well then I ended up with all these other issues that came about like the IC, fibro, possible connective tissue disease, etc...

I have not done a colonoscopy since 8 years ago. My gastro doc believes I likely have IBS, he said that people with interstitial cystitis usually have IBS, they go hand in hand. I am am very reserved when it comes to taking tests, I know that sometimes they are needed, but there are risks involved so I try to avoid tests unless they are absolutely nessasary. I have had so many xrays, CT scans that I will not get any done unless it is an emergency since the level of radiation is high with certain scans and I am already vunerable with my immune system, last thing I need is cancer!

Right now I am waiting for my stool sample test to come back and I guess I will go from there. My main symptoms are bloating, constant intestinal pain and crampiness and tenderness. My stools are formed, but have white mucus in them. I had my VitD levels tested about 4 years ago and I was like at a 9( I was not having any bowel issues at that time though), but ever since I have been taking 5000 IU of VitD3 daily and my levels are like at 78 now so I am good there. Not sure what is going on, but hope I can get it under control soon... Thanks again for the warm welcome!!!






Greetings and welcome to the forum. I'm so sorry you've been through so much I can understand how frustrating this must all be. *hugs* to you. A few things:

1. Those with interstitial cystitis are up to 33 times more likely to have inflammatory bowel disease than the general population.

2. Have you had a colonoscopy, CT scan of the abdominal region, or small bowel follow through?

3. It's often difficult to differentiate between Crohn's Disease and IBS without plenty of testing. I personally feel many with IBS actually have some form of inflammatory bowel disease and not enough testing was done to determine as much.

4. Have you ever had your vitamin D levels tested?

All my best to you.
03-17-2012, 10:10 AM   #4
David
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Thank you for the detailed reply, that helps a lot

I can understand your reservation about any tests that involve radiation, I'm the same way. I've had 5 CT Scans in the last 4 years and will not have another unless it is an absolute emergency.

I usually hold this back but I absolutely hate the IBS diagnosis. I'd be sitting here with an IBS diagnosis if I hadn't kept pushing. It used to be a diagnosis of exclusion but now, well, yeah... If you're not comfortable with what your GI is telling you, don't give up. If the roles were reversed I would:

1. Find a new GI and get a colonoscopy. Seven years is too long to go without one with your symptoms.

2. I'd demand that the biopsies taken during that colonoscopy were stained for mast cells to test for Mastocytic Enterocolitis. This is a newer form of IBD that most do not yet test for. Your symptoms fit.

3. I would ask for a hydrogen breath test to check for Small Intestine Bacterial Overgrowth. Your symptoms fit there as well, especially with the reduced motility.

I'm glad you've got your vitamin D levels up that high, good job

We're here for you. I hope you keep us updated.
03-17-2012, 01:39 PM   #5
Ihurt
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Thanks for the reply David, I appreciate it. I am going to check into it. I am waiting for the stool test results and then will see the gasrto doc and go from there. I guess one day at a time is all I can do, all anyone can really do when it comes to being sick... Thanks again..








Thank you for the detailed reply, that helps a lot

I can understand your reservation about any tests that involve radiation, I'm the same way. I've had 5 CT Scans in the last 4 years and will not have another unless it is an absolute emergency.

I usually hold this back but I absolutely hate the IBS diagnosis. I'd be sitting here with an IBS diagnosis if I hadn't kept pushing. It used to be a diagnosis of exclusion but now, well, yeah... If you're not comfortable with what your GI is telling you, don't give up. If the roles were reversed I would:

1. Find a new GI and get a colonoscopy. Seven years is too long to go without one with your symptoms.

2. I'd demand that the biopsies taken during that colonoscopy were stained for mast cells to test for Mastocytic Enterocolitis. This is a newer form of IBD that most do not yet test for. Your symptoms fit.

3. I would ask for a hydrogen breath test to check for Small Intestine Bacterial Overgrowth. Your symptoms fit there as well, especially with the reduced motility.

I'm glad you've got your vitamin D levels up that high, good job

We're here for you. I hope you keep us updated.
03-17-2012, 01:45 PM   #6
Ihurt
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Oh, I just searched that newer form of IBD that is related to the mast cells. Very interesting. I know that there are forms of Interstitial cystitis that are caused by mast cells as well. Mine however is not, they did a bladder biopsy on me a few years ago when all my bladder issues came about and it was negative for mast cells. I also am taking zyrtec daily so I would think that would help it I had problems with mast cells as they said that antihistimines would be the treatment for this type of IBD. It is good to know though, I mean at least I can bring it up to my gastro doctor... Thanks again for the info.









Thanks for the reply David, I appreciate it. I am going to check into it. I am waiting for the stool test results and then will see the gasrto doc and go from there. I guess one day at a time is all I can do, all anyone can really do when it comes to being sick... Thanks again..
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