Not sure what is wrong?

[Ihurt]

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....

 

[David]

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.

 

[Ihurt]

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.

 

[David]

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 [wiki]Mastocytic Enterocolitis[/wiki]. 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.

 

[Ihurt]

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 [wiki]Mastocytic Enterocolitis[/wiki]. 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.

 

[Ihurt]

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..