Colonoscopy results are in...

[xtine]

This is my 2nd colonoscopy in a year. the first biopsy was inconclusive for CD but it did show inflammation as a ulcer in my TI.

This second test was inconclusive of CD as well but now the inflammation is being termed as a polyp in my TI.

Anyone else have a polyp in the TI?? do you think it's the same issue as last year's test and the biopsy results are are just giving it a different name??

I should say that if I do have CD, then i'm not exhibiting the typical symptoms. i have eye pains, sinus pains, systemic inflammation that does seem to flare up however my major complaints are joint and bone pains. i have slow motility and prone to constipation never D. Maybe I should be looking into different possibilities??

I do question my CD diagnosis however my GI felt that this is what I have. I am currently treating my symptoms thru diet and yoga.. not on any medication yet.

Thanks in advance,
Christine

 

[suschex]

This is my 2nd colonoscopy in a year. the first biopsy was inconclusive for CD but it did show inflammation as a ulcer in my TI.

This second test was inconclusive of CD as well but now the inflammation is being termed as a polyp in my TI.

Anyone else have a polyp in the TI?? do you think it's the same issue as last year's test and the biopsy results are are just giving it a different name??

I should say that if I do have CD, then i'm not exhibiting the typical symptoms. i have eye pains, sinus pains, systemic inflammation that does seem to flare up however my major complaints are joint and bone pains. i have slow motility and prone to constipation never D. Maybe I should be looking into different possibilities??

I do question my CD diagnosis however my GI felt that this is what I have. I am currently treating my symptoms thru diet and yoga.. not on any medication yet.

Thanks in advance,
Christine

Request a Calprotectin Test...it is a stool sample test

 

[xtine]

i will ask about it thanks. do u think that will give the dr. more info compared to just doing a colonoscopy?

 

[Ihurt]

I am sorry you are dealing with all this. Have you ever seen a Rheumatologist? I would likely maybe see if you can see one, they may be able to see if your issues with the eye pain, and systemic inflammation is caused by maybe something else. I honestly think more things than just crohns can cause issues in the gut and even inflammation. The whole inconclusive diagnosis is a red flag to me. It means they really do not know what is going on, they are just guessing. Have you had any other tests like on the small intestines? Like MRE or MRI?

 

[CrohnsChicago]

what other tests have you had done to determine if you have IBD?

 

[Chickadee]

I had a colonoscopy last week, and the doctor removed what he believes to be an inflammatory polyp also. I'm not sure where it was. (He may have told me, but I was in a Propofol haze.) I'm still waiting on pathology to confirm the nature of the polyp and for info on other biopsies. I don't have a Crohn's diagnosis at the present time, so I am not sure what to make of the inflammatory polyp, though I do have typical Crohn's symptoms.

 

[xtine]

I have a a good run of blood tests and an MRI of my SI joints. I did see a rheumy and they thought that i either have arthritis due to crohn's, or alkalizing spondylosis or some other auto-immune disease either on top of the crohn's or in place of what they think is crohn's. so- really no real answers. all my blood tests were normal however i do fluctuate between elevated c-reactive protein levels to normal. my MRI results did show inflammation in the SI joints.

I am being sent to an eye dr. for my eye pain and from that, they might refer me to an ENT for my sinus pain. So far, all i can figure is that this is systemic and not really 'settling' in one place. I am unsure if it's autoimmune at this point too.

I saw my GI today. He says he's still thinking the CD diagnosis is 'reasonable' but he doesn't want to medicate me since I'm not crazy about taking anything and that i am managing ok with my symptoms. The biopsies came back 'unremarkable'.

So- what am i to do? i want to figure out what is going on.. so i can try my best to manage this. Am I just suppose to wait around until i get more symptomatic? and if i do get worse.. what if it's too late??

i'm so frustrated. I really don't know how to manage my dealings with doctors.. or informed enough to be more aggressive and start demanding things.

 

[araceli]

You may want to read about Arthropathy associated with IBD. or SpA.

 

[CrohnsChicago]

I really hope that you can figure out what is going on. It's very good though that you are practicing a healthy lifestyle in the meantime to avoid further complicating things. I need to learn yoga myself. I just keep putting it off for some reason.

I sometimes get frustrated with doctors as well when I don't know what is wrong with me despite all the testing and getting little to no answers.

It really does sound like an autoimmune situation, however exactly WHAT autoimmune situation you have is the tricky part. Also figuring it out is annoying as heck because sometimes it takes so long. In my case it took a few years to figure out what was wrong with me. All tests came back clear. It wasn't until later that I developed a few key symptoms that allowed docs to clearly identify what they needed to test and get a diagnosis. It was exhausting. When I finally got a diagnosis initially I was scared, but more relieved that I finally had an answer. I hope the same for you as well and sooner rather than later :hug:

The best way to communicate with your doctors is to ask as many tests as possible. And if you don't understand something they are saying, tell them you don't understand and ask them to explain some more.

It would also be to your benefit to get copies of your medical records from your doctors. That way if for some reason you do not like the doc you have, you can find a new doc/get a second opinion and very easily and quickly get them up to date on what you have going on and avoid any delays with regards to that and extra frustrations having to explain to your new doctors everything that has already been tried/done.

I have a a good run of blood tests and an MRI of my SI joints. I did see a rheumy and they thought that i either have arthritis due to crohn's, or alkalizing spondylosis or some other auto-immune disease either on top of the crohn's or in place of what they think is crohn's. so- really no real answers. all my blood tests were normal however i do fluctuate between elevated c-reactive protein levels to normal. my MRI results did show inflammation in the SI joints.

I am being sent to an eye dr. for my eye pain and from that, they might refer me to an ENT for my sinus pain. So far, all i can figure is that this is systemic and not really 'settling' in one place. I am unsure if it's autoimmune at this point too.

I saw my GI today. He says he's still thinking the CD diagnosis is 'reasonable' but he doesn't want to medicate me since I'm not crazy about taking anything and that i am managing ok with my symptoms. The biopsies came back 'unremarkable'.

So- what am i to do? i want to figure out what is going on.. so i can try my best to manage this. Am I just suppose to wait around until i get more symptomatic? and if i do get worse.. what if it's too late??

i'm so frustrated. I really don't know how to manage my dealings with doctors.. or informed enough to be more aggressive and start demanding things.

 

[Clash]

xtine, has your GI discussed EIMs(extra intestinal manifestations) of Crohn's disease? Some EIMs include different forms of joint pain(or arthralgias), eye inflammation such as uveitis, episcleritis etc. These EIMs as well as other can run concurrently with flares of your CD or independently of a CD flare.

If you use the forum search bar and key word EIMs it should bring up informational threads. My son has joint pain that affects his back, knees and sometimes feet and hands, he also has episcleritis as an EIM. His CD is located in his TI and he does have inflammatory polyps in that area.

I hope you find some answers soon.

 

[Ihurt]

Xtine, wow, you sound a lot like me. I have all sorts of issues also going on. I have had elevated CRP and sed rate levels on and off for the last 10 years! I even had a positive ANA at one point, but it went down as well. I have inflammation all throughout my body too. I have inflammation in my bladder( they say it is IC bladder), I have awful muscle pains at times, joint pains, severe fatigue etc,, chronic infections( especially of the bladder and now even vaginal infections).

I also have the intestinal issues as well. I had a colonoscopy done in April which showed nothing, biopsies were normal as well. I also had an MRE of the small bowel which did not show anything either last year. So I get where you are coming from. I was told by my gastro that the doctors really do not have much understanding when it comes to these complex immune disorders. There are Lot of things I am understanding that can mimic Crohn's and other diseases. I know lyme disease can give symptoms of Crohn's disease and all the other symptoms you have. Have you ever been checked for lyme disease? I was told at one point that I was thought to have lyme disease. I do not remember being bit by a tic though and I live in Chicago in the city, but I guess you can still get it here, it is just not as common. I have seen a few rheumatologists as well. All they ever do is tell me I have an undifferentiated connective tissue disease and try and push high doses of NSAIDS on me which I cannot take. That and plaquenil. I did not want to do the plaquenil as it is known to cause issues with the eyes.

I feel for you, I really do. It sucks not knowing what is wrong. I can understand why your GI does not want to give you meds unless he knows for sure as they have a whole slew of potentially dangerous side effects. But it sucks not knowing, I get that. Is you doctor giving you anything to try and help with the pain at least and the symptoms?