Orange mucus

[horseluvnhonee]

Hi all...

Well..I had my CT enterography yesterday...guess what..it was completely normal. Not that I wanted it to be bad...but I am so desperate for an answer right now. I also got a letter regarding my labwork. My CRP was elevated at 8.6 but I guess it has to be over 10 to show "acute inflammation"...she did write that a slightly elevated results means that "my blood pressure and cholesterol may not be completely under control". So basically I have inflammation but not high enough to be crohn's inflammation but does mean I'm at risk for a heart attack...nice..lol!!!!

Ok..now to reverse my question from the other day.....have any of you had negative CT, CT enterography results and still have active disease going on?? I know my friend has bad UC and her CT didn't show anything...but by the time they did (the third) scope..her inflammation was so bad they stopped right away out of fear of going right thru her colon.

I sound like such a loser..I should be happy the CT didn't show anything.... I'm just so sick of feeling sick and now I"m getting sick of doing all this costly testing that isn't telling me anything.

I'm tapering off the prednisone and have noticed an increase in my joint pain, fevers,etc. My bowel sx always seem to be there though....the right sided pain...most the time it's just an annoying ache but it does get a little more severe from time to time. I'm also still having the mucus..which has been more "orange-ish" in color lately????? Like the GI said though...my pain could be from anything...including adhesions,etc from my endometriosis and previous laparoscopies. Doesn't really explain the mucus, occas blood,etc.

Maybe I'm just a hypochondriac with weird poop? I was really hoping there would be an end to searching for a diagnosis..I've been thru the gamet of testing for RA, lupus,etc...now for IBD....I really am starting to feel like a hypochondriac.....oh wait...an overweight, unhealthy, high cardiac risk hypochondriac..lol. I've been trying to watch my diet and exercise when I can....most of the time I just feel too lousy to though.

Ok..sorry to whine....it's just starting to be a long road with no end. Thanks for listening guys!!!!!

Olivia

 

[Emkat8]

Olivia,
I'm so sorry to hear what you have been going through I know exactly what you are going through. I'm currently awaiting a diagnosis myself and it seems like the doctors really don't believe how hard it is to deal with my stomach always acting up!!! I've been waiting about two weeks now just to get a referal to see another doctor who can do a colonoscopy, I call the office just about everyday and complain that I need my referral already, and yet they just say we're working on it. I finally told the receptionist the other day, look ma'am, I know this isn't your fault neccesarily but can you please help me because I poop like seven times a day!!! I NEED YOUR HELP! Anyhow, I'm starting a rant of my own- I apologize!

But I know what you mean about the costs associated with all these tests. Its frustrating to have to spend your hard earned money on something that gives you absolutely NO valuable information that will help you feel better. That sucks I can also relate to your feeling lousy and not wanting to eat right and exercise. Since I have started feeling bad in Decemeber I just don't have the energy to do anything, including eat right. I have put on around five pounds. My stomach feels so bad most of the time that I just try to eat something to make me feel better. I Know eating junk is not going to help me in the long run, but its so hard to feel sick literally all the time, that I just don't care right now. I feel like I need to find out what's wrong with my body and try to fix it before even thinking about getting to a healthy weight. I have gotten so tired too, so my past habits of running with my hubby after work has gone out the window...Now I come home and take naps or watch tv in my comfy pants so they don't press too hard on my stomach, lol. Its so hard because in addition to feeling like crap, now I don't really feel good about my appearance either So you're definitely not the only one going through this. You are not the crazy hypochondriac you think you are...Or maybe I'm just one too Lol

Just hang in there, and hopefully things will get better soon. I'm so sorry for what you're going through and maybe the docs will find out what is going on soon enough. God bless and keep your chin up!

 

[Pirate]

Crohns is a wierd disease in the fact that you can have pain and no sign of inflamation from a scope. There are places that cannot be seen with the scope. Also you really have to catch it when it is active because there are times that you are having symptoms and by the time they get into check things out its gone. This happened to me before I was diagnosed. Its really a problem if your bleeding cause it can stop before you even see the blood.

Hang in there, it may take a few more tests to identify it.

 

[horseluvnhonee]

Thank you so much you guys!!!! Emkat...I'm so sorry you are going thru this too. The thing that always make me doubt myself that it really could be crohn's is the diarrhea thing...I don't have it...I usually have constipation....although my cousin had this as her main sx and a few folks here have mentioned this as well. Yeah..I felt like maybe we were finally narrowing in on something....as far as a diagnosis goes.

Pirate....I have heard that as well about having to catch it at the right time. It took my friend 5 years and 3 scopes to find her UC.

I guess I'll just keep trudging along...I do have a f/u appt on the 23rd...we are going to talk about another scope at that appt. I obviously don't want to go thru another one but my first one was incomplete and she said it really does need to be re-checked. She said she has her patients do more of an extended prep....hopefully this will help me to be cleaned out this time.

Ok...thanks again for the support...I really appreciate it!!!

 

[Crohn's 35]

Hang in their Olivia, Pirate is right. Sometimes when you flare and the doctor prescribes meds like Pred or antibiotics, then you have a colonscopy at a later date, or any other test, it can mask it too. They also have to get a biopsy in the right spot. I had many test done before I got a dx... even after years of dx, they would not see Crohn's ulcers or inflammation but I was still in pain.

Go for the second colonoscopy, yeah they are hard but it is the best way. Good luck

 

[pcbgirl227]

Hi Olivia, all I can say is hang in there! I understand completely what you are going thru as it took them almost 6 yrs before they finally discovered I had CD and I had already had one resection done. It is very fustrating disease! :ybatty: Trust me on this site has felt like a hypochondriac at one point in time, and it's even worse after you are finally diagnosed so by no means are you alone!!!!

Hang in there and good luck!!!:Flower:

Candace

 

[RachLG]

Hi Olivia~ I'm sorry you are feeling the way you are...I know just how you feel! I've been trying to get a dx for 2 years now and struggled with the "is this all in my head" thoughts too. It's hard not to think that way when 10 doctors have told me "hmmm...can't seem to find anything wrong." I've also gotten a referral to a psychiatrist – the first doc I saw about severe abdominal pain wanted to send me to a psychiatrist! It didn’t cross her mind to refer me to a GI!!?? But anyway, I guess what I’m trying to say is – there are a lot of people on this forum that have “normal” test results and yet still feel lousy…just by the sheer numbers of us, we can’t all be losing our minds. I just keep telling myself that I know my body better than anyone else and I know when something’s wrong. I keep the hope that one day doctors will see something that brings everyone on the same page. Don’t feel like a loser for wanting a test with some sort of positive result – it’s never good to hear that something’s wrong with you, but in our situation, we KNOW something is wrong and a positive test result would help move toward disease management. If I have to hear one more doc say “everything is normal, so that’s good that we didn’t find anything” I might actually go bonkers haha. I am with you too on the incredible expense of being undiagnosed as well – I think about all the money I spent over the last 2 years, with still no answers, and I can’t help but think about the things I could have bought! A new cozier couch, the softest blanket money can buy, and cozy, anti-tummy-squeeze pants – this could have been my own treatment haha I hope you get the answers you’re looking for soon. In the mean time, hold on to your wits and know that you’re truly not alone.

 

[Astra]

Hi girls

I'm no longer a hypocondriac, I'm a Crohnie, it's official !
I'm no longer neurotic, depressed, mental, psychosymatic, deranged, deluded, dementing, and need to be sectioned, I'M A CROHNIE, IT'S OFFICIAL

and I have the letter to prove it, to shove up the GP's sorry arse!!

I know exactly how you feel girls, it's just awful, I just hope you scream and shout for second opinions, and answers and don't do what I did, accept all that mentioned above, and just bimbled along in pain, cos it took me 15 years to get a dx and I had a hystectomy too (misdiagnosis, long story) and at one point, i think they might have done a lobotomy too, just to shut me up!
best of luck, remember keep shouting!

Joan
xxx

 

[horseluvnhonee]

Wow...thanks everyone....you all are making me feel a lot better about things!! Regarding the hs-CRP...I called my PCP today and asked him about it. I told him that the GI sent a letter saying it was mildly elevated and about how she said it meant that I have some cardiovascular issues not fully under control..i.e B/P and cholesterol. He didn't agree...he said that they will use that test to check for cardiac disease risk but only test it in people that are completely without inflammation from another disease...i.e RA, crohn's etc. He feels the positive result is directly linked to all my pain, inflammation, fevers, etc going along with whatever it is that I have going on. That made me feel better but it's always hard when you have two different docs that say totally different things??? I really trust my PCP and he works with a lot of older cardiac type patients in his practice. Maybe it's just that I want to believe him more..lol....finally..one of the first tests that reflects the inflammation that I feel. Now along with my low ferritin and B12...we may have a case..lol.

Ok..enough babbling..I have a knack for that..lol. I think I'm going to head to bed..I can really feel the effects of tapering my prednisone..even though I was on it for such a short time. Also....the weather here in wisconsin has been warm...but very damp, foggy and rainy....really gets to my joints.

Ok..thanks again all....this is a great place with so many great people!

 

[teeny5]

I got my diagnosis rather quickly, however I too thought I was going nuts. For a while I thought I was making myself sick. Then the CT scan showed inflammation and a colonoscopy later they said they thought it was Crohn's.

I hope you find some help here. This forum helped me a ton.

 

[Jonhenry]

Sorry to hear about your problem. I had 4 years of all kinds of tests before they found crohns. And all the symptoms in between. After diagnosis and I read about the disease did I think "why didn't they find this right away?". It might be a rocky road, but you're the one who knows when your body isn't working right.