Home from colonoscopy -- Undiagnosed!

[happyballerina]

He said I was clean and he couldn't find any Crohn's or Ulcerative Colitis.

He took biopsies which he is going to check for microscopic inflammation, although he said that normally that is only present in older people (I'm 18.)

I am also going to get labs done to check for Celiac, although I'm pretty sure they tested me for that a couple years ago and it came back negative.

Anyway, I have to see him again in two weeks when he'll go over the results of the biopsies with me.

I am very happy that it's probably not CD or UC, but at the same time I'm quite upset that I still don't know what is making me sick. I was afraid of this

And I feel like I hypochondriac, even though I KNOW I saw blood and it did come back positive for blood on the FOBT. I also know I've been in pain and I've had diarrhea, so I cannot be making this up?!

I guess I'm in an awkward position now. It doesn't help that my mom is not one to push for a diagnosis, so I feel as if I am going behind her back if I keep looking for an answer.

Who knows, maybe it's all in my head. Maybe the diarrhea, the really bad pain, the other pain that's different but just as bad while I'm exercising, the blood, the mucus -- maybe it'll just stop now.

But I can't just ignore it if it doesn't!!

I don't know why I'm so frustrated, but I really don't know what to do now.
Just see what happens and wait it out?

I do know that the colonoscopy doesn't capture the small intestine, so I know that if I do have something there he would not have been able to see it. But, again, I feel like a bad person for insisting that there is something wrong with me. I can't help but think that I'm over reacting. But at the same time, I can't deny that I have been in pain that has brought me to tears. *Sigh*
:sign0085:

 

[Awbrey]

sorry happyballerina that they still have not found anything :-( Im a firm believer that you know your body better than anyone else and if you believe that something is wrong it usually is.

Hang in there.

 

[Cat-a-Tonic]

Happy, I'm sorry to hear that you're still undiagnosed (feel free to check out the Undiagnosed Club thread in the Support section of the forum - I'm undiagnosed myself so I understand how frustrating this is).

If you've had blood in your stool, then it's definitely not IBS. If you google the diagnostic guidelines for IBS, you'll see that there are a few red flag symptoms that rule out IBS. Some of those symptoms include frequent fevers, unintentional weight loss, nocturnal diarrhea (when you wake up in the middle of the night and have to go), and blood in the stool. If your doctors try to say it's IBS, that means it's time to get new doctors!

And it's definitely NOT all in your head! Your pain, the blood, the other symptoms - those are very real and obviously affecting your quality of life. It's not all in your head, you are not crazy, you are legitimately ill, and don't let anybody tell you otherwise! (Again, if your doctors try to say that it's in your head/it's stress/you're depressed/etc, it's time to get new doctors!)

Just because the scope didn't see anything amiss, doesn't mean that the biopsies won't pick up on something. If you have something like microscopic colitis, that can ONLY be seen on biopsy. David, the forum administrator/owner/mastermind (whatever his official title is ) was recently diagnosed with a form of microscopic colitis. His c-scope looked perfectly fine but they found the colitis on biopsy. If he sees this thread, I'm sure he'd be happy to share his experiences with you and maybe give you a bit of hope.

And, if the biopsies also come back clear, that again doesn't mean that you're not ill or that it's all in your head. If you do have Crohn's, that can manifest anywhere from mouth to anus. It could easily be hiding somewhere in your small intestine where the scope can't reach from either end. Have you had any other tests such as CT scan, MRI, SBFT, etc? Sometimes that kind of test can pick up on inflammation, ulcers, etc in the small intestine.

This is getting long and I apologize, but I just want to tell you that you are not alone - many of us on here are undiagnosed and fighting for answers too. Feel free to vent to us anytime. Being as ill as this and then being told your test results are normal, that has got to be one of the most frustrating and exhausting things in the world. But you can't give up - keep fighting for answers. You're not alone and you will get through this! Thinking of you and sending happy thoughts your way!

 

[happyballerina]

Awbrey and Cat-a-tonic: thank you so much! You guys really cheered me up.

I WILL join the undiagnosed club now

I will stay on the forum because I feel I can relate, and it helps me keep track of my symptoms, too. That way I can see if I'm still feeling bad.

I did read that about the blood with IBS thing -- that if you have blood, it's not IBS. My GI hasn't said it's IBS and I really should wait and see what he says if the biopsies and celiac test come back negative, but I really do hope he won't try and pull that string on me. I feel biased though -- I think that despite my previous experiences with doctors (not GI doctors -- this is my first time with a GI doctor; my infamous bad experience is when I went to too many doctors to count for some ankle problems -- very disturbing to a ballet dancer! -- and I ended up diagnosing myself, getting my diagnosis confirmed by x-ray, and needing surgery!), I do feel like so far my GI is nice and a good doctor. So I will try not to stress too much yet because I still have to see him in two weeks.

I have not had any other tests at all, unless you count the FOBT from the rectal exam. My GI told me he usually would not recommend a colonoscopy before doing other tests, but that because of the bleeding he wanted to do it right off the bat. So the scope today was my first test.

I really appreciate everyone's advice and kind words on here. You are right, if I feel bad then I can't just be making it up. Especially if I have physical evidence I've been bleeding.

I'm going to go watch a ballet video I've been assigned to study by tomorrow, and then I will introduce myself to the rest of us "Undiagnosies" in the undiagnosed club!

One more question (sort of off topic, but in my defense it's related to me being undiagnosed) -- how do I change my signature? You guys all have little records of your test and DX history and I'd like to start mine now that I've had my first scope (and have no answers, but...lol.)

Thanks again times a million, I am so thankful to have found this forum

 

[micjac]

Sorry Ballerina, but I agree w/Awbrey, you know your body better than anyone else. Definitely follow Cat's advice and look around the forum for the undiagnosed threads. There are so many tests, so many nooks and crannies to the colon area that your doc must be missing something. You are not imagining this. Talk to your Mom. I'm sure she wants what's best for you and if you are in pain, so is she. My best wishes for you! Sending a hug!
Jan

:getwell:

 

[Cat-a-Tonic]

To change your signature, click on "User CP" in the upper left corner. That'll take you to the control panel where you can change your signature (there should be a heading for that).

I'm sorry you have to join the Undiagnosed Club for now. How long have you been having symptoms for? I've been ill for just over a year and a half without any answers, and I've been through most of the tests that are available. It's been miserable, and I wouldn't wish this on anybody. I really hope you're able to get answers more quickly and easily than I have!

 

[David]

I got the "older people" line for Microscopic Colitis as well. I'm 33 and I came back positive for it. Good times.

 

[allieinwonder]

I'm sorry you didn't get the answers you were looking for! I am one of the "undiagnosed" on the forum and I completely understand what you are going through. Cat really said it all, but I just wanted to tell you to not give up! A clean colonoscopy does not mean there isn't anything to find. The next thing I would push for is an upper endoscopy (tube from your mouth to stomach), or a capsule endoscopy (pill that takes pictures through your small intestine). I have been dealing with my illness for 6 years, severly for one, and have had every test under the sun and they have all come back normal, but I have red flag symptoms that show its not IBS. I am getting a SBFT and pill cam soon and I'm hoping that it will end my diagnosis journey!

I hope you get answers soon and see you around the undiagnosed forum!

 

[e13 boy]

And I feel like I hypochondriac, even though I KNOW I saw blood and it did come back positive for blood on the FOBT. I also know I've been in pain and I've had diarrhea, so I cannot be making this up?!

I guess I'm in an awkward position now. It doesn't help that my mom is not one to push for a diagnosis, so I feel as if I am going behind her back if I keep looking for an answer.

Who knows, maybe it's all in my head. Maybe the diarrhea, the really bad pain, the other pain that's different but just as bad while I'm exercising, the blood, the mucus -- maybe it'll just stop now.

But I can't just ignore it if it doesn't!!

I don't know why I'm so frustrated, but I really don't know what to do now.
Just see what happens and wait it out?

I do know that the colonoscopy doesn't capture the small intestine, so I know that if I do have something there he would not have been able to see it. But, again, I feel like a bad person for insisting that there is something wrong with me. I can't help but think that I'm over reacting. But at the same time, I can't deny that I have been in pain that has brought me to tears. *Sigh*
:sign0085:

You are not a bad person - you are the only one who saw the blood & mucus.
You felt the pain - they don't.
Keep going back & get every test until you find out what is wrong.If you are not satisfied with your Dr's opinion,get another one.
Many people will confirm on here it can be a real battle to get the correct diagnosis.It can be the most frustrating thing to have to contend with but only YOU know your own body.
I was diagnosed 10 years after the CD started(despite 7 operations).
Within a week of diagnosis i underwent right side hemi colectomy.
I've read the pathology report from that operation - the most severe CD was in the section of small bowel where the colon(large bowel)joins it.That would not have been seen by colonoscopy.
Every colonoscopy i had over the next decade failed to show how active the CD was - that led to my 2nd resection.
Please don't let them fob you off.
I hope you find out what is going on ASAP & then find the best treatment to help you.

Best Wishes

 

[xJillx]

I agree with Allie, you need to explore the small intestine by either endoscopy, pill cam, or lower bowel series to be sure there isn't any inflammation lurking there. In my opinion, I think the endoscopy would be the best bet for answers being that biopsies can be taken. Hang in there and don't give up!

 

[KaLa]

It took me forever to get diagnosed with UC. When I first went to the GI doctor, I was in my late teens/early twenties, and even though I had blood (lots), and took stool samples that showed that there was blood, they didn't officially diagnose me for a while. Personally I think that they thought that I was "too young" to have IBD. I went through all kinds of tests before they finally, reluctantly diagnosed me with UC.

 

[happyballerina]

micjac -- thanks I will talk to her but I think I'll wait until after the appointment with my GI because I guess it will depend on what he says. She's already in the state of mind that "Oh good! We're clear, you don't have CD, yay!" I asked her, what other explanation does she have for what's been going on? And she answered that sometimes these things happen. Hmm.

Cat -- thanks for the signature changing instructions! As for how long I've been having symptoms...that's complicated. A couple years back I was having nonspecific symptoms including gas and bloating and what I referred to as a "bubbly" stomach. They ran some blood tests and the only thing they noticed was an abnormal pANCA. I did mention this to the GI today after the scope and he said he doesn't think it's relevant (I wonder why?) The *real* symptoms started this January. In December I had some sort of stomach flu that had me with really bad D. I knew it was a bug because my mom got the same bug at the same time. Only, mine lasted over two weeks. Eventually I felt pretty much all better. However, I kept getting a lot of mucus with every BM, sometimes it was even mucus without an actual BM. I noticed loose stools or full-out D sometimes. I have been going to the bathroom very frequently. Not like some of you here -- not 20-30 times a day -- but on a bad day I've gone more than 6 times for sure, which is still a lot. I told my mom all this while that I was still having D and stomach issues, and she said it's probably just leftover from being sick and that she gets mucus sometimes too and not to worry. So I ignored it for about two months. Then I started bleeding and my mom had me make an appointment with my new GP right away. She did the FOBT that came back positive and referred me to the GI who I saw two weeks after, and who told me he wanted to do the colonoscopy right off the bat.

So, in short, I guess I would have to say that I've been having the more worrying symptoms (not just "tummy trouble") for about 4-5 months.

For the record, I was on Accutane last year until October or November 2010 (can't remember). It just made it all the more scary. It was quite a coincidence because my ballet teacher hated that I was taking Accutane, and she told me she saw there was a law suite against it. Then when I told her about my bleeding she just gave me that look like, "I told you so." I also mentioned this to my GI when I first saw him, and he dismissed this as well, saying he thinks it's a lot of hype. I'm not sure what to think about the whole Accutane/IBD connection myself (if it exists), but the fact is I was on Accutane and now here I am with IBD symptoms. Including severe joint pain in my hips, btw. Maybe it's unrelated, but it all just fits so well that it's hard to look at it differently! I know that is probably a fault...

David -- I'm curious, did you have any symptoms or did you find out by mistake? Do they treat microscopic colitis the same way? Is it a type of UC?

allie -- I will mention those, if he does not, at my next appointment. I will tell him that I know colonoscopies miss out on the small intestine entirely (well, I guess they do see the terminal ileum, but anyway...) and that I was wondering how he could know that there was nothing there. That is, unless he says something first. I'm going to try going in with a hopeful attitude that he will try hard to help me feel better rather than being pessimistic and going into it believing he is just going to treat me badly. Thanks for the list of tests -- and the reassurance that I'm NOT the only one with symptoms that don't get confirmed by tests. Good luck with your SBFT!

e13 boy -- You are very right, I am the only one who sees the blood (except for the FOBT) and mucus and feels the pain. I will take your advice! 10 years is a long time, I'm glad you finally got your answer. It seems like several people end up having disease in their small bowel; if this is really the case, I'm surprised that doctors that schedule a colonoscopy don't just schedule an endoscopy or one of the other SI tests while they're at it?!

Jill -- I will keep that in mind, thanks!

KaLa -- that's interesting because I read that IBD most frequently affects people between 20-30 years old! Good thing they finally diagnosed you. How do you guys manage to not give up? I know this is just the beginning for me (hopefully not though), and I feel like at some point if I continue not having a diagnoses for a very long time I might just feel like a fool for pushing for a diagnosis.

---

I know this post is extremely long, I just really appreciate all of your guys' advice and I tried replying to each and every one of you. you've been sooo helpful and I can't thank you enough. I have a feeling this forum will be much needed on those days I feel like giving up!

One last question, maybe you guys can answer. Is it possible the bowel prep is still working on me? Because I'm still getting D. Not as "explosive" as when I was actually prepping, but a lot more watery and diarrhea-y than even my usual D. Just curious if it's to do with the prep or if it's just...me being sick.