Received letter from GI's office today

Kellyerin222 · Post by **Kellyerin222** » Sat Mar 08, 2008 3:42 pm

Opened the letter and it said "We have received the results of your colon biopsies that were taken on 2/22/08. The results were normal. No change in your treatment is anticipated". (signed by GI)

So I guess when the nurse told me that the biopsies came back as nonspecific inflammation that is considered "normal"-- the thing that upsets me is this letter does not even state there was nonspecific inflammation found.

I am like so sure now he is going to come back and tell me this is IBS---part of me feels confused, part of me feels relieved, part is frustrated and irritated. I don't know what to do anymore.

Kel

ErinD · Post by **ErinD** » Sat Mar 08, 2008 3:58 pm

ugh, Kelly, i have been there before and it is NOT a good feeling. You are relieved on one hand that its nothing serious but yet you want to know what the heck is wrong with you. I like you , KNOW it is not IBS and for me that is just a cop out for the docs to say when they don't really know what is wrong.

I can't remember, but was this Dr. a second opinion for you? If not, i would suggest definitely getting your results and going for another one (if he does infact come to say its IBS). I forget exactly why, but what were on the prednisone for?

Don't give up hope yet...i think a lot of us have gone through many doctors to finally get a diagnosis (i am going through that myself right now so i am in the same boat as you...i'll probably get my 'your fine' letter this week!)

Kellyerin222 · Post by **Kellyerin222** » Sat Mar 08, 2008 4:19 pm

Erin,

Yes, it is not a good feeling you are right. Everything I have read about IBS states if you have "weight loss, fevers, etc" that is not symptoms of IBS.

I know this is not all in my head. I am not a hypochondriac--- I put off going to the Doctor for over a year because I did not want to deal with it, did not want to think something could be wrong (denial), then it just got to be too much--- so if I was a hypochondriac I would have been in the Docs office constantly.

This will be 3rd GI. First one in June 2005 did colonoscopy (no biopsies) said it all looked good-- I didn't go back. Then January 30th saw GI that family physician referred me to in his office (he did not deal only with GI problems, but basically like another family physician). He told to me to take Questran-- had a bad reaction to that. Then I switched over to this new one and really thought he was a good GI Doc, plus heard he is a great one from my husband's physician.

It was the family Doc that put me on Prednisone in December-- first round it worked, went 2-3 weeks feeling great and then out of nowhere it all came back again. I was not dealing with stress at the time the symptoms came back and had no clue why it just popped up again-- so he put me back on the Prednisone (which again worked).

I guess I will just wait for his call this week about pill cam results. I do think he is going to give me the "IBS" diagnosis, hand me a prescription for lomotil and that be it.

Dee · Post by **Dee** » Sat Mar 08, 2008 4:22 pm

Hi !!
I can't help but ask this question, Kel.
You stated that you had your gallbladdder removed??? Correct me if I'm wrong.
And if so, how long ago was that surgery?
I'm also curious as to why you were on the Pred..
I'll go from there as soon as you relpy..

Dee~~~~

Kellyerin222 · Post by **Kellyerin222** » Sat Mar 08, 2008 4:43 pm

Hi Dee,

I had my gallbladder removed the first part of 2004. I had no problems (diarrhea, stomach pain, etc) after the surgery everything was fine. It was in June 2005 I started to get abdominal pain and diarrhea. The Questran the one GI Doc had me try is prescribed to people who have diarrhea after gallbladder removed because of excess bile, but 1 packet caused me to have severe abdominal pain in upper left quadrant, that part of my ab became extended and 1 packet caused me to have constipation for 4 days. I thought if it would be due to excess bile because of gallbladder removal that the Questran would have absorbed the excess bile and regulated things??? Not sure if there are any tests they can do to test for this exactly.

Family Doc put me on Prednisone because he said my symptoms looked like Crohn's and he started treating me for Crohn's Disease. I am changing family Doc because I do not feel comfortable seeing him, among inaccuracies and other things, but the Prednisone did work (just feel I should have been tested before being treated with Pred because it is serious drug).

Post by **tex** » Sat Mar 08, 2008 4:57 pm

Hi Kelly,

I agree with Erin. The fact of the matter is, there is no question that there is something inflaming your intestines. I don't remember if you have been checked for celiac disease, but if you have, then the "normal" scope exam rules out Crohn's and/or UC, so unless you have a parasite, or a bacterial infection, (such as E. coli, C. diff, etc.,), the problem just about has to be MC.

As Erin suggested, I would request a copy of the endoscopy exam, (the colonoscopy exam), and see what it actually says. I'm guessing that it does not say that the biopsies were normal. That's just your GI doc's "doctorspeak" for "We don't have the foggiest idea what's wrong with you". There are at least six or seven "known" varieties of MC. It's possible that the pathologist is only familiar with the two or three most common forms, so he didn't make a diagnosis. The report, however, will still contain his findings, and anyone who knows how to read a pathologist's report can interpret it. Additionally, anyone who is familiar with the markers for the various forms of MC, can deduce a correct diagnosis by reading the report, except that certain types, (for example, mastocytic enterocolitis), require special staining of the biopsy slides, in order to make the mast cells more visable.

It's also possible that he made an inappropriate judgment call, and if that's the case, then the indications in the report would be much more valuable than the conclusions, and/or official "diagnosis". As Yogi Bera used to say, "It ain't over til it's over.", and obviously, it won't be over until you get a correct diagnosis, and an appropriate treatment plan in place. I'm no doctor, but that's the way I see it.

Tex

P S I would be very surprised if the "pill cam" provided any useful information.

Dee · Post by **Dee** » Sat Mar 08, 2008 5:07 pm

Most that are put on Questran powder seem to have to play around with the dose starting with the lowest, to see how the stool forms.
They also are prescribed a "low" dose of Elavil, which is an anti-depressant, but used used after gallbladder removal when the patient ends up with a dysfunction of the guts nervous system from the surgery which makes your gut hypersensitive and prone to being over reactive...
Just something to consider here ......

Dee~~~

Kellyerin222 · Post by **Kellyerin222** » Sat Mar 08, 2008 8:13 pm

Tex: Thank you, I do not think they are going to see too much on the pill cam because I do not believe this is Crohn's-- as if it was they would have likely "seen" something in the colonoscopy. I am suppose to hear from the office next week and if not I will call and ask the results of the pill cam, but also going to request copies of the reports you and Erin suggested.

Dee: Thank you, I will ask the family physican (new one) see this upcoming week. I was prescribed the lowest dose (in packet form) and the RX stated to take it 3x per day, which I only got through 1 packet and it happened. I am a little afraid of taking that stuff again though because of the reaction that I had, could be possible to not take 1 packet and only try 1 teaspoon or something and go from there.

I do think one thing is when I first saw this GI-- I was not ill, I had already been on the Pred for about 4-5 weeks when I first saw him. Had he seen me when it all hit, then he would have confirmed the fever and visually saw I was ill. In the end if he gives me IBS diagnosis then I will just take the anti-diarrhea medication and hope it does not return, but if it does then I will make sure that he sees me when I am visually ill. There is a fact when I was on Pred (anti-inflammatory) the diarrhea stopped. I went from being in the bathroom all day long, to normal bowel movements (except lower doses Pred intermitent diarrhea). I don't see how that can be a placebo effect.

Either way just going to try to live healthy, eat right, exercise and hope for the best.

ErinD · Post by **ErinD** » Sat Mar 08, 2008 8:30 pm

Kelly,
IBS definitely does not produce fever and weight loss like you said. If the prednisone did start to work there is inflammation somewhere they just need to find it. Same thing with me. My doctor says he knows it isn't IBS due to the symptoms i am having and is remaining persisitant in finding what is wrong. He did the Pillcam first with me and of course it found nothing as well. I will say it did make me feel somewhat better in a way that he saw the inflammation in this second colonoscopy and i hope he can figure out what is causing it, but deep down i still worry i will be handed that 'IBS' diagnosis which i will just not accept.
Keep your chin up, they will figure out what is wrong with you and we especially know you are not a hypochondriac (although its easy for us to think that when nobody can 'find' anything!!).

Dee · Post by **Dee** » Sat Mar 08, 2008 8:41 pm

Hi Kelly!
Your case is a tough one to crack.
I just hope that your new PCP can help or direct you to someone that can figure this out!
I have to say that I have never suffered with alot of the symptoms that most have had here when being diagnosed with MC . Plain & simple, I just had chronic diarrhea.. No cramping, bloating or pain, no nausea no headaches, no arthritic type inflammation, nada!!!! My eyes were really opened to how this disease affects everyone in so many "different" ways.
I had to go thru a few doctors myself, so I'm sending positive vibes your way that whatever is causing you problems will be figured out!!

Dee~~~

greengirl78 · Post by **greengirl78** » Sat Mar 08, 2008 9:15 pm

Kelly,
That must be very frustrating. I hope that you are able to seek out another opinion, or at least receive a copy of the report, to have another GI take a look. I hope that you are able to gain an answer soon, as we all know how difficult living with these symptoms can be. There has to be something going on, otherwise the Pred woudn't have cleared it up... right? Did you mention that to the doc?
hope you're feeling better.
Oh - have you been checked for celiac disease, like tex asked? I know my GI doc took one look at my name (Irish to the t) and that was his first thought. He told me it was very common in Irish folks. (with a name like Kelly Erin... are you irish?)

Polly · Post by **Polly** » Sat Mar 08, 2008 9:20 pm

Kel!

I agree with Tex. You need to get a copy of the actual pathologist's report. "Non-specific inflammation" is a way MC is sometimes described. I suspect what you received was your GI's interpretation of the pathologist's report. It would also be interesting to see how many biopsies were taken and where they came from, because this can also affect the ability to make an accurate diagnosis of MC. I'll bet you a GF doughnut that you have MC.

Love,

Polly

P.S. Ireland has the highest incidence of celiac disease in the world. But don't forget, those of us with MC are usually negative on the standard celiac blood test. It's best to get Dr. Fine's more sensitive stool test if you decide to get tested for gluten sensitivity.

mle_ii · Post by **mle_ii** » Sat Mar 08, 2008 10:38 pm

FWIW I would probably be diagnosed with IBS since my last biopsy came back negative as well. But I know damn well I don't have IBS or at least what most Drs thing is IBS.

Mike

kate_ce1995 · Post by **kate_ce1995** » Sun Mar 09, 2008 7:41 am

Just adding my 2 cents. Get the pathology report. Mine said something similar...forget the exact wording but it was along the lines of slight inflammation of collagenous bands. And my GI actually told me I had microscopic colitis but that that didn't mean anything and "we don't know what that means". I got on the internet when I got home, found these wonderful people and found out it really does mean something and was able to find my path to recovery.

Katy

Kellyerin222 · Post by **Kellyerin222** » Mon Mar 10, 2008 5:55 am

I am going to request a copy of the pathologist report as I would also like to see how many biopsies were taken and where exactly "nonspecific inflammation" showed up.

I am Irish actually. Mother was going to name me Tiffany, but Grandmother said-- no she's not a Tiffany, shes a Kelly Erin, lol. I had the blood test done for Celiac Disease and that did come back negative, but I will look into getting a more senstive test done to check everything out. If there is any possiability it is Celiac D-- then that would explain why I had so many teeth problems in the past two years.

greengirl: I actually did tell GI that Prednisone brought me out of the flare-- not sure if he thought it was a placebo effect (it was not, 2x in a row confirms that), if he thought I was exaggerating or he is dismissing this piece of evidence.

Mike: It's good to know that I am not the only one that knows this is not IBS. Frusterating thing is trying to question the Doctors initial diagnosis and not having a Doctor's degree.

Thanks everyone for your support. I am hanging in there and just hoping I can try and keep things under control.

Kel