Hidden Crohn's

[Ackthatkid]

Hi, Im new here I just thought I might try to find someone else going through the same "elusive" crohn's I am. Here's my story: Late last year I started getting mild stomach cramps every now and then, but as time went on they became more frequent and more painful. At first I just figured it was a stomach bug and dismissed it as such, but it became hard to not notice something was wrong when it came around February and the pain had intensified to an almost unbearable amount. I went to my general practitioner, and they sent me to a GI my insurance covered. For months and months I was going to this doctor and instead of him trying to help my pain, he was solely hunting for the diagnosis that would not come. I did somewhere around 6-7 blood tests, stool samples, CAT scans, X-Rays, a colonoscopy, an endoscopy, and even the Prometheus test (which I was failed to be informed it is a test that is sent out and therefore, under different insurance... we didn't know this till we got the 600 dollar bill.). All of these came back negative for crohnes and IBD, but there was still a significant amount of inflammation in my Ilium area. My friend has had crohn's since he was 16 (hes now 23) and my symptoms practically mirrored his. Anyways, the doctor only seemed to be worried about diagnosing me with crohn's because he was absolutely certain it was that, but he was just going to make us keep doing expensive test after expensive test to find out absolutely nothing. Now I understand the point of view that you don't want to go treating something you're not sure the patient has, but this doctor eventually started me on prednisone (still no diagnosis) and thats not even the worst part... he had me on 40mg a day!! Needless to say I have a new doctor now that is MUCH better, instead of hunting for the diagnosis he's taking the stance of "I am 97% sure you have crohn's disease" He's weening me off of prednisone now (on 15mg!) and has started me on pentasa to take the place of it. Now, what I wanted to ask was if anyone had to go through the same problems, where the crohn's was obviously there but all medical tests failed to pick it up, and how their doctors dealt with it.

Thank you for any help! I think im gonna like this forum.

 

[penny]

hi i had similar thing i always suffered with diareah an pains when i was a kid it was put down 2 ibs.wasnt until i saw a difrant dr he got the ball rolling an orderd scans an colonoscopy.i had small bowel resection 18mnth ago but a recent scan now shows return of crohns .ime also back on predisone 30mg they do tend to make my joints ache tho.hope you get some answers real soon

 

[fosterschick]

hi hope your feeling better with new meds very soon , for me this is interesting reading as in england they do as littletesting as possible and my consultant is happy i dont have crohns after one barium enema !! even though my symptons mirror crohns and bloods show evidence of it
my doc has been super and i now have a small bowel enema booked in but i wonder if the crohns will show itself that way (if it is crohns) gosh bowel trouble seam soo hard to diagnose !! xx keep us posted on how the pentasa goes xx

 

[Crohn's 35]

:welcome: to the forum Ackthatkid! Your story was alot like mine but thank God we dont pay for services like that. It took a year of tests even after an appendix removal...it took to see a teaching doctor in Toronto and a Endoscopy barium follow thru to the bowel, they could see all the looping actually I did too. Then the report went back to my Gi and he was on my side but the surgeon thought it was all in my head...Bozo... I have learned so much on here and we are a great bunch , we are here to support each other and give our experiences, since we are all different.

Glad you joined us , hope you stick around.!

 

[Angrybird]

Hello there, I must say after reading many posts about the difficulties in getting a diagnosis I am feeling really lucky that I have such a geat GP. Initially it was thought for a short amount of time that I had an eating disorder as I was a 16yr old girl who was running to the loo a lot, my mum was asked to listen by the door to try and hear if I was making myself sick and to see if I was hiding laxatives in my room. It was when I went back to the doc with massive purple bruises all over my legs that he then requested blood tests asap and found that I had a CRP of over well over a 100. At my first appt at the hospital the doc said that even though apart from bloods they hadn't done any tests yet they were fairly sure I had crohns based on my symptoms and put me on prenisolone straight away whilst they did the investigations to help with my pain and try and get some weight back on me. This was all done in a matter of a few short weeks. I had never heard of crohns until I was diagnosed but when I found out it seemed that everyone and his mother had it and seemed almost common. I hope you are able to continue to come off the pred and good luck with the new med.

 

[Sarah123]

Hidden crohns

Hi
It took drs two years to diagnose my crohns. I had none of the typical abdominal issues most of you have. Scopes, prometheus tests all negative. What I did have was a rectovaginal fistula and peristomal pyederma. A new gastro dr. said that all pointed to crohns. I am on Remicade and it is helping the pyederma. I still face a third attempt to repair fistula.

 

[myoung87]

Hi and Welcome,

I have found this forum very helpful. I was going through hoops for 2 years before I was diagnosed with Crohns. My blood work my first colonoscopy, Endoscopy, x-rays, and the barium with small bowel follow through still didn't show crohns. Finally in October I had another colonoscopy and endoscopy, and that is when they found it. I was on 60mg of prednisone twice and it did nothing. I am currently on Asacol and Entocort 9 mg a day. This is not helping either so i am trying Remicade next week.

Hope you find this forum helpful and please keep us posted.

 

[Ackthatkid]

Thank you all for sharing your experiences with me, it does help to know its common for the diagnosis to take a very long time. My come down off of steroids is going very well, and although I've lost my appetite again, my horrible acne breakout is subsiding and im losing the weight I gained. As for the question about vitamins and supplements, I take a multi vitamin, citrical, and fish oil every morning, along with my prednisone, 2 pentassas 4 times a day, and omeprazole for my acid reflux.

That actually brings me to my next question; my flare ups seem to be a whole lot worse when I get an acid reflux attack while its happening. Is there some connection to my reflux with the (suspected) crohn's?

 

[cb323]

Hi,
I am dealing with the same issue of all test normal but GI convinced that I have crohns. He started me on Pentasa and I seem to be feeling better. I never knew how hard crohns can be to diagnosis till I found this forum. It makes me sad that so many are suffering and dont know why. It helps to know that people here understand what frustration we are dealing with. Hope you are feeling better.

 

[lookame]

Mine was defiatly there. My first colonoscopy showed it in plain site. It wasn;t hiding...after my colonoscopy the doctor sat me down and says your symptoms and colonoscopy show UC but I don;t want to treat you until the biopsies come back. Well he fell off the face of the Earth.

I went through a year going to the ER every couple of months to get shrugged off then I got to sick to be avoided anymore. Needed a blood transfusion and admitted. Colonscopy showed severe UC to be diagnosed as crohns through biopsies and bloodtests.

 

[Ackthatkid]

Well ive been to my GI and found out I do have pretty aggressive crohn's. So I suppose I finally got my diagnosis, even though its not "officially" showing on my xrays or bowel follow throughs. He's going to put me on a regiment of cimzia now, which im going later this week to set up. Anyone have any experiences with cimzia? Good or bad, I just really want to know what to expect before I start getting monthly injections.

 

[Stillindenial]

Well ive been to my GI and found out I do have pretty aggressive crohn's. So I suppose I finally got my diagnosis, even though its not "officially" showing on my xrays or bowel follow throughs. He's going to put me on a regiment of cimzia now, which im going later this week to set up. Anyone have any experiences with cimzia? Good or bad, I just really want to know what to expect before I start getting monthly injections.

Wow Ackthatkid...a diagnosis at last...I'm not sure if it feels better or worse when it is confirmed? How did your doc finally decide? I have been in the same situation for over 5 years...had a number of ...scopies...once the doc. found lesions but the biopsy did not confirm cohns. But I have inflammation of the bowels, and frequent flare ups. The relfux is bad also, as it seems to be for you. And my present state hospital doctor (I ran out of insurance ...they said I have a cronic desease so they can't cover me any more), a surgeon by profession put me on Pentasa...and it is helping a lot.
But the lack of diagnosis is confusing for both me and my friends, workmates etc.
Wishing you all the best on your new medication...hope you reach the remission stage!

 

[nogutsnoglory]

I'm sorry you are having such a tough time getting diagnosed. Maybe it's worth seeing a few specialists or top of the line docs.

 

[Bigchillgrex]

Hi, I'm 15 y.o and I have done numerous test ranging from colonoscopies to CT scans and all of them have come back negative. The problem is my friend who is 16 years old has had Crohn's since he was 13 and my sympotoms are exactly like his. I have had such bad abdominal pains to a point where I couldn't move. I had an abscess to form on my pelvis which was caused by fluids leaking out of my bowels via a fistula. Then i had another fistula to form (after numerous treatments, still hasn't gone away) that links my bladder to my bowels and causes air to come out of my penis when i urinate. So all i'm asking is should i believe my GI doctor and say i don't have Crohn's or not?

 

[nogutsnoglory]

Symptoms are hard to go by because many symptoms are characteristic of multiple illnesses. Your particular issues sound like IBD to me though. Have they given you any diagnosis? I wouldn't hesitate to get more opinions.

 

[Bigchillgrex]

No all the tests have come back negative against Crohn's but all of my symptoms, according to my GI, point to Crohn's so he believes that it is Crohn's but it is effectively hiding. We were considering to consult another GI but there aren't many in the area so we would have to go out of state for another consultation.

 

[nogutsnoglory]

I would inquire about the possibility of microscopic colitis. Aside from that, active IBD wouldn't be hidden. Even a family member of mine in complete remission for many years still shows visible signs of IBD.

 

[Bigchillgrex]

Thank you so much for the advice and I will ask my GI about a Microscopic Colitis.

 

[mere282]

I can relate to your problem. Mine started with
A partial bowel obstruction a few years ago. I would
Have one test.. Yup it's crohn's then another
Not so sure now.. My tests are all over the place.
I've been through 4dr's.. Finally found one who
Said it would be great to get a biopsy. To
Confirm but it's not always that easy. We started entcort
And lildia and I finally saw some improvement.
Just keep looking for answers. I just had my first
Hospital stay last month. Even there dr's
Don't agree. It's enough to drive you nuts !
Hope u feel better soon