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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Crohn's with negative biopsies...?


03-14-2016, 04:40 PM   #1
gemini768
 
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Crohn's with negative biopsies...?

Hello all,

(Sorry in advance for the novel! I'm a newbie here.)

Since August, I have been dealing with debilitating GI symptoms that have so far gone undiagnosed. It all started with severe lower right abdominal pain that was thought to be gynecological after an ultrasound revealed some small ovarian cysts that were subsequently removed, along with my appendix as appendicitis was suspected during surgery. Both the removal of the cysts and my appendix did not help my symptoms -- they have only gotten worse since.

Around late October I started having frequent diarrhea on a nearly daily basis (sometimes multiple times a day) with blood often in my stool, neither of which have gone away. I also found out that I was severely deficient in vitamin D. I have since experienced extreme fatigue and general weakness that has affected my life so much that I have been unable to have a job. I am only 22 but feel like an 80-year-old most of the time.

Due to all these symptoms, I went to a local GI doctor, but had an extremely upsetting experience, as he tried to diagnose me with IBS before I even explained all my symptoms/medical history and told me I was wasting his time. I saw a different GI doctor last month, who looked at a CT scan that was previously done and saw that my ileum looked larger than normal. A few days after seeing him, the pain had gotten so bad that he admitted me to the hospital and performed a colonoscopy.

The colonoscopy showed that I had inflammation in my ileum. My doctor was confident that it was Crohn's (which was already suspected before based on my symptoms and the CT scan results) and was sure that the biopsies would confirm the diagnosis. He started me on Budesonide, but I ended up back in the hospital a couple days later because the pain had gotten so bad, mainly after eating. Much to both my doctor's and my surprise, the biopsies came back normal. I ended up in the hospital for five weeks and underwent several procedures, including an upper endoscopy (which showed lots of stomach inflammation), a capsule endoscopy (completed twice, since the first time it got stuck in my ileum for 2 weeks and was finally expelled after THREE nights of laxatives -- one night of Citroma, and two nights of MoviPrep!), and another colonoscopy. I was not able to tolerate food and could not eat for over two weeks, and have so far lost about 25 pounds in 1.5 months (I ended up on TPN for a week). Yet somehow, I kept being told that everything was "normal," and was discharged from the hospital after being there for over a month, despite still being symptomatic. In the end, my GI doctor -- who was originally confident it was Crohn's and ordered several procedures -- basically gave up on me and told me it was all because of "stress." I first left the hospital a month ago with a Crohn's diagnosis, but the other day was discharged being told that my symptoms were "subjective" -- extremely frustrating. I am now in the middle of making an appointment to see another GI doctor, because this is ridiculous.

So, my question is: Could Crohn's still be a possibility even though everything is coming back "normal" despite the findings on the original colonoscopy? What also seems to suggest that it's still Crohn's is not only my symptoms and original colonoscopy findings, but also my experience thus far with steroids. I was first put on Budesonide for a few days, then on IV solumedrol, but was taken off of it after a few days because the doctors weren't sure if it was Crohn's, despite the fact that I had noticed a difference. A couple weeks ago I was started on Prednisone because my GI doctor still thought that my symptoms were caused by the inflammation. After five days I noticed that my pain was not as constant (the only other med that had helped my pain was IV Dilaudid -- that's how bad the pain has been), and was only bad when I tried to eat (after not being able to eat for over 2 weeks), yet my doctors STOPPED it after less than a week. They didn't believe me when I told them I thought it was working...

I find it strange to have everything come back "normal" (even though my GI doctor did say that my stool culture showed a bit of inflammation) when everything else suggests Crohn's. When you consider the frequent (and often bloody) diarrhea/loose stools, extreme fatigue and weakness, vitamin D deficiency, weight loss/inability to tolerate food, severe lower right quadrant pain, original inflammation in my ileum and in my stomach, and the fact that the steroids were helping to control the pain, it all seems strange for it to NOT be something like Crohn's. I also had shingles over a month ago, which is often caused by something autoimmune in someone my age. Since being released from the hospital, the pain has also spread to my upper abdomen and has been the worst it's ever been, the bloody stool has returned, and my bowel movements are actually quite painful. It seems too severe to be functional, and is absolutely not psychological. (In fact, health issues aside, I have been the happiest I have been the past five months since being in a new loving relationship -- with a boyfriend who, weirdly enough, has Crohn's!)

Thoughts? Advice? Thank you all in advance!
03-14-2016, 05:30 PM   #2
ronroush7
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I think that it could possibly be Crohns. I think that a second opinion is a goof idea. I hope that you get some answers soon. Let us know. There is a lot of support here.
03-14-2016, 07:37 PM   #3
everthin
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Well .. you have quite a few things going.

They did same to me, said you'll have to wait for it to get worse before we can help you?, after they cut out a completely healthy organ and my health and pain got worse, I'm like ok, um, errr, really, as if I'll trust anything these quacks tell me again.

Crohns diagnosis is missed 30% of the time, if it's in part of your intestines where the current scanning equipment does not get too then they won't find it.

I'm surprised they haven't gone after your gallbladder yet, and they may go after that next as the pain for that is located in the URQ area, which is how they got mine.

I hope they keep your appointments.

Their are some massage techniques for ileum stuff, google them up, also on youtube.

Last edited by Lisa; 03-15-2016 at 07:40 AM. Reason: removed non-supportive content.
03-14-2016, 08:01 PM   #4
tots
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All your tests can be negative and you can have CD. Pretty sure my new Dr was surprised by my CT scan results. It can be very hard to diagnose.

Lauren
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Diagnosed= 1992 and again Feb 2012 Confirmed with
CT enterography May 2015 !!


Waiting for the ok from my Ins company to restart Remicade. Will also start Imuron to get into remission!
I know it's out there somewhere and I WILL find it!


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Ok, my family Dr told me to cut down on the stress- a husband, 3 kids, and 3 dogs!
03-14-2016, 08:15 PM   #5
my little penguin
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There are other things that can cause Gi issues that are not crohns
The thing is to be open minded
For the longest time we and the docs were convinced Ds has eosinophilic disorders which are common in kids with severe allergies
On paper it fit but the scope was clean ( Ds had been on pred 7 weeks prior for allergic reaction)
So another year or so wait since nothing was found
Ds was sick again we were convinced and gi that the first scope was normal due to steriods
So another scope this time it look normal but was crohns on biopsy .

Bechets is a disease that takes time ( years to dx ) mimics crohns and responds well to pred
Might be worth looking into
It's hard to be patient btdt

Last year Ds was sick - severe abdominal pain - assumed crohns flare 3 admits over three months scopes /imaging etc all normal

Gi placed Ds on formula only and then the crohns exclusive diet
The formula worked but once the crohns exclusive food part was added Ds started to get sick

By dec he was tested for Gastroparesis - yep that was the problem the entire time _ not crohns at all

His crohns was fine
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03-14-2016, 09:55 PM   #6
everthin
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May I inquire as to what the "crohns exclusive diet" is, is that SCD? I would love to try Prednisone and see what happens, I may have to look into getting my own as my next doctors appt. is over a month away and getting into see a G.I. here in the U.S. is usually months away from a referral. If I could get a little relief for at least a week or two that would put so much hope into my life, it's been 6 long years of suffering for me with more ups and downs than I need.
03-16-2016, 01:26 AM   #7
tots
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everthin- Do you have an HMO? Between Calif, Washington and Texas, I have never had to wait months to see a GI Dr. Even for the first consult. I have always lived near big cities though so there has always been a big choice of Drs.

I am sorry its taking you so long!
I hope you have a good GP, that works with you until you get your appt.


Lauren
03-16-2016, 08:44 PM   #8
everthin
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Thank you for your compassion. I had problems sleeping last night and have been in a pretty bad pain flare for the last week so I went to our urgent care and they at least gave me a G.I. appt. for April 14th. I've had so many appointments over the last couple of years, I hope they will take my symptoms seriously, not very hopeful, so much pain for so long, such a rollercoaster ride it's been.
08-23-2016, 09:38 AM   #9
ronroush7
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I think that it could possibly be Crohns. I think that a second opinion is a goof idea. I hope that you get some answers soon. Let us know. There is a lot of support here.
I meant I think a second opinion is a good idea
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