Crohn's diagnosis taken away?

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KatyBuckeye

KatyBuckeye

Joined
Jul 10, 2012
Messages
169
I posted this a few days in the general forum, but I didn't get many responses. I'm trying to find someone that may have had a similar experience. I'm probably a bit different from others in the undiagnosed club, because I was able to get a Crohn's diagnosis really quickly. But then it was taken away when I switched GI physicians and now I don't know what to think. I'm very frustrated and stressed about all this. I just want to know what is really going on!

In early July, I was diagnosed with Crohn's disease following a month of acute diarrhea and several years of non-specific GI symptoms (really, really bad gas, bloating, pain in the RLQ). I was prescribed Lialda (mesalamine). I had a bad experience with the GI that diagnosed me, as she wasn't listening when I told her that Lialda drastically increased my symptoms. So, I switched GI docs. The new GI tells me that he can't believe they diagnosed me with Crohn's from looking at the biopsy results and my symptoms. He believes a more accurate diagnosis is microscopic colitis (probably lymphocytic). But he's calling it "diarrhea of unknown origin" until they are able to run a few more tests for me. I am completely blown away, as I have come to accept the Crohn's diagnosis and I think it makes sense based on other symptoms that I've had (extreme fatigue, joint pain, the pain in the RLQ). These other symptoms date back to my teenage years, although they've gotten worse with the current flare I'm having). I agree with the new GI that the biopsy results don't scream Crohn's disease...but I'm just not sure I should be accepting of his suspicion of microscopic colitis. From talking with others on the forum, it doesn't seem like the biopsy results fit with microscopic colitis either. Crohn's really seemed to make sense and fit with all of these other symptoms I've had. The new GI does not know what to think of these other symptoms and wants to refer me on to other specialists for the joint pain and fatigue issues. He wants to treat the GI stuff with Immodium. Has anyone gone through a change in diagnosis? I don't want to get my hopes up, as this GI made it seem as though it should be a relief to be diagnosed with microscopic colitis versus Crohn's. He said I would not have to take medications for the rest of my life--no Humira or Remicade. No need to worry about surgery...

The biopsy results:

"1. Biopsy terminal ileium: Benign mucosa, significant change is not seen.
2-3-4-5-6. Biopsies ascending, transverse, descending, sigmoid colon and rectum: Benign mucosa with mild acute colitis- cryptitis noted. No other changes are seen.
7. Biopsy rectosigmoid polyp: Portions of inflamed granulation tissue noted. No mucosa noted.

Comment: Minimal active colitis with inflamed granulation tissue suggest the possibility of inflammatory bowel disease- Crohn's. Clinical correlation suggested."

The new GI says that he doesn't believe it to be Crohn's because there were no chronic changes- just the acute colitis. I asked him if it were possible if the Crohn's was just caught very early before there was time for chronic changes to be seen to the mucosa, etc. He didn't seem to think so. Has anyone seen biopsy results similar to this? All of labwork has been within normal limits. CT scan was also normal. The first GI said that my colon "didn't look bad" visually.

Thanks for any input!
 
Hi katybuckeye..

Last year i was told "we're 99% sure you have crohns.. here's some leaflets.. and this is claire your new dietician" they then put me on IV steriods followed by 3month course of prednisolone..
my inflammation went down significantly..so did the pain. and my BMs returned to normal after beingon a low residue diet.

I need to state that they based my diagnosis on just symptoms and a CT scan alone

my pain started coming back - just a pin point of pain in LRQ.
so they performed surgery after an ultrasound said my appendix was fine
but during surgery saw my appendix in a mess.. but my bowels looked fine. so my crohns diagnosis was taken away - phew!
Bare in mind.. that i had been on high doses of steroids before the surgery.. so my inflammation had gone

Feb this year colonoscopy was fine. so thought this is great! Im back to normal.
june this year suffered awful big D again with blood an mucous (so much pain)
Sigmoidoscopy found the bleeding.. sealed it off. but unsure what caused it
2nd colonoscopy august 1st . found some inflammation that wasnt due to a bacterial infection.so im still waiting to find out what that inflammation is..

i dont really know what to suggest. but i know how you feel :(
Its not fun to be back and forth on something as serious as crohns

please keep us updated xx
 
Sorry this is frustrating. My son had 2 diagnosis taken away ... so I understand the feelings you have. I do think it is good that doctors are careful with their diagnosis of serious conditions ... they need to be sure. If your current GI is not convinced it is Crohn's yet, how is he trying to treat you? (I am hoping he will at least try some IBD treatment for you.) Is he willing to follow up with additional colonoscopies? Have you discussed a pillcam to ensure there isn't small intestine activity? (or maybe with the CT scan showing normal results they feel itis not needed?)
 
That must be so frustrating. Especially when you thought all you were doing was switching doctors, not having a diagnosis you had dealt with already yanked away. I remember a couple of people on here who were dxed and then had it taken away - and often when they switched doctors if I am remembering correctly. Don't remember names or anything. But it does happen sometimes apparently.

3rd opinion? I don't know what to tell you, honestly. I think I'd seek a tiebreaker opinion.

I suppose being yanked about with a diagnosis is worse than not having one, in some respects.
 
I agree with dannysmom
thats why i had to make it clear that my docs diagnosed a bit too quickly without doing the relevant tests first. but at least the treatment worked :)
 
Oh, and just to be clear, I am not saying you want to have Crohns. Whatever you have, you have. A dx just puts a name on it. I just mean mentally it must be difficult to have come to grips/made sense of having a chronic disease X and then have someone else say, "Oh, no, you don't have this, you have that."
 
This reminds me of Jill's story too. She had a Crohn's diagnosis that was in effect for over a year, then her diagnosis got retracted. Here's her thread:
http://www.crohnsforum.com/showthread.php?t=27374
She hasn't been on the forum in awhile so I'm not sure how she's doing lately or if she got a diagnosis or what. Jill, if you see this - we miss you and are thinking of you! Hope you're doing okay!

KatyBuckeye, I responded to your PM in more detail, so I'll just say here that I hope you can get some firm answers soon and some relief from your symptoms. Hang in there and big hugs!
 
Hi Katy,
I relate! I've been diagnosed and undiagnosed so many times I'm not sure that I could count them all.

Of all the things I would tell you, this is the important thing: BELIEVE in yourself. Keep persevering until you find a doc that is willing to do the homework, do the research, think out of the box and fight for your health. They say Crohn's is hard to diagnose for a reason: IT'S REALLY HARD TO DIAGNOSE.

It's taken 3 yrs of persevering until I found a doctor who was willing to spend several hours with me going through all of my information. I got my diagnosis through a series of blood tests combined with my symptoms: ANA & ASCA. My ANA was mildly positive at 1:160 and my ASCA tested very high positive repeatedly. My biopsies are repeatedly negative. There are 2 types of antibodies that they'll test you for in regards to ASCA, but one of them may differentiate Crohn's from Colitis. That might help your situation, if your biopsies aren't specific. Your rheumatologist should be well-versed in these types of panels and if he/she is not, find another one.

Additional rheumatology panels may also help you differentiate your IBD, one disease from another. Going to different doctors to deal with all aspects of systemic disease will be costly and time consuming for you as it was for me- I don't recommend it.

On the positive side, you have visable signs of the disease (ok, that's not great, but it helps for diagnosing) and if the testing is thorough enough there will likely be some helpful discoveries for you. If you have good insurance you might consider asking for sensitive imaging studies: another colonoscopy (to get another radiologist's interpretation of it) and/or pill cam (it's extra sensitive from your mouth to anus).

Not taking "no" for an answer was the best thing I've ever done for my health. Now that I know I have Crohn's I've found a diet that seems to be working wonderfully - and I'm healthier now than I've been in years. If you want to talk more I'll be glad to. Best of luck to you!
 
Thanks so much for the support. I'm so glad I'm not alone! The second GI is not treating me for IBD. He told me to take over-the-counter immodium, which did not help when the diarrhea first started and it's not helping now. He's on vacation for 4 weeks. In the meantime, I'm getting the slides from my biopsies sent to the new hospital so another pathologist can review them. He is hoping that may clear up the diagnosis. The other option, depending on what I can work out with my insurance, is to try and get to a teritary care center (large academic medical center with specialists just in Crohn's). This is what I would really like to do because I'm only going to feel comfortable with an absolute expert at this point. My managed care insurance is making this very difficult at this point, but I'm not giving up. I'm even considering private pay for a consultation.
 
ArinMelissa said:
Hi Katy,
It's taken 3 yrs of persevering until I found a doctor who was willing to spend several hours with me going through all of my information. I got my diagnosis through a series of blood tests combined with my symptoms: ANA & ASCA. My ANA was mildly positive at 1:160 and my ASCA tested very high positive repeatedly. My biopsies are repeatedly negative. There are 2 types of antibodies that they'll test you for in regards to ASCA, but one of them may differentiate Crohn's from Colitis. That might help your situation, if your biopsies aren't specific. Your rheumatologist should be well-versed in these types of panels and if he/she is not, find another one.
Click to expand...

Thank you for your advice. Was it a rheumatologist that ordered the ANA and ASCA? Does this have anything to do with the Promethius lab testing?
 
Cat, I totally forgot about Jill. And I think that was the person I had in mind when I started that other thread. I hope she's okay.
 
Hi Katy -
Prometheus does include ASCA in their IBD test. ANA is typically ordered by rheumatologists.
Your plan sounds great ... good luck with the extra opinions!
 
Hi Katy,
For some reason I had the most luck initially with rheumatologists ordering the ASCA and ANA panels. I've had 2 prometheus panels that both came back negative. If you get a GI to do it, you might just ask him/her if it includes both ASCAs and/or ANA. Good luck!
 
My road to a Dx was just as hard. The first Dx was hard to get- blood work normal- colonoscopy and Bx not a big deal. Small bowel series shows acute Crohns Ilitis. Took along time to acheive remission. Finally got there and moved to Seattle. Dr was good and I did well. Moved again- landed in Texas new Dr did a colonoscopy-found nothing called off the Crohns Dx. (nice guy- NOT!). So for about 8 yrs my family Dr helps me as much as he can. I can say it was a full year I knew things were getting away from me. Very quickly I ended up in the ER and admitted. Blood work- WBC and ANA (?) were high. Colonoscopy showed left sided colitis and ischemic colitis. (?) Dr said not Crohns. Ok expalin the bleeding and other symptoms. Dr forgot to see me Sat in the hosp. Dr on Sunday ordered a small bowel series. Again didnt have to drink much barium and the Radologist said Did you know you have Crohns? He was suprised at the amount of swelling he was able to see after 1 week on IV steroids. He said it must have been really bad and almost obstucted when I was admitted. The amount of prednisone I was on would have decreased 50% of the swelling in 24-48 hours. I was a full week on the IV at that point.

So- once again I am Dx with Crohns- left sided colitis and Crohns in my lrg colon no longer contained in my sml colon. I am afraid to ever switch Drs again. Although what we are doing now isnt working so well. Entocort not really helping- mostly for the small bowel so if its further into the lrg bowel wont help. Three doses of Remicade so far and still having trouble. I am hoping for remission soon. I am under alot of stress and its not something I can change at the min.

I have to believe brighter days are coming. I know they are- just not fast enough.:Flower::sun::Flower:

I think alot of us know how you feel! I am sorry you are having to deal with this and I hope you find relief soon.


lauren

BTW- fact- every test you have can be normal and you can still have Crohns. Thats why it is so damn hard to get the Dx in the first place. However this turns out for you- fight for the care you need- when 18 Imodium didnt work for me my Dr ( I also worked for the guy) he had to loo deeper.
 
I just wanted to update with my most recent doctor appointment. I was able to get an appointment with a GI in a teritary care center. He is highly specialized and deals only with inflammatory bowel disease. He took a look at the biopsy results and said that based on the biopsy results alone, he would not be able to call it Crohn's or IBD. However, based on the description of my symptoms, in particular the joint pain that I've been experiencing, he has not ruled Crohn's out. He did some more blood work, including the Prometheus testing. He said if the Prometheus comes back positive, he will probably proceed with treating me for Crohn's. If it is negative, he wants to repeat the colonoscopy and biopsy. My other lab tests have all come back within normal limits. The GI prescribed me antibiotics (Cipro and Flagyl) and wants me to take probiotics along with them. I'm hesitant to start the antibiotics because I think frequent antibiotic use is a part of the reason why I'm dealing with all of this (an imbalance of the gut bacteria). My diet has really been helping, so I hate to kill off all of the good bacteria that I've been trying to build up. The other part that the GI is puzzled about is the fact that my GI symptoms have basically resolved. I'm still not having completely normal bowel movements, but I'm not having diarrhea anymore. I'm convinced that this is due to my diet and the supplements, but of course, doctors refuse to believe that diet has anything to do with it. So, I feel like I'm in limbo. It would be wonderful if it turned out not to be IBD, but then what the heck is it? I still don't feel 100%- GI-wise things are much, much better, but I still have unrelenting fatigue and joint pain. And I just don't feel well overall. I haven't been able to return to my usual athletic, fast-paced lifestyle. It is just so frustrating and I keep thinking about what if it isn't IBD...could it be something worse? I'm also afraid that doctors, family, and friends will start to write all this off as "being in my head". It's a tough situation to be in. I'm tentatively hopeful that it isn't IBD, but then it's hard not to know what to call it. I know all of you understand though. Thanks for listening.
 
Tots- I haven't heard anything about Prometheus lately. Do you have an update?

Katy- Your story sounds really similar to mine. I'm having huge success with the SCD diet.
 
Well, I received the Prometheus test results today...not consistent with IBD. I'm just so frustrated!! I think it was easier to deal with when I had a firm diagnosis. There is something that keeps nagging me about the biopsy results. Is it possible to have inflammatory polyps and not have IBD???
 
I feel ya! I've been through several similar situations.
My most trusted doc is 100% sure of my Crohn's diagnosis but I never had anything conclusive from a Prometheus panel either. Or scope. I'd try another specialist- maybe another colonoscopy since part of your problem is that the doc wasn't able to see a "chronic" issue in your gut. I know that's frustrating too but it's sometimes the only way to make progress.
 
Hi.
Sorry to Jump into the thread.
I was in the same boat I had a diagnosis of CD it was taken away from me what ensued was 12 years of pure hell (this is NHS here in the UK btw)
I went unwell at 12 years old by 16 years old I had lost so much weight I was 6ft 4 and basically skin and bone I finally got a diagnosis of CD but was taken away within months.

after years of being shunted around various doctors in wales and stuff I cant even repeat on a forum being a new member I doubt people would even believe it.finally in 1997 I got a diagnosis of Behcets Disease.In my Case the behcets is affecting the bowel more than other areas.So The doctors have been on the treatment plan they would give for Crohns because of the way NHS funding is greared if they say its behcets they dont get funding.For certain drugs like Humira its all the same Anti TNF.

I know quite a few people online been in this situation either told its IBS/IBD and its turned out to be behcets.With behcets I was having terrible GI bleeds losing pints of blood within days the bowel was looking 'normal' it nearly drove us insane tbh.

im sorry if my post doesnt make much sense but when I read stories like this I just feel putting it out there about this might be of help.
 
oathy- That's what's so great about this forum. You know that
what you have to say - you are helping someone. And helping even
one person is with it!

I have never heard of what you have but, I am going to look
It up


Lauren
 
Hi Oathy- Welcome to the forum! Thank you so much for sharing your experience. I also haven't heard of Behcet's, but I'm going to do some research into it. Thank you!
 
Hi all. I just wanted to add another story to the list of people who had an IBD diagnosis changed in case it helps. However, to be up front and honest, I wasn't officially told I had crohn's but rather I was only unofficially diagnosed with crohn's by the nurse practitioner.

After spending months trying to deal with the unofficial diagnosis I finally started to accept it. I was doing good with it and getting healthier again. As much as I didn't want a crohn's diagnosis, it just seemed to make everything in my past (health-wise) make sense. Went to meet with the doctor and they said it's IBS not IBD. Well, I'm not happy with the change and assuming they're right, what explains all the health stuff I've had. Completely ticked off, not getting answers, not getting the right medicine, no energy, poor appetite, and not happy. Knock on wood, they recently took away the wrong medicine they prescribed and it seems to be improving. We'll be having a talk with the Dr at the next visit about IBS vs IBD. I hope that everyone here gets the diagnosis that helps them heal the fastest.

PS. Thanks for this thread. It definitely helped me through the past couple days which have been rough.
 
I'm not exactly part of the undiagnosed club, but I went through a similar experience. With the nature of Crohn's, and it being an illness where things aren't always black & white, it seems to be common for changing doctors to cause us issues.

I grew up in Michigan & was diagnosed at 7 years old. Being so young, I have a hard time remembering what, if any, initial symptoms I had. I know I'd lost some weight, but I don't recall much more. What prompted my diagnosis was the discovery of a peri-rectal fistula. I had been playing outside & fell, & started bleeding pretty bad. Of course my folks rushed me to the ER, thinking it was a rectal bleed, but after it stopped, the fistula was discovered. I was fortunate to be referred to a good GI with the hospital & got diagnosed quickly.

After a few issues with meds & figuring out what worked for me, I spent several years on prednisone & asacol. All was well (or as good as it gets) until I was 13 & we moved to New York. The GI I ended up seeing there wasn't convinced I had Crohn's because the medications were apparently working so well. The theory of misdiagnosis led to him taking me off the asacol, which ended with me in a pretty bad flare, of course. Meds were restarted & once under control, I did fairly well again.

I went through a similar experience relocating from New York to Ohio, but refused to let the Dr. stop my meds. I did the legwork myself to get copies of scans & test results to take to his office to convince him I had Crohn's without the trial & error at my expense.

Now I'm 33 years old. I'm not currently on any medications for Crohn's, but that's because they removed the most problematic areas & the disease hasn't recurred anywhere. But it left me with a permanent colostomy (that was originally supposed to be temporary while a fistula healed) & they completely removed the rectum & diseased tissue. I DARE a doctor to "theorize" I don't have Crohn's now, simply because I'm asymptomatic.
 
oathy said:
Hi.
Sorry to Jump into the thread.
I was in the same boat I had a diagnosis of CD it was taken away from me what ensued was 12 years of pure hell (this is NHS here in the UK btw)
I went unwell at 12 years old by 16 years old I had lost so much weight I was 6ft 4 and basically skin and bone I finally got a diagnosis of CD but was taken away within months.

after years of being shunted around various doctors in wales and stuff I cant even repeat on a forum being a new member I doubt people would even believe it.finally in 1997 I got a diagnosis of Behcets Disease.In my Case the behcets is affecting the bowel more than other areas.So The doctors have been on the treatment plan they would give for Crohns because of the way NHS funding is greared if they say its behcets they dont get funding.For certain drugs like Humira its all the same Anti TNF.

I know quite a few people online been in this situation either told its IBS/IBD and its turned out to be behcets.With behcets I was having terrible GI bleeds losing pints of blood within days the bowel was looking 'normal' it nearly drove us insane tbh.

im sorry if my post doesnt make much sense but when I read stories like this I just feel putting it out there about this might be of help.
Click to expand...

Wow Oathy you are the only other person on this forum that I have found that also have Behcet's Disease. I have an advanced case called neuro-Behcet's since I have 8 tumors in my thalamus. They started me on Remicade and it helped with a lot of the symptoms, the only thing that never stopped was my GI problems. They have now conclusivly with blood work and colonoscopy confirmed that I also have Crohn's. Still waiting on latest biopsies to see if I will need surgery or just try and change my remy from 5 mg every 8 weeks to 10 mg every 4 to try and get a handle on the CD. Since confirmation with blood test they did start me on high dose pred which has helped a little bit. I am currently in hospital of 4 diffrent iv antibiotics fighting a severe colitis and UTI infection. They even have me in limited exposure quarentine.:ywow:
 
I wanted to resurrect this thread and give an update and also ask for some opinions. Per my last post, I'm currently on my 3rd opinion with a GI specialist. This doc isn't convinced that my diagnosis is Crohn's. Everything has come back clear- blood tests, CT scan, MRI. He wants to repeat the colonoscopy and I'm really torn as to whether or not I should go through with it. I've been following a very strict diet (GAPS/Paleo) and as long as I follow the diet, I have no GI issues-- unless I'm very upset or stressed about something and then I may have some loose stools. If I deviate from my safe foods within the diet, I will also have some symptoms. I'm taking low dose naltrexone (not provided by the GI), so I'm not sure about the impact that may be having. I know that the LDN has definitely helped with fatigue and it does help a bit with joint pain. My main issue currently is the joint pain. The severity fluctuates from severe to moderate. I've seen a rheumatologist and she believes that it sounds a lot like IBD-related arthritis or it could be seronegative inflammatory arthritis. She is waiting on the GI doc to make a decision about my diagnosis. I've expressed my anxiety to him about repeating the colonoscopy and he had agreed that it isn't absolutely necessary-- at this point, he feels that it probably is not Crohn's, but he cautioned me that my first colonoscopy was not conducted appropriately, so he can't say that with 100% certainty that it is or not. My main concern is the colonoscopy prep pushing me into another flare and losing all the good bacteria that I've been building up. Any thoughts? Would you go through with it?
 
Good question. I am glad your GI symptoms are mostly under control with diet changes and LDN. Would the rheumi consider trying treatment without a definitive stance on IBD? My son's rheumi wanted us to try Humira for his joint pain. But his joint pain is so intermittent that we did not want to take the risk. Why does the GI feel your last colonoscopy was not done right? (My son's second colonoscopy 1.5 years after his first was exactly the same. But they were able to get to the TI the second time.)
 
I don't think a colonoscopy is supposed to be that risky. I haven't heard of them causing a flare, but I could be wrong. The prep and things are tough on your system, and you may have a messed up digestive system and feel knocked out for a few days after, but it won't cause or worsen a disease like Crohn's (or other autoimmune things). Personally, I wouldn't turn down a test if I'm still feeling ill and seeking answers. A colonoscopy can diagnose and rule out things other than Crohn's.

But it is an invasive procedure, so I can understand your hesitation if you're doubting it's usefulness and if your problems seem located elsewhere. What does the rhematologist suggest to try and confirm a diagnosis for the joint pain if the GI can't or if it's not IBD?

Sorry you've had to put up with all this for so long!
 

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