How are most crohns patients diagnosed?

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Badstomach
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/16/2017 11:18 PM (GMT -6)   
I ask this because for the past month or so I have been reading about people that have crohns yet they have clear colonoscopy and endoscopy biopsy results. Do blood test usually signal any of this?So far I have personally done 2 endoscopies,CT barium scan,and bloodwork more than a few times.My blood work shows no signs of crohns at all and endoscopy seemed clear. However I still have bad constipation,terrible skin rash on face,and terrible abdominal pains as well as nausea in the morning. I know something is definately wrong here,but I am worried that I will get a colonoscopy only to still have no diagnosis.


I guess what I want to know is how most of you finally got diagnosed. I haven't been able to really be at peace since I started having GI problems. I wouldn't wish this on anyone. Seems like you constantly have to argue with doctors and nag for appointments to get things moving.I wish this kind of thing would get taken a bit more seriously by doctors as it is IMO a serious medical condition

Post Edited (Badstomach) : 8/16/2017 11:44:08 PM (GMT-6)


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9766
   Posted 8/17/2017 7:05 AM (GMT -6)   
Badstomach said...
I ask this because for the past month or so I have been reading about people that have crohns yet they have clear colonoscopy and endoscopy biopsy results.


Judging from people's stories on HW, some doctors seem to think if your tests are clear now that means you can't have Crohn's, which is absolute nonsense if your scopes showed Crohn's in the past. If you really do have Crohn's, clear tests signify that you are in remission, not that you never had Crohn's to begin with.

Most Crohn's patients are diagnosed with with a colonoscopy. Other conditions will usually have been ruled out first, e.g. coeliac disease, infectious causes of diarrhoea. Crohn's usually affects the terminal ileum and so a colonoscopy will find it. But if the Crohn's is higher up in the small bowel, beyond the reach of a colonoscope, then something like an MRI scan or pillcam is needed to find it.

You don't mention having had a colonoscopy, so get one booked ASAP because that is the only way you can find out. Upper endoscopies are almost completely useless for diagnosing Crohn's, since they can only go as far down as the duodenum - and it's rare for Crohn's to affect the stomach or duodenum. The guff about it being able to occur anywhere in the GI tract is true, but it far prefers to hang out in the terminal ileum and colon.

I was diagnosed via colonsocopy and small bowel barium follow-through. (The latter test has largely been replaced by MRI small bowel scans, but I am talking 17 years ago here.) Before I had those I had blood and stool tests - the latter would have been to rule out pathogenic causes of diarrhoea, such as c. diff. I was 'lucky' in the sense I got diagnosed first time and didn't have to spend years in the no diagnosis wilderness.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/17/2017 7:26 AM (GMT -6)   
I too was dx'd via colonoscopy with biopsy's. The biopsy results is what the drs go by, even if the usual visual signs show up inside. Many of us use the term clear after a scope if we are in remission. A stand alone blood test is not used to give a dx.

I can't remember & may be confusing you with someone else, but didn't you have duodenal ulcers that was confirmed with an endoscopy? If you are this member, a repeat endoscopy showed the ulcers healed after a course of antibiotics. I read so much here at HW, its too hard for me to keep it all straight, lol.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 296
   Posted 8/17/2017 8:10 AM (GMT -6)   
The Best Choice: Full and complete colonoscopy reaching into terminal ileum with multiple biopsies is probably the best tool. Second Best Choice: Latest CT Scan technology can be useful for small intestine Crohn's disease diagnosis.

Do not rely on Flexible Sigmoidoscopy or Blood Test. They are not useful in initial diagnosis.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.

Badstomach
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/17/2017 11:04 AM (GMT -6)   
straydog said...
I too was dx'd via colonoscopy with biopsy's. The biopsy results is what the drs go by, even if the usual visual signs show up inside. Many of us use the term clear after a scope if we are in remission. A stand alone blood test is not used to give a dx.

I can't remember & may be confusing you with someone else, but didn't you have duodenal ulcers that was confirmed with an endoscopy? If you are this member, a repeat endoscopy showed the ulcers healed after a course of antibiotics. I read so much here at HW, its too hard for me to keep it all straight, lol.

Take care.



Yeah thats me haha. I never took antibiotics,i was given protonix for acid reduction and oondasteron for the nausea. I also had a clear CT barium scan,honestly I don't really want to get a colonoscopy but if that's how it has to be then so be it.I don't know if a possible lactose intolerance has been taken into consideration.

I appreciate everyone's help,just don't know how to qote multiple people.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/17/2017 12:09 PM (GMT -6)   
Ha, ha, Badstomach, I got your situation half right. Without a scope with biopsy's you are not going to know. One way to see is you are lactose intolerant is to stay away from all dairy & see what happens.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 951
   Posted 8/17/2017 12:53 PM (GMT -6)   
yes, the colonoscopy is the only thing that will give you a definitive answer. Colonoscopies are unpleasant but they aren't the worst thing in the world.

jdiane
Veteran Member


Date Joined Jan 2003
Total Posts : 1148
   Posted 8/18/2017 11:07 AM (GMT -6)   
Emergency appendectomy. I don't suggest this method smile

Hedgehogs6
Regular Member


Date Joined Mar 2017
Total Posts : 61
   Posted 8/19/2017 11:46 AM (GMT -6)   
I've been told colonoscpoy is first choice but my biopsies didn't show any evidence of crohns. Although I did have inflammation in small bowel which they couldn't reach so ended up having MRI month's later which was normal even though my calproctecin was 6000 and 2 months after that it was less than 15 and a few months after that 212 yet I still haven't been diagnosed. I wld suggest to anyone to ensure you have MRI "if needed" wen you have symptoms otherwise it will come bk normal. I'm at a loss. Maybe MRI is better

Badstomach
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/21/2017 4:17 PM (GMT -6)   
If colonoscopy and pill endoscopy come back clean,does that mean I can't have crohns?

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/21/2017 4:27 PM (GMT -6)   
Yes, you need to be looking for a different cause of your symptoms.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Malshay
Regular Member


Date Joined Jan 2012
Total Posts : 51
   Posted 8/22/2017 8:05 AM (GMT -6)   
I had no sign of Crohn's by way of colonoscopy. I had a small bowel follow-through that diagnosed me with it.

Malinda
Malinda
Dx Crohn's 2012 current meds: Lialda, Prednisone taper, Aspirin, Xanax

Be Yourself; Everyone Else Is Taken

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/22/2017 11:16 AM (GMT -6)   
The pill cam will show the small bowel. When doing a colonoscopy the dr cannot see all of the small bowel, this is where a pill cam can help. I had 2 small bowel follow through that showed nothing. You can see from everyone here tests will vary. However, the majority here will tell you colonoscopy with the biopsy's.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Badstomach
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/24/2017 4:22 AM (GMT -6)   
Got a colonoscopy scheduled for tomorrow. Honestly, I am absolutely terrified. Ive read some horror stories about ruptured colons.I don't know if it's even a good thing if my colonoscopy comes back clean. Hopefully everything will work out.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/24/2017 6:58 AM (GMT -6)   
Badstomach, plenty of us on here have scopes done regularly without anything like that. Understand this, by law they are required to list any potential risk, its called covering their *** for insurance reasons. Stop the reading of horror stories all that is doing is kicking your anxiety into high gear. The worst part about a scope is the prep, the actual test is no big deal. You will be fine.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 951
   Posted 8/24/2017 8:09 AM (GMT -6)   
Please listen to straydog on this! I've had 3 colonoscopies in the last year alone and 1 endoscopy. It is not as bad as these horror stories would have you believe. I even woke up briefly during my last one. Absolutely no pain! Of course everyone is different but the vast majority of patients do well especially if you do not have any other major health issues that might complicate it and you've made sure you are going to a reputable doctor/ endoscopy clinic/hospital. Makes sure you stay hydrated!

Badstomach
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/25/2017 11:52 AM (GMT -6)   
Just had my first colonoscopy,they doctor did not see anything related to crohns/uc in the visual scope,I am currently waiting for biopsies. What percentage of crohns patients are diagnosed via colonoscopy? I dont feel relieved that the doctor didn't see anything because I have read about crohns patients that have clear endoscopies and clear colonoscopies,how likely is it to have crohns with a clean endo/colonoscopy?

Before I got sick,I could pass a bowel movement a few times a day in about 10-15 seconds,now I sit at the toilet for atleast 5 minutes ever since I got sick and I have to strain extremely hard to be able to go to the bathroom. What could possibly be happening?

The specialist pretty much told me to wait it out and see if it gets worse. I find it hard to believe that I am supposed to just wait until something processes further.


My constipation and yellow colored stool are very very unusual for me,I can't believe that out of nowhere from one day to the next my entire digestive system changed how it processed food. I don't know what to do anymore,any advice is greatly appreciated.

Anyways,does anyone here have any more recommendations? I am trying to push for a pill endoscopy but the doctor is trying to make me wait.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/25/2017 12:15 PM (GMT -6)   
As long as the biopsy's come back clean & based on the visual I think you should be very thankful you do not have IBD of any kind. In all honesty considering the tests that you have had done to date, the dr may not do the pill cam & your insurance may not pay for it.

Sitting on the toilet straining to have a BM is going to possibly lead to hemorrhoids. Once again, get on a stool softner to help with this. If you can handle prune juice, drink a small amount of it to help getting things moving. Constipation does not mean you have IBD.

I don't want to sound harsh, but I know you have some anxiety issues going on, perhaps you need to work on getting a handle on the anxiety after you get the biopsy report back. I know you have done some cruising on the internet looking up symptoms. The problem with that is so many symptoms mimic other illnesses & conditions. Dr. Google is rarely right. The net is great if a person has a diagnosis & is learning about their condition.

For now, all I can say is I do hope the biopsy report comes back clear, believe me you don't want to crohns or UC. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9766
   Posted 8/25/2017 1:37 PM (GMT -6)   
You need to realise that Crohn's is a rather rare disease and the chances of you having it at this point are remote, to say the least. Constipation, on the other hand, is as common as anything. I don't know what your diet is like, but make sure you are eating plenty of fibre and drinking plenty of water. A daily stool softener (e.g. Miralax) is excellent for softening up stool and making it easier to pass.

If the biopsies come back clear - and I suspect they will - then forget about Crohn's. Literally millions of people have digestive issues without having Crohn's or UC. Try to treat the digestive issues without getting hung up over a Crohn's diagnosis. It's not always easy, but if you can start off by alleviating the constipation I wouldn't be surprised if that also helped your abdominal pain and nausea. If you need more help with digestive issues we can always try to help you - but we can't give you a diagnosis that simply doesn't exist.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 951
   Posted 8/25/2017 2:53 PM (GMT -6)   
Constipation is very very rarely a symptom of crohns. When itit's usually a symptom of a complication that occurs after a while of untreated disease, you would have had vastly more intense symptoms leading up to it and all of this would have been found on one of the tests you had.

You can try increasing your fiber intake. Prune juice is amazing for this. You can also try a probiotic in case your bowel changes are related to something throwing off your microbiome. Constipation is one of the leading causes people seek out GI help

Badstomach
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/27/2017 9:55 AM (GMT -6)   
I don't know guys,personally I have a gut feeling that something is wrong with me. I went from passing quality stool without straining in 10-30 seconds to 5-10 mins constipated every day. My stool is literally yellow and sometimes has a few black specs on it. I have been reading about parasites and I have been considering taking Diatomaceous Earth,there is just no way I magically got an ulcer and constipation/yellow stools out of nowhere. Maybe I don't have crohns,but I feel like I definately have something going on in my body. I am going to try to get tested for lupus just to make sure everything is dandy. I am at a loss at what to do here,I always took my life for granted unfortunately so this is a really rude wake up call. I appreciate the feedback.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9766
   Posted 8/27/2017 11:40 AM (GMT -6)   
It does suck when things that we previous took for granted go wrong. When I got Crohn's I didn't take it seriously at first (or even really believe the diagnosis). I just had 1-2 loose stools a day; it was so mild it was ridiculous. I would kill to just be able to go back to those early days, let alone a pre-Crohn's diagnosis!

When the constipation started was there anything else going on in your life at all? A change of scene, diet, stress levels, etc. which might have precipitated a change in your bowels? Also from the sounds of it, it sounds like this is the first time you've ever had anything like this, but I'm just gonna make sure: is it?

Also, did your blood tests rule out liver, gallbladder and pancreas issues? Not sure if you had a full blood count done or not.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 14812
   Posted 8/27/2017 1:21 PM (GMT -6)   
The duodenal ulcer did not just appear out of no where. It doesn't work that way. It was brewing in there for quite some time before the symptoms appeared. Stomach acids & gastric juices along with many other things can cause one. The good news is your 2nd endo scope showed it to be healed. Any time the gi tract gets out of synch including an ulcer it can take months for things to go back to normal.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 951
   Posted 8/27/2017 1:30 PM (GMT -6)   
You may have had silent issues with stomach acid for a while. Are you still taking the PPI? Medications can throw off the rest of the system but they do a lot to help the original problem. I hope for you that you use this as a wake up call and that it doesn't come with any of the long term negative effects of illness. what is your diet like? were your liver and gallbladder checked? they would cause the changes you describe

Post Edited (Labradorite) : 8/27/2017 1:34:12 PM (GMT-6)


Badstomach
Regular Member


Date Joined Jul 2017
Total Posts : 21
   Posted 8/27/2017 7:52 PM (GMT -6)   
@Nicecupoftea - My blood test for liver seem to be okay although I may go in and get retested. I had a slightly high CRP like 1.2 or something like that,I have never had gastro issues before this but like I said I am worried I may have a parasite. Nothing changed,diet was the same and out of nowhere I started having constipation and odd colored stools.

@Labradorite @straydog I havent taken the PPI for two days,I am starting to suspect that I may have parasites because I find the black spots on my stool odd. Worried I may have lupus aswell.
New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Tuesday, September 19, 2017 6:32 PM (GMT -6)
There are a total of 2,870,553 posts in 315,014 threads.
View Active Threads


Who's Online
This forum has 156514 registered members. Please welcome our newest member, HavingFunYet?.
453 Guest(s), 16 Registered Member(s) are currently online.  Details
goshawk, sparkleplenty, Foxy-loxy, RickTrin, Evolution52984, JNF, HavingFunYet?, Girlie, Sherrine, Oldskol_d, AZ Guy, ddyss, Aerose91, Stewvlle12, nonalisa, Tall Allen


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer