No signs of Crohn's on colonoscopy yesterday

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ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 6/17/2010 5:40 AM (GMT -7)   
So what the heck is going on with me???  The new dr says it would be very strange to have no signs at all of Crohn's show up if I did in fact have it.  I am still feeling awful with pain after eating and I have lost 13 lb this month.  He is starting to doubt the diagnosis of Crohn's now and says maybe it was something else.  I am so confused!!  I go for CT enterography and if that doesn't show what is going on a pill cam.  Anyone else have a clear colonoscopy when they feel so bad?
Diagnosed w/ Crohn's 2010
Diagnosed w/Hemicrania Continua (variation of migraine disorder)fall 2009
Diagnosed w/bilateral sacroiliitis/possible developing ankylosing spondylitis due to Crohn's 2010
Current meds: Pentasa, prednisone taper back up to 40 mg a day, omeprazole (Prilosec), zonisamide (Zonegran)
 


ZenaWP
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Date Joined Aug 2007
Total Posts : 884
   Posted 6/17/2010 6:50 AM (GMT -7)   
I have never had a colonoscopy that did show anything.  Only the capsule endoscopy showed mine. 

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 6/17/2010 6:57 AM (GMT -7)   
Thanks!  The dr really threw me for a loop when he said that yesterday.  I just want the correct treatment so that I can get better.
Diagnosed w/ Crohn's 2010
Diagnosed w/Hemicrania Continua (variation of migraine disorder)fall 2009
Diagnosed w/bilateral sacroiliitis/possible developing ankylosing spondylitis due to Crohn's 2010
Current meds: Pentasa, prednisone taper back up to 40 mg a day, omeprazole (Prilosec), zonisamide (Zonegran)
 


beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 6/17/2010 11:46 AM (GMT -7)   
I just had a completely clear colonoscopy last month and I have Crohn's.

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 6/17/2010 12:43 PM (GMT -7)   
i too hv had scopes showing no signs of crohns....
i agree pill cam is way better
keep us posted
lyn

Post Edited By Moderator (Nanners) : 6/30/2010 6:57:47 AM (GMT-6)


Becoming undone
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Date Joined Jul 2007
Total Posts : 927
   Posted 6/17/2010 12:53 PM (GMT -7)   
I was clear for most of the time too...my doctor was wondering...but it finally showed up on all my biopsies this last colonoscopy. It was clear for most of the 5 years I was with this Doc (I've had the dx for over a decade, but changed docs) even though I was having major symptoms, even losing blood...oh, and the pill cam didn't show anything either...but it eventually reared it's ugly head...
You are not alone...just wish docs would gather information and publish about us "atypical" cases...make it a whole lot easier...
"The earth laughs in flowers"


ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 6/17/2010 3:35 PM (GMT -7)   
Thanks everybody!  Doctors have a way of making you feel like you are crazy don't they?!  I know it is not all in my head when I can't eat a stupid biscuit without crying for 30 minutes.  I wish sometimes the doctors could just experience that sort of thing to see what we go through.
Diagnosed w/ Crohn's 2010
Diagnosed w/Hemicrania Continua (variation of migraine disorder)fall 2009
Diagnosed w/bilateral sacroiliitis/possible developing ankylosing spondylitis due to Crohn's 2010
Current meds: Pentasa, prednisone taper back up to 40 mg a day, omeprazole (Prilosec), zonisamide (Zonegran)
 


Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 6/17/2010 10:21 PM (GMT -7)   
Most of my scopes have been normal looking, though biopsies have shown inflammation, and a couple times, even the biopsies came back normal. Did they do biopsies?

Speaking of them knowing what we go through...the reason I LOVE my surgeon is that he has colitis and has been through a lot of tests and stuff I've had to do. He's so nice and understanding because of it.

Sometimes I start feeling crazy...like if my scope in a couple weeks looks completely normal, knowing how I've been feeling lately. I think we all go through that at some point.
Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 6/18/2010 10:31 AM (GMT -7)   
My current GI has Crohn's himself and he has never doubted my dx, even though some other GIs have.  He wouldn't win a Mr. Congeniality contest, but he knows what he's talking about, so I stay with him.  I wish more drs understood the way he does.

Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 6/18/2010 10:38 AM (GMT -7)   
I have had multiple scopes - half show colitis, half have been completely clear. It appears to be a crapshoot, no pun intended.
30/f
chronic active colitis/unspecified IBD - still awaiting a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Remicade - 1 infusion so far
Darvocet or Lortab as needed for pain


Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 6/18/2010 12:58 PM (GMT -7)   
Ask your g.i. for a Prometheus test, it's done through your bloodwork.  Expect the office/lab to have to order the kit.

It may help to get you a diagnosis.

ALgirl
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 6/18/2010 1:28 PM (GMT -7)   
Thanks!  Yes, he did do biopsies and I will get the results of those in a week or so.  My biopsies have always just shown " acute inflammation" in the past, which this doctor says isn't enough to definitely say Crohn's.  Whatever is causing inflammation I want it stopped, I don't care what it is called.  This doctor does seem to be much more understanding than my last GI at least, I will give him that.  I am just grumpy from feeling so bad.  Thanks to everyone for being so helpful.  I am hopeful that I will get better treatment here with this doctor because it is at the University hospital and I will be a case that the doctor presents to the board soon. 
Diagnosed w/ Crohn's 2010
Diagnosed w/Hemicrania Continua (variation of migraine disorder)fall 2009
Diagnosed w/bilateral sacroiliitis/possible developing ankylosing spondylitis due to Crohn's 2010
Current meds: Pentasa, prednisone taper back up to 40 mg a day, omeprazole (Prilosec), zonisamide (Zonegran)
 


Joie1
Regular Member


Date Joined Oct 2008
Total Posts : 376
   Posted 6/29/2010 6:09 PM (GMT -7)   
I never showed the signs of it for some reason. Then when I had to have emergency surgery, they looked at the resected bowel and surprise! It's CROHNS. Idgits. Its something about having to be in active flare and I've heard the pill cam works better for people with sick ileum then anything else.
29/f
Allergies and Asthma my whole life: Benadryl
Depression and PTSD after surgeries and illness of 2003 (turned out to be Crohns)
Crohns Dx'd: February 2008: Pentasa, Hyoscyamine
Fibromyalgia Dx'd: July 21, 2009: Lyrica, Cymbalta, Hydrocodone, Prenatal Vitamin


leysa
Regular Member


Date Joined Oct 2009
Total Posts : 111
   Posted 6/29/2010 7:03 PM (GMT -7)   
I had a completely clear scope a week after being in the hospital with a horrible flare. So frustrating.
30/f
chronic active colitis/unspecified IBD - still awaiting a PillCam
Lialda 1.2 mg 2x/day
Prednisone 10 mg taper in progress
Remicade - 2 infusions so far
Darvocet or Lortab as needed for pain


dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 6/29/2010 9:39 PM (GMT -7)   
Had you been treated before you went for the colonoscopy? This has happened to me before, after the doc increased the medication, he sent me for tests and of coarse nothing showed up because the inflammation was treated. If you have damage from crohn's, then it should show up even if the inflammation is no longer present? I've also been on the other side where I was feeling better and the crohn's has shown up, bowel damage is a good indicator of the disease going on inside.


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/30/2010 6:55 AM (GMT -7)   
I had virtually every test including promethus. As I have small bowel issues they all came back inconclusive. Prometheus said "no crohns" Then I had pill cam and the crohns was so easy to see I could diagnos. I am not making this up I could when the doc should me how to interpret the pictures I could see all the ulcers. Please consider a pill cam.
Also, I am with you on the head games I play with myself. Is this all in my head? Does my gut really hurt this bad? I am not sure why this dang thing makes me play head games, but even hearing that others struggle with this somehow makes me feel better

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


angela lloyd
New Member


Date Joined May 2013
Total Posts : 7
   Posted 5/25/2013 4:00 AM (GMT -7)   
I have been ill for 16 years and, I had a dx of diverticular disease 16 years ago. then about 4 years about i had a dx of crohns, but now they are telling me that its not crohns and the dx was not conclusive and, that i may have ibs, but you dont bleed with ibs and, when i have it bad i bleed. i have had all the test, sigmoidoscopy, barium enema, colonoscopy, but nothing showed up, so they are scratching their heads now and keep telling me ibs and, i know its not ibs and, they just dont seem to be that interested. i have diarrhoea everyday, sometime on the odd occassion i get constipated, but its not very often, but although i have diarrhoea everyday, i dont actually lose any weight, im not anaemic, but i do get boils in my groin and, i get cold sores on my mouth. i have to watch everything that i eat, i cant eat any fibre or fruit that has skin or pips, no spicy food, unless i make it myself. i cannot drink milk either or any diary products, although i do sometimes because i do not get any calcium intake, but if i eat cheese or drink milk it just goes straight through me. i am just not sure what to do now, when i am in hospital they treat me like i am some freak and i was once called a liar.

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 5/25/2013 6:08 AM (GMT -7)   
Hi Angela
IBS is not a diagnosis, it is a description of symptoms. It really is of no value, but for folks who do not understand, it gets lazy docs off the hook, of doing the work to get a proper diagnosis.
You either need to push your current doc or get a new one.

My doc gave me a dx of IBS and I told him, you mean you do not yet know what is causing my symptoms and he agreed. I than said what tests are we going to run to figure this out. I had a pill cam, hydrogen breath (yes I have/had SIBO), parasites (no), and a bunch of others. I am going for my second colonoscopy in a couple of weeks.

I refuse to let the doc off the hook with a useless IBS dx. I am lucky as he knows it is a cop out and of no value also, and he is more than willing to work with me to get to the bottom of this.

healing thoughts

dave
Dx - Crohn's, SIBO, Carbohydrate Malabsorption, Slow Small Bowel Motility

Diet - SCD, Low FodMap, Low Carb

Current Drugs - Pentasa (3 x 500), LDN (4.5), Amitriptyline (25),

Past Drugs - Xifaxan (Rifaximin), Prednosone, Entocort, Cipro

Supplements - Vit D and B complex, fish oil and SCD multivitamin

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/25/2013 8:10 PM (GMT -7)   
IBS is a syndrome and it does exist...I have a half sister and my daughter that have IBS and I also have it along with my CD...I don't think it's a cop-out DX on a good GI's part...Suspected CD patients need to get upper GI tests done, not just colonoscopies since they only go up so far and CD can lurk around all over the small intestines and won't be detected by a colonoscopy.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 5/26/2013 5:19 AM (GMT -7)   
Pb4 please know I believe we have much in common with our thinking re this DD and how to control it, however I must respectfully disagree with your position on IBS. It is my believe that if a diagnosis does not include root cause and treatment for the root cause, and it is useless.

Treatment for IBS is frequently avoid dairy (lactose intolerance), more/less fiber stomach, acid issues, avoid gluten - gluten intolerance,.... If there is any treatment recommendations it is usually best guess not supported by proper testing. Too often food intolerances, SIBO and other treatable conditions are called IBS which are not treated or treated through best guess or symptom controlling drugs not root cause elimination.

If a doc said to me, you have IBS, avoid milk/grains/gluten or what ever, I would say "why", the only explanation could be "because many have intolerances", I would insist on a test to know. I honestly think many folks suffer from really bad gut issues, labeled IBS, because docs are way too lax in their approach in getting to root cause.

If root cause is understood, then it will not be called IBS, as IBS does not specify a root cause.

I am responding not to argue for arguments sake, but to help and support fellow Crohnies, who also have other gut issues, currently called IBS, to push for more testing, to get to root cause and treatment.

healing thoughts
Dave
Dx - Crohn's, Diverticulitis, SIBO, Carbohydrate Malabsorption, Slow Small Bowel Motility

Diet - SCD, Low FodMap, Low Carb

Current Drugs - Pentasa (3 x 500), LDN (4.5), Amitriptyline (25),

Past Drugs - Xifaxan (Rifaximin), Prednosone, Entocort, Cipro

Supplements - Vit D and B complex, fish oil and SCD multivitamin

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 5/26/2013 7:01 AM (GMT -7)   
Hi Dave,
I respectfully disagree with you. IBS refers to the function of the bowels being abnormal as opposed to disease activity. I have Crohn's in my ileum , but I have slow motility in my colon. I have had this since childhood and struggle with constipation. I might be slightly lactose intolerant but food is not my primary issue. I just was born with a sluggish colon. IBS can be very painful. I do agree that there are many folks for whom food intolerances are unidentified, and we need a better medical way of diagnosing. For me, I can't identify a Crohn's flare based on symptoms, because it can easily be my IBS. IBS is very real...it causes a lot of pain, but does not cause damage to the intestines like Crohn's and UC.
54 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have GERD and IBS, gastroparesis (Dx. with c.difficile 1/12- now resolved)

MEDS: Pentasa- 6 500mg pills per day, Dexilant, Metamucil, colace, miralax as needed, Culturelle probiotics .25 xanax for sleep prn

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4101
   Posted 5/26/2013 7:04 AM (GMT -7)   
Another thought.... It amazes me that I can have Crohn's confirmed by biopsy, pill cam and Prometheus, but if I have a clean colonoscopy, but GI scratches his head and says maybe we mis-diagnosed you....I thought it was just my GI not knowing enough about the remitting/relapsing nature of Crohn's, but from reading this thread it looks like a common issue.....so frustrating!!!!
54 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Also have GERD and IBS, gastroparesis (Dx. with c.difficile 1/12- now resolved)

MEDS: Pentasa- 6 500mg pills per day, Dexilant, Metamucil, colace, miralax as needed, Culturelle probiotics .25 xanax for sleep prn

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/26/2013 11:08 AM (GMT -7)   
Hi David...It's been discovered that IBS is linked to gut bacteria definitively....check out this link
 
 
And this link from the CCFA; IBS and IBD two very different disorders
 
http://www.ccfa.org/resources/ibs-and-ibd-two-very.html
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Post Edited (pb4) : 5/26/2013 12:13:19 PM (GMT-6)


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 5/27/2013 11:38 AM (GMT -7)   
Hey PB

I hope I did not come across in a way that communicated that I thought IBS was not real. Sorry if I did.

I know folks who are currently diagnosed with IBS can have terrible symptoms. I know some folks with a IBS dx can have it worse than some crohns folks. I was not trying to trivialize the very real pain and impact. I both sympathize and empathize.

What I was saying is that IBS does not identify root cause. I had IBS for years, almost 35 years in fact. Until I got a good doc, who did enough tests to properly diagnose Crohns, I know folks who had IBS, until they discovered they were glutton intolerant. From both my and my GI's perspective, IBS is a placeholder that describes symptoms, waiting to figure out cause.

I believe there are many causes. Some are known and are just not identified for the individual, like Glutton intolerance, or in my case Crohn's or in your article SIBO. I also believe there are other causes yet to be identified. Every time we identify another thing that causes IBS symptoms the number of IBS folks goes down and the number of the new diagnosis goes up.

I just read your article, thank you. I am always looking to read and learn. In fact the article you quote supports my position.

"They found that more than a third of the patients with IBS had SIBO, compared with only 10% of those without IBS"

This makes sense. about 1/3 of the folks with IBS symptoms, have a diagnosis of SIBO. You treat SIBO with antibiotics and Low FodMap diet. This article does not say anything about the other 2/3s of folks or how to treat them. The title of the article is misleading and honestly a bit silly. This article would have been much clearer if it said something like.

Everyone who has IBS symptoms should get tested for SIBO. Our research shows that as many as 1/3 of folks might benefit from SIBO testing and treatment If you have SIBO, you no longer have IBS. The symptoms are not a mystery.

One last thing. I had the hydrogen breath test. I tested positive for SIBO. I took 2 separate rounds of the antibiotic. It did not help me a bit. Darn! I am still doing Low FodMap

Take care and I know you will keep researching and learning along with me. Thanks for sharing

dave
Dx - Crohn's, Diverticulitis, SIBO, Carbohydrate Malabsorption, Slow Small Bowel Motility

Diet - SCD, Low FodMap, Low Carb

Current Drugs - Pentasa (3 x 500), LDN (4.5), Amitriptyline (25),

Past Drugs - Xifaxan (Rifaximin), Prednosone, Entocort, Cipro

Supplements - Vit D and B complex, fish oil and SCD multivitamin

Terry B
New Member


Date Joined Nov 2012
Total Posts : 16
   Posted 5/27/2013 12:21 PM (GMT -7)   
It wasn't until I had a barium test, blood work, ct scan and a second colonoscopy did they diagnose me with crohn's.
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