Number of Colonoscopies before diagnosis?

[kayaker4157]

Hi everyone?
I'm just wondering how many colonoscopies people have had before getting a diagnosis? The reason I ask, is my doc wants to do another on Tuesday, which will be my 3rd in 16 months! I'm not sure if I should go ahead with it or not.

Each time the biopsies have shown chronic deep tissue inflammation in the ileum and last time there were ulcerations in my ileum that had developed since the 1st time. I have been telling them the pain is just getting worse this whole time. They even did surgery to take my appendix out and that didn't stop my pain. They say that I"m not fitting a "classic" crohn's case since I don't have D all the time (alternate between D and Constipation) and my blood test inflammation markers and small bowel follow through x ray testing were negative. A pill cam showed gastritis and inflammation in small bowel.

I also had uveitis start in my right eye during these past 16 months after never previously having any eye issues. After 3 uveitis flare ups, that finally seems to be under control, yet the LRQ pain has been unrelenting, disrupting work, sleep and anything else I try to do. I've tried acupuncture, yoga, modifying my diet, and every pain and antibiotic meds they have prescribed, but nothing helps it.

I guess I'm not understanding why the results from the last 2 colonoscopies in the last 16 months, my constant pain, nauseousness, and unpredictable BMs aren't enough to make a diagnosis and start treatment to try and resolve my pain? I responded a trial of Entorcort (that's all that has seemed to somewhat help all this time), but the minute i'm off it, pain skyrockets again. Any thoughts would be greatly appreciated. Thank you. Anne

 

[Jennifer]

Hi and welcome to the forum!

You don't have to have diarrhea to have Crohn's disease. There are a few people on here who tend to have constipation instead or have normal BMs. I don't know what else you could have other than Crohn's because that's what it sounds like to me. Any chance you could get a second opinion? I'd keep the appointment with your current GI but I'd still look for another one if possible. Sometimes it takes a while to find a good GI that knows what they are doing and who cares about their patients.

Having 3 colonoscopies in 16 months doesn't sound outrageous since its a good idea to have one once a year during a flare but I'm sure it feels like they are getting nowhere with no diagnosis yet. I had every test under the sun done before my diagnosis but that was twenty years ago and I was a kid and the first person in that area to get Crohn's but even with all that, it took them about 2 months to diagnose me. I think I might have had 2 colonoscopies done during that time by two different doctors.

Do you know what the inflammation number was for your blood test?

 

[Rebecca85]

Only the one for me, they were looking to confirm rather than diagnose Crohn's, so they took biopsies from my ulcers and inflamed areas and they came back positive for Crohn's. But I don't have d much- occasional loose stools if something doesn't agree- and in hospital being diagnosed I didn't go for 5 days! And my problems are in the ileum too.

 

[littlemissh]

Not everyone has raised inflammatory markers in a flare. Not quite sure why not but appears to be very common even when have very active disease endoscopically.

Sounds like a similar story to mine. I still have no 'tissue diagnosis' as my affected are is deep in my small bowel seen on pill cam. They are treating me as crohns as it showed narrowing etc and the pill cam was delayed for more than 2 hours there so much of the rest of my small bowel wasn't seen.
They may do a double balloon entersocopy of your small bowel if it was inflamed..they can get biopsies then from there then but very few centres can do this as very specialised. ( only 2 centres in the UK)

 

[ErikaHouston]

I had 3 in 2 months by the same Dr. before being diagnosed. I agree that a second opinion with an IBD specialist is a good idea.

I've never had diarrhea, pain or any cramping and I have Crohn's (just 3 major bleeds :yfaint.

Good luck!

 

[kayaker4157]

Colonoscopies

Thank you all for your responses. They never told me my inflammation numbers other than they were "within normal ranges."

I had another really bad flare/attack again at 4AM last night, so I have now pretty much decided that I will go ahead with Tuesday's 'scope yet again. Just really want to know what keeps causing these extreme attacks and the constant pain.

 

[Sandy]

It took a year or two to get my first diagnosis back in the mid-60's, and that was ulcerative colitis. It wasn't till about 14 years later that I got a revised diagnosis of Crohn's disease. Of course, medicine has changed since then, but one thing seems certain: inflammatory bowel disease --and autoimmune disease in general -- is an incredibly complex process that we don't fully understand. So I can understand the difficulties in diagnosing. And it can take a while to find the right combination of meds/diet/phase of the moon to relieve the symptoms.

One major complication is that the disease can show up just about anywhere in the GI tract -- and if they didn't biopsy the right place, then they won't get a positive result.

For you though, it must be incredibly frustrating. One clue is that Entocort seemed to work. Perhaps you're coming off it too fast. But if you were on the lowest dosage, that may be a problem. Is there some way you can taper off it? Steroids do NOT like to be tapered too fast!

BTW, in the past, I've had both diarrhea and constipation at the exact same time.

Best wishes,
Sandy


Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

 

[Sandy]

Forgot to mention, I'm on the active ingredient of Entocort, budesonide, and it's helped me tremendously. But the side effects can be lousy. (See my thread, "budesonide/entocort and depression").

Sandy

 

[outlier]

Hi welcome.
I have no D as well. Crohn's was only suspect because of my uvitis, canker sores and aniema. I am all about the exterintestalness. I was at the GI for heartburn and he took it up as a personal challenge to see if he could figure out my uvitis. I only need one colonoscopy, the found ulcerations all over the place, and minor to moderate inflammation.

Have you asked them what will convince them that's crohn's or something else? Get your eye doc in as a bully to find a cause, play that angle, maybe? I like having them fight for me for all sorts of things.

It always interesting that as long as my eyes are flaring no doctor every questions if I have inflammation or not because they can see it, even if a blood test is normal.

Good luck!!!