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Crohns and biopsies

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Crohn's Disease
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Posted 11/28/2011 3:35 PM (GMT 0)

I have had 3 colonoscopies and no one has done a terminal ileum biopsy.

Colonoscopy #1- no biopsies at all, declared normal based on endoscopic appearance

Colonoscopy #2- did rectal biopsies because he said that the rectum is ONE place you can be normal in appearance

but biopsies will show inflammation.

Colonoscopy # 3- this is the gi that ended up treating me with pentasa based on a trial of medication. He told me he would biopsy the terminal ileum and ended up only doing 3 biopies of my colon.  He said that the pill camera would probably not be helpful

Colonoscopy #4 - coming up in a few weeks. This new gi says he WILL biopsy the terminal ileum because "small intestinal crohns is very rare without some involvement of the terminal ileum".

My question is:  If crohns can be only at the microscopic level and can be patchy isn't it quite possible that even 3 biopsies throughout the colon would miss it, as would rectal biopsies if I didn't have it in my rectum. I have heard of people with crohns only other areas of the Small intestine,  or only in the stomach etc.

All I can hope for at this point is a positive biopsy in the terminal ileum as its been 5 years and this area has never been biopsied. BUT I've been treated for 5 years so if there is no inflammation does that rule out crohns? I don't think so. It could mean that I had it mild and have been successfully treated (I know, not cured)  I have lots of questions for this new gi. If there is inflammation I would say that means my treatment has not been that successful. Sounds like a no win situation to me.  A few years ago I stopped trying to find out what is wrong and just want to feel better, whatever that takes. Sounds like I'm back to the beginning again.  

Posted 11/28/2011 3:39 PM (GMT 0)
Well I would go thru with this scope and see what the biopsies show. I still think a pill cam is called for in your case, as you are having the symptoms but not getting the answers to whats going on. Many members have gone thru multiple tests without any results, and then have a pill cam and finally get their diagnosis. Hope you find some answers soon. Hugs!
Posted 11/28/2011 3:48 PM (GMT 0)
This last GI sounds like he has a few more light bulbs in his chandleir than the others. That is hopeful.

I woud push, Push, PUSH for the Pill Endoscopy. Crohn's does NOT always stirke the TI, Crohn's does NOT always strike in other than the small intestine.

Any you are right. Crohn's has been proven to "skip" so it would NOT be impossible or even improbable that biopsies taken might have missed microscopic lesions.
Posted 11/28/2011 3:48 PM (GMT 0)
Hi Nanners:

Thanks for your advice.   I have to go through with the colonoscopy because this new gi definitely won't agree to treat me if I don't. He hasn't said that but I'm sure that's the case.  And it is warranted as I'm due for one (and behind schedule according to the new gi)

I wouldn't say I am having too much in the way of gi symptoms now.  (except for the gastritis stuff which was new as of last year) Joints aren't too bad.  I feel ok.   I just don't think the colonoscopy will tell much unless it shows inflammation either by appearance or biopsy. That would mean I have progressed despite treatment which I know happens to a lot of people.

So even though it does sound like it will not be that informative it still has to be done.  I will ask about the pill cam but if crohns inflammation is all microscopic that won't show anything. ANother thing I'm worried about is that I have an anatomically screwed up bowel. I have multiple adhesions and have had 2 laps many years ago, the last where they found a loop of sigmoid colon stuck to my right pelvic wall and down in my pelvis  (It is normally on the left side) but I did not have problems at the last two colonoscopies with this so hopefully the surgeon fixed it and it stayed in place.  Funny, before all this started I never had any bowel function problem, even with a sigmoid colon on the right side.  Long story, I'm afraid the pill cam might get stuck. The first lap I had showed my terminal ileum stuck to my front abdominal wall in a sharp kink. A pill cam  could get stuck, but then again no food/seed/whatever did. So?????  WHo knows, the new gi may suggest that.

Root

Posted 11/28/2011 3:56 PM (GMT 0)
They have what is called a patency capsule that you try first to make sure it doesn't get stuck. If it does it just melts away without the need for surgery. So if the patency capsule goes thru okay, then you will be able to do the pill cam. Good luck and its good to see you again:) Hugs!
Posted 11/28/2011 4:03 PM (GMT 0)
Thanks for that information about the patency capsule Nanners. And CrohnnieToo, I'm not sure about this gi either. I actually liked gi #3 best because he was willing to try the medication trial. Pentasa is not a dangerous drug from what I've told. At this point I didn't care *what* I had, I just wanted to feel better and that is what happened. I still don't feel bad, its just the change to the new gi that has upset things. I wouldn't say I feel normal bowel wise but I'm ok.

I think saying my improvement could be explained by the placebo effect after 5 years is ludicrous (new gi) and if I "just" have IBS (new gi hinted at that) then I say that there are a lot of people with "just" IBS out there who are not being offered something that may help them. I'd like to find an IBS sufferer who has tried pentasa with no improvement. But then maybe it wasn't IBS since they don't even know what IBS Is!!!! ACK.
Posted 11/29/2011 10:11 AM (GMT 0)
Hello!

You have almost same troubles as I do. I have passed 3 colono, 1 capsule, 1 MRI, 1 SBTF all in 2010, 2011: all that was seen was visible inflammation in terminal ileum and hyper plastic lymphoid follicles in sample bio. Let us know what the results will be!

In my case there was only that. No inflamation in tissue, but visible it was inflammation.

Did you loose some weight? Appetite? Any spasms? Just wondering. What do you eat? Avoid gluten, diary? Any special food?

I know exactly how you feel! Being undiagnosed is harder than be diagnosed. Am I right? I am glad you feel OK! I do also. But wonder all the time when will a payback time come. What do you think?

Hope for us never! :)


Best!

YP9
Posted 11/29/2011 1:43 PM (GMT 0)
YP9,

You didn't say if you are being treated for anything and your signature doesn't say either. I think I would cheer if they found any inflammation in my terminal ileum, even if it didn't qualify technically as "crohns".  There has never been anything visibly although last one was done almost 5 years ago. They did look into the terminal ileum on all colonoscopies, took pictures etc. but didn't biopsy.  I didn't question the last gi because he was still willing to treat me and that was my goal by this time- to feel better. I figured they had done enough looking. Didn't want to antagonize him by grilling him about this and risk losing being treated.

I was treated with pentasa in spring 2007 which relieved my RLQ pain completely.  As time wore on, I realized that I stil didn't feel good even though I didn't have this specific complaint anymore.  In 2005 I had been tested for food sensitivities and found to have sensitivity to wheat, milk protein, egg protein, corn syrup and ginger. I eliminated all of these from my diet and I did lose weight, a LOT of it (25 lbs)  I'm not sure if it was completely the diet responsible or not. I don't think so because I still ate plenty. Maybe a few lbs of it was due to the diet.  I think it was my disease.  Around December 2008 I decided to give up the restrictive diet and I did gain a few lbs but in May 2009 I was put on humira and immediately started gaining weight. I am now back up to 130 lbs.  I credit humira for doing that. I doubt I have been eating that much more now that I no longer follow the diet. 

The reason I tried and continued with the gluten etc free diet was due to mouth ulcers. They disappeared and have not reoccured.  I was on the diet for 2 years and didn't feel better systemically though.  I now eat everything but do limit milk protein. I find that if I overindulge my mouth will still get a little sore, just not as bad as previously. I drink Rice Drink that is enriched. I actually like it better than milk. I don't eat eggs very often although I do eat foods with egg in it.  

I agree with you, not having a diagnosis is very upsetting and confusing.  It doesn't help to know not for sure because then you wonder what you do have and will you ever feel better.  I always tell people when they tell me of an upsetting diagnosis. I tell them "at least be glad you know what you are up against. That's more than half the battle" (although I wouldn't say that if the diagnosis was something like cancer)   

Let's hope that 2012 is a better year for all of us!

Posted 11/29/2011 4:18 PM (GMT 0)
I have had 3 colonoscopies and no one of them showed any naked eye inflammation. Only biopsies showed inflammation still it was not conclusive. Last summer, I had an enteroscope and a proctosigmoidoscopy and the picture and the biopsies showed chronic proctitis (though the doc was not convinced before the biopsy results that it was inflammation) and enteritis. I had the two options of both the pill cam and the enteroscope (push endoscopy) and then the push endoscopy was favored over the pill cam as it enabled them to take biopsies.

Since you say that you have adhesions, why don't you ask your doc about it. It is either called push endoscopy or enteroscope and there are two types: with one balloon and two balloons. It's similar to a normal endoscopy but takes a bit longer time around 45 mins and this is relative.

Another issue, he should not only take biopsies from the TI but other places as well as Crohn's might be scattered in other sites. My GP told me that the places of biopsies are calculated and are not done haphazardly. In the enteroscope, they took biopsies from the jejunum, ileum, terminal ileum and rectum even if they have written that they looked normal.

Take care!
Posted 11/29/2011 5:43 PM (GMT 0)
Thank you for that information minnie. I will definitely ask if there are any other tests that I haven't had yet and mention what you've described.

Root
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