Confused, biopsies normal?

[KyleeB]

I was diagnosed with Crohn's in 2013. My GI doctor left this summer and now I am seeing another doctor. He said that reading all my charts that he was confused about why I was on Remicade and 6mp. So I had another colonoscopy and the biopsies he said were normal, however my iliocecal valve was not normal and there was a fistula there. So he said I am an unusual case. He can't say for sure I have crohns but if he had to bet on it that's what he said it is. He said he consulted with his colleagues who agree, that said if it's not crohns what would it be?

But he thinks I don't need all the medication I am on so he took me off remicade and upped my dose of 6mp instead. I do still have a stricture.

I'm confused and worried.

 

[Clash]

Sometimes to "check the crohn's box" the GI or pathologist wants to see granulomas on biopsy. Problem is only 50% of those biopsies have granulomas. Those suckers can be hard to locate.

I would be more concerned that he took you off Remicade which is the best with fistulas and when you come off there is a tendency for your body to build up anti oldies which means you can't use remicade again.

Honestly I would get a second opinion before stopping g femicade since it seems you may have fistulasing CD.

 

[my little penguin]

Can you get a second opinion quickly?
If you were on remicade and 6-mp
You biopsies should have been normal if the meds were working period
If you weren't on any meds at all then you would expect to see signs of disease
Expecting to see signs of disease with top ends meds on board ....
Doesn't make sense to me

Please find a second opinion ASAP since the longer you wait for remicade the more likely antibodies will form

Fwiw ds has very clean scopes - aka normal while on remicade and on humira
Because the meds are working
Not once did da Gi say he didn't have crohns because he had clean scopes while on a biologic .

Good luck

 

[Lady Organic]

do you have access to the biopsies result from 2013? what did those say?
Cant your current GI contact your previous one? Doctors often know each other.

 

[KyleeB]

My colonoscopy results from 2013 said this:
A. Colon, ileocecal valve, biopsy:
1. Fragmented ileal and colonic mucosa with mild architectural
disarray. See comment.
B. Colon, cecum, biopsy:
1. Colonic mucosa with no specific pathologic features.
C. Colon, ascending, biopsy:
1. Colonic mucosa with no specific pathologic features.
D. Colon, transverse, biopsy:
1. Colonic mucosa with no specific pathologic features.
E. Colon, descending, biopsy:
1. Colonic mucosa with no specific pathologic features.
F. Colon, sigmoid and rectum, biopsies:
1. Colonic mucosa with no specific pathologic features.

My recent colonoscopy said this:
A. ILEOCOLONIC FISTULA, BIOPSY:
- Small intestinal and colonic mucosa with architectural disarray.
- Negative for dysplasia.

B. SMALL INTESTINE, TERMINAL ILEUM, BIOPSY:
- Small intestinal mucosal with architectural disarray.
- Negative for dysplasia.

I'm not totally sure what it all means really.

He said that some doctors would take me off 6mp and just keep remicade, or vice versa just depends on their style. He felt like 6mp was a better choice, as it's been around longer and it works well. He feels that I am taking too much medicine for my age, and that otherwise I'm "relatively" healthy.

Thanks for replying.

 

[my little penguin]

The difference is if you stop 6-mp
You can restart it again without any issues
If you stop remicade the odds are against you for being able to restart it again
Remicade is proven to work best for fustulas out of all the meds.
6-mp has been around a long time so they know it doesn't reduce the risk of future surgeries
Remicade reduces that risk
6-mp increases the risk of lymphoma
Remicade alone does not

I would try to get a second opinion given you had a fistula
Puts you in a higher risk category

 

[xmdmom]

I don't see why normal biopsies on Remicade are an issue. I would think that a normal biopsy means that Remicade is working. Am I wrong? For me this wouldn't change a diagnosis that was already established. And if not Crohn's, what would be causing the ileocecal fistula?

I agree that a second opinion is needed.

 

[xeridea]

Here's a good set of criteria from a pathologist's perspective. Look down to the section on architectural changes; those are called out in your report. I'd echo other folks' sentiment here and say you should go back to your GI and insist you stay on Remicade because it's working. Your lab report should have the pathologist's conclusion regarding your case at the end.

 

[Lady Organic]

so if I get your story right:
2013: you were put on both 6-mp and remicade after a colonoscopy revealing starting problem in ileocecal valve., but no fistula. At this point, this type of treatment is given to moderate-severe cases of IBD usually. so unless your past GI saw something else that we dont know in the reports, yes it seems like a pretty strong treatment for your initial case as your GI says.

2015, colonoscopy and despite use of both Remicade and 6-mp, a Fistula has formed and ileocecal valve and small intestine still and now both show some disarray. Seems like your situation deteriotated and this dosing of both treatments were not enough for you or that they unfortunately just do not work for you... (I hope im understanding the situation properly, correct me if im wrong.)

so your doctor increased your 6-mp from 50 to 75mg/day (Am I correct?)? hoping that a higher dose of 6-mp would take care of the situation? he bets on a higher dose of 6-mp to bring remission. Its not a bad thought imo. I was once on 50mg of 6-mp and this was not enough, not therapeutic dose for me. Despite a initial positive response, I relapsed 3-4 months later. My GI then increased my dose to 75mg and then bingo, long lasting remission for several years. (never had a fistula though, only inflammation)
. So maybe that what your doc has in mind too.

Your Remicade dose maybe could have been increased too, depending on what schedule your were on. But it seems like your GI has more faith in 6-mp to get this situation under control according to his experience. is that the conclusion of the GI group meeting too?
You mention your GI discussed your case with other GIs, which is great and very responsible move on his part. If you still feel unsure about this decision, as other said, you can go for a second opinion, but in another hospital and find a GI who specializes in IBD. Do you know if in your clinic and in the colleague discussion, there was a GI who specializes in IBD? Maybe your GI talked with one in his group discussion. Thats what doctors do with difficult IBD case: they ask the IBD GI expert of the GI team, if there is one.

we often come to crucial decision with IBD unfortunately. not easy indeed. I have a tendency to fallow your GI opinion mostly because he discussed your case with other GIs. He doesnt seem like a authoritarian, unilateral doctor, which is good thing too. he is open to discussion and other opinions and even expose them to you. The decision he took seems like it was a result of a group discussion, I find it reassuring.

 

[KyleeB]

Let me give a little back story. In 2013 after I was diagnosed with Crohn's I was put on remicade. Then in July of 2013, I had a flare up I guess. I had cramps that felt like contractions that lasted all night and in the morning I started throwing up every hour. I went to the ER, I was put on predisone and then when I met with my doctor he put me on 6mp because he said that the remicade alone wasn't working. I also am following a low residue diet.

I met with my new doctor, he wanted to see if the 6mp I was taking was at a therapeutic level so he sent my blood away. Turns out it was not a therapeutic level for the 75mg I was taking. I then had this most recent colonoscopy, and after seeing that he suggested going off remicade and increasing my 6mp to 100mg.

He consulted with the other GI doctors at our hospital. I live in Vermont, and I go to the biggest hospital we have.

Since being diagnosed in 2013, I had that one big flare up, and a couple of times where I had really bad cramps but for most of the time I am fine. I don't have diarrhea or blood etc.

 

[my little penguin]

If your meds are working especially meds like remicade then you shouldn't have any flare ups or very few of them
Only when they stop working so you get flares
Plus 6-mp are given in tiny doses when combined with biologics to just give them a boost not at the same dosage or level as if they were used alone
Please consider getting a second opinion even if it's just a records review
( you don't have to be seen - Boston general is suppose to be good not sure of others in your area
Good luck

 

[Lady Organic]

i feel like what they have in mind is give last chance for 6-mp to work. And -I think- 100mg would be incompatible with taking remicade for your immunity. This combo would be too strong on your immune system, and not just on yours but on any patients. thats why he decided to sacrifice Remicade, which didnt seem to work very well since 2 years anyways. This plan seems like a good proposition to me. In the eventuality increasing 6-mp is not proven effective, they would most likely want to try something else than Remicade in the future. good luck!

 

[my little penguin]

Lady organic
The issue becomes if you stop remicade and it was actually doing the work since 6-mp wasn't therapeutic then remicade isn't an option any more due to antibodies
And now you have one less drug available in biologics there are only a few approved for crohns the rest are still experimental
Add the the fact remicade is known to be the best for fistulas
So that get thrown away and there are no guarentees that 6-mp will be enough
Or the other biologics will keep fistulas at bay
If remicade hadn't been tried then
That is a different story completely

But it has and stopping it
Is not something recommended at all in the U.S. Unless the drug isn't working or your having a reaction

 

[my little penguin]

http://www.crohnsforum.com/showthread.php?t=74299

Medscape article on what happens when meds are stopped

 

[Lady Organic]

the fistula is new and formed in KyleeB in 2015 if I understand, while she was on Remicade. She had been for 2 years on it.

From what i read and understand in the testimony, the Remicade doesnt seem very effective. Maybe you or other people or Kylee would interpret it differently, THis is the internet, so we can interpret things from different angles. maybe I am wrong in interpretation of the Remicade efficacy in Kylee's case.

 

[Clash]

Before dropping remicade, I think there should be a levels test and antibodies level test. If no antibodies then playing around with dosage and schedule would be a good option. If a fistula formed while on Remicade but the levels had never been checked nor had the patient ever been tested for antibodies then it could be that remicade wasn't at the right dose or number of weeks.

I would take these steps before I dropped remicade and the possibility of building antibodies to and not having it available to me as a med.

So a second opinion or records review would be a second set of eyes as well as another possible recommendation.