Got Back Biopsies Today, And...I Have Crohn's?

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holo100
Regular Member


Date Joined Oct 2016
Total Posts : 79
   Posted 7/10/2018 5:18 PM (GMT -6)   
So saw my GI doctor today. Good, informative meeting, but I wouldn't have guessed in a million years that he would say, "Your biopsies show that you have Crohn's Disease, not UC."

Surprise, surprise, surprise. (That may be funnier if you're old enough to remember Gomer Pyle.)

So here's the weird part. He asked how the Pentasa was working, because I guess Pentasa's only so-so with Crohn's. The Pentasa's been working great. No more blood (not that there was much to begin with), no diarrhea, and BMs back to normal in quantity and quality. He said, "Cool, we'll keep you on that for the rest of your life, and maybe throw some Imuran in if your blood tests still show inflammation." Apparently my gut inflammation was indeed moderate to severe, with a lot of skip lesions. No strictures or anything, though. Whether or not I can afford Pentasa for the rest of my life is another story, but we'll see on that. Just sort of weird that the Pentasa seems to be working, and that I can have mild symptoms with moderate to severe inflammation, though the doc said that's not that unusual.

So...I guess I don't have UC. It kind of makes sense, as it explains the weird fevers I was getting last year and the nausea I've been dealing with off and on (though that seems to be triggered by stress--felt like I was going to puke until he said those wonderful words "You don't need that CT scan"). I've already started posting on the Crohn's board, so I wanted to thank everyone here for your kind words and support over the past month or so. I wish I could do more than just pray for everyone here and send out some good vibes. But it looks like I won't be posting much, if at all on this board.

Unless the doctor changes his diagnosis again, anyway...

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 16427
   Posted 7/10/2018 5:31 PM (GMT -6)   
I am sorry that your diagnosis has changed, but I am happy that you're doing well and you've got a plan. Were your past biopsies always consistent with UC? How many times have you gotten pathology results?

You're always welcome to come here for support, but I understand moving over there. I post there sometimes too.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

holo100
Regular Member


Date Joined Oct 2016
Total Posts : 79
   Posted 7/10/2018 5:38 PM (GMT -6)   
Past biopsies were more "We have no idea what's wrong with you" and "Maybe UC and maybe antibiotic caused non-cdiff colitis." This is only the second time they've done a biopsy.

Those were the doctors I quit seeing, though. The new guy seems to have his head on straight.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16427
   Posted 7/10/2018 5:42 PM (GMT -6)   
Did you get a copy of the report? I wonder what the old ones said? Probably indeterminate.

It's good you found someone competent. It can be hard to come by!
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

countess18
Regular Member


Date Joined May 2016
Total Posts : 248
   Posted 7/10/2018 6:34 PM (GMT -6)   
I have Crohn's colitis based on skip lesions seen during scopes. My original proctitis biopsies were very consistent with UC and I have had indeterminate biopsies since. It's purely the appearance of my ulcers/inflammation that my doc now states that I have Crohns.
Holo since I have Crohns only in my colon, I have found that it acts more like UC. When I go on the Crohns board and other Crohn's forums, I find that my disease does not have as much in common with others. One reason is that Crohn's is typically found in the small intestine and some people have fistulas in the rectal area and there is usually terminal ileum involvement. I have none of these issues currently. So while the Pentasa like meds were not enough for me, I still learn more on the UC site as it is a colon only disease so acts similar. So for now your disease will be treated the same as UC would as long as it's in your colon only.
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
started Humira 11/17/17, -5/17- failed Humira
started Remicade 6/8/17 -on pred wean again
past meds- cortifoam, canasa, rowasa,balsalazide, prednisone

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4386
   Posted 7/10/2018 6:47 PM (GMT -6)   
Im glad you got a diagnosis and that Pentasa is working for you (and that you dont need the CT scan!).
34 years old; diagnosed UC March 2007.
Latest scope: 9-29-16: "mild-to-moderate" chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. 25 mg pred. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12750
   Posted 7/11/2018 7:26 AM (GMT -6)   
Having a Crohn's diagnosis opens up new treatment options for you. All of the new meds are ALWAYS approved for Crohn's before they get to us UC-ers, very last. Having an accurate diagnosis means you'll be treating your symptoms better with appropriate treatments and have a better quality of life, which is a good thing!

Did your biopsies show deep-tissue inflammation or only shallow? Shallow inflammation often states infiltrate into lamina propria (a tissue layer within the bowel). The reason I ask, is pentasa is great for shallow inflammation that's typical of an UC. If you have deep tissue inflammation (more typical of a crohn's diagnosis) noticed in your biopsies then there's not much point in taking Pentasa at this point. Shallow-inflammation + crohn's is fine for Pentasa.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

With UC, we're much like a footballer on our way to the bathroom: running, jumping over and agilely dodging around obstacles, and knocking out-of-the-way all that are in our path to the end-zone.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30681
   Posted 7/11/2018 12:38 PM (GMT -6)   
Pentasa is released through the small intestine as well as colon....so its good to have it all covered should cd pop up there.

Hope you stick around here regardless.....it's good you have a definitive diagnosis.

Make sure all areas of inflammation are covered.....both ends. Pentasa enemas are 100ml and will go a bit farther than the 60ml.


q
*Heather* I give suggestions, do with them what you will.
Status: ...Asacol 3 @ 2x daily; Salofalk enema @ 3rd night (nightly/ flares, tapered/maintenance)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol 20mg as needed; Zantac 150mg; Pulmicort/Oxeze/Airomir (asthma); Effexor XR 75mg (depression); Rosuvastatin 10mg (cholesterol); Telemesartin 80mg (BP)
~vitamins/minerals/supplements; Probiotics....(RenewLife Ultimate Flora Critical Care + Genuine Health Advanced Gut Health 50 billion @ bedtime)
~Metamucil capsules 6 @ 2x daily with meals; Vitamin D 4500 IU
~URSO 500mg @ 2x daily for Primary Biliary Cholangitis
"TREAT (FROM)BOTH ENDS" worth it !!

holo100
Regular Member


Date Joined Oct 2016
Total Posts : 79
   Posted 7/11/2018 1:46 PM (GMT -6)   
I'll repost here what I posted over in the Crohn's forum, about my Quest for Biopsy:

So I was promised that I would be sent a letter with the biopsy report a month ago after my colonoscopy. The letter would be delivered in two weeks. Here we are, a month later--no letter. I wasn't given anything yesterday other than "You have Crohn's and here's what we're going to do" before my GI doc dashed off to his next appointment. (He informed me that he does 18-20 colonoscopies per day.)

So I called the records department this morning. Answering machine. Called them back an hour later. Answering machine. I finally got hold of them after one of the nurses in the GI department walked down the hall and verified they were in their office. And here is how that conversation went:

I requested that I be sent my biopsy reports. No, the records lady replies, we have to have a release form first. Can you go to our website, download one, print it out, and fax it back? No, I can't, as I don't own a fax machine. (Does anyone own a fax?)

I inform her about the letter I was supposed to get. She has no idea what I'm talking about. First, she says the letter wasn't sent out "because we're overworked" and they haven't gotten to it yet. Then she surmises that maybe the GI department figures that yesterday's follow up counts anyway, and therefore no letter is necessary. After I informed her that yes, it darn well is necessary, she reiterated that I need to fax her. After I reiterated that, weirdly enough, I do not have a Kinko's in my house, she then said I could e-mail the GI department, they could request that I get the results, and then they could be sent out to me. She also informed me that she can't find the release request that my primary doctor sent three weeks ago--because at the very least, I could look up the biopsy when I see my primary in two weeks.

And I haven't even mentioned how the hematologist literally forgot the Prometheus test she was supposed to take.

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4386
   Posted 7/11/2018 4:52 PM (GMT -6)   
Omg! Ridiculous!
34 years old; diagnosed UC March 2007.
Latest scope: 9-29-16: "mild-to-moderate" chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. 25 mg pred. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax

holo100
Regular Member


Date Joined Oct 2016
Total Posts : 79
   Posted 7/12/2018 5:09 PM (GMT -6)   
Could I ask you folks' help in interpreting my blood panel results?

Most everything looks really good, actually. The spreadsheet I was given gives me my results and the reference range, and I seem to be comfortably in the middle on most things. Even the flagged ones are just above or below the middle.

The two areas where they aren't close or average is my globulin level (4.4 gm/dL; average is 3.5 gm/dL) and the one that really concerns me, the c-reactive protein (CRP), which is a 2.1 mg/dL--the average is 0.3 mg/dL! From my internet research (ha), 2.1 mg/dL is either still within the okay mean, or it's slightly above being okay, or it's bad. In other words, I'm either doing well or my heart will leap out of my chest and scream "Kali Ma!"

Anybody want to help relieve a little anxiety? The fingernails are getting pretty worn.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12750
   Posted 7/12/2018 6:35 PM (GMT -6)   
Does the test have a reference range? Oten it says ypur value is X and anything below Y is normal.
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

With UC, we're much like a footballer on our way to the bathroom: running, jumping over and agilely dodging around obstacles, and knocking out-of-the-way all that are in our path to the end-zone.

holo100
Regular Member


Date Joined Oct 2016
Total Posts : 79
   Posted 7/12/2018 8:19 PM (GMT -6)   
For the CRP it's 2.1 mg/dL and the normal range is 0.1mg-0.3 mg/dL.

I guess it doesn't matter, because there's definitely still inflammation. Blood in the stool tonight--not much, no more than any other time, but the first I've had since I started the Pentasa. Great! Looks like I get to try an immunosuppressant that will take 3 months to work and make me feel horrible--assuming it doesn't wreck my pancreas and give me terminal cancer.

Yeah, I'm really pissed off at my own body right now. about the time I think I have this thing under control or beat, it's like "NOPE!"

Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4386
   Posted 7/12/2018 9:23 PM (GMT -6)   
This disease really sucks. I'm sorry you saw blood again. I know how awful and depressing and scary that is.
34 years old; diagnosed UC March 2007.
Latest scope: 9-29-16: "mild-to-moderate" chronic and active proctosigmoiditis (infectious cause). Battled reoccuring campylobacter & c diff. Oct-Dec 2016. Healthy since Dec. 25, 2016 until I started smoking May 2018. 25 mg pred. Trying to re-quit smoking. Maintenance meds: Delzicol, 6, 2xday; Rowasa nightly; Singular & Allegra for allergies; Xanax

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 12750
   Posted 7/13/2018 7:21 AM (GMT -6)   
Yes, you have some inflammation but it's not tons. I haven't had side effects from the immunomodulators. Cancer risks are very low, less than 1%. Probably sarcasm, but try not to worry smile
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

With UC, we're much like a footballer on our way to the bathroom: running, jumping over and agilely dodging around obstacles, and knocking out-of-the-way all that are in our path to the end-zone.

countess18
Regular Member


Date Joined May 2016
Total Posts : 248
   Posted 7/13/2018 5:46 PM (GMT -6)   
I ditto Sara14's remarks... ugh
Thanks

T
diagnosed proctitis April 2016 s/p a c diff infection age 53
Nov 2017- ?Crohns colitis to mid transverse - mild/moderate
started Humira 11/17/17, -5/17- failed Humira
started Remicade 6/8/17 -on pred wean again
past meds- cortifoam, canasa, rowasa,balsalazide, prednisone

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16427
   Posted Yesterday 6:09 PM (GMT -6)   
You don't need a fax machine to send a fax. There are online services, like faxzero and myfax that will let you send a fax for free. I used to do it all the time when I needed to send a fax.

You can download the form and edit it on the computer, or print it, fill out and take a picture.

I hate when people make excuses though. They should just apologize and help you.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

holo100
Regular Member


Date Joined Oct 2016
Total Posts : 79
   Posted Yesterday 9:19 PM (GMT -6)   
I'll be heading down there tomorrow, so it turned out to be a tempest in a teapot, as far as that goes. But thanks for the info--I will definitely keep it in mind!

At least it's a beautiful drive. There are advantages to living up here in Montana.
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