IBD that is not Crohn ?

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InfeR
New Member


Date Joined Dec 2017
Total Posts : 3
   Posted 12/19/2017 4:37 PM (GMT -7)   
Hi everyone.I'm from the Middle East and This is my first post on this forum.Before everything, I just want to apologize for my bad English and this long post smile
I have a question that it seems there is no answer for it on the internet.
1-Three month ago, I've been diagnosed with preanal abscess and surgery was used to drain the pus.The wound from surgery hasn't healed yet and pus is coming until today.
2-Two month ago, I had an MRI scan and it showed that I have developed two fistulas.Because of this, I went to see a gastrointestinal specialist and he asked me to take a stool calprotectin test.The result wasn't good(The test value was 800 while the normal value for this test should be <50).So he asked me to undergo colonoscopy which I did and in report description, I saw this:

Colonoscopy: Normal looking mucosa and vascular marking up to cecum.there was sever ulceration in TI up to 30cm
Total comment: Crohns Ileitis.

So the doctor prescribed Mesalazin tablets and Suppositories and asked me to return two weeks later with my pathology report.
The report came today and in diagnosis section, I saw :

Terminal ileum mucosal biopsy showing:
-inflamed & congested small intestinal mucosa with chronic active erosive inflammation.
-Normal villous pattern.
-No granuloma
-No dysplasia

now I'm confused. According to my doctor, this report shows that I don't have Crohn but still have some sort of IBD, however, I can't find any other disease(other than Crohn and Colit) related to IBD.
So what's exactly wrong with me?Which disease do I have?Are the preanal abscess and fistulas a result of this disease or not?
Any information about other IBD disease would be appropriated.

Sry again for my bad and annoying English.
Thanks in advance. scool

ambling
Veteran Member


Date Joined Feb 2011
Total Posts : 640
   Posted 12/19/2017 5:05 PM (GMT -7)   
Hi,

Sorry you are going through this. You need to be on strong medication - biologics.

I think you need a new specialist. Terminal ileum inflammation/ulceration and fistulas is classic Crohns Disease.

He may think that because there are no granulomas it is not Crohns, but that is wrong.

Wish you good luck. Take care.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15677
   Posted 12/19/2017 8:16 PM (GMT -7)   
I agree with ambling. Have you had stool tests to check for pathogens?
Moderator: UC
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InfeR
New Member


Date Joined Dec 2017
Total Posts : 3
   Posted 12/20/2017 2:11 PM (GMT -7)   
@ambling @notsosicklygirl
Thank you for your quick response and kind words.


@ambling
My specialist originally was going to prescribe biologics but he changed his mind after the Pathology report.(I forgot to mention that he also has prescribed Tavanex Antibiotic along Pentasa(Mesalazin) for me)
My specialist is supposed to be one the bests in my country( this is what other says and I'm not sure about it.) I went to see another specialist and he had the same idea.

One thing that makes me doubt about my IBD being Crhon is that I've never had any pain in my stomach as I've heard so many people with Crohn's disease suffer from it.
Also, I didn't have diarrhea at all during my sickness and eating any kind of food doesn't seem to affect my condition.
I had some symptoms related to Crohn like having a fever for a month(which disappeared after being on strong Antibiotics at the hospital for a week) and having mucosa in my stool for some time but I don't have these anymore.
The only Crohn symptom that I have now(other than Fistulas) is Night sweats which are happening every night.

Are there people Who have Crohn disease but not having pain and diarrhea?


@notsosicklygirl
I don't think so.I've only had stool tests for stool calprotectin and in one of them, there were positive values for RBC and WBC(I'm not sure this is neither good or bad)
But here is the list of every abnormal value from my last test (again I don't know these are related or not :D )


1-Hematology test=>Hemoglobin=13.6(Refrence Range=14-17.5),Hematocrit=39.9(Refrence Range=41.5-50.4),MCV=78.9(Refrence Range=80-96),M.C.H=26.9(Refrence Range=27.5,33.2),ESR 1 st hr=32(Refrence Range=0-15)
2-Serology test=>CRP Qualitative=Positive(3+)(Refrence Range=Negative)
3-Stool Direct Exam=>PMNs=Many(Refrence Range=None-Rare),RBCs=1-2(Refrence Range=None-Rare)
4-Stool Test=>Cl.difficile toxin A & B=Positive(Refrence Range=Negative)

Just one more thing.After every bowel movement that I have, I feel a very terrible pain near my wound(the preanal surgery's wound that hasn't healed yet)
and it lasts for 3,4 hours(when a huge amount of pus comes out of it)


So what do you think and what should I do?
Thanks in advance.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1018
   Posted 12/20/2017 6:01 PM (GMT -7)   
Doesn't #4 in your results say positive for C Diff or am I reading that wrong?

Otherwise, I really don't know whether your dealing with crohns or not because the symptoms manifest so differently in people. I've had night sweats and that's usually when it's really bad. I have had both times when I have every symptom crohns can offer. But I have also had times where it was very bad inside and I had no symptoms- no pain or diarrhea just some aches in the morning that did not seem major. I only found out when it got so bad that I had a partial obstruction from the inflammation. I have heard of people who milder cases of crohns that do well with antibiotics to help control a flare (I was on a short course of them for the first major flare I had) so that would make sense if they helped you temporarily, though I think they still need to rule out an infection.
What does the doctor suggest you do?
Crohns and many other things can be hard to diagnose and very tricky even with the best doctor. The best ones stick with you and don't give up until they find the right diagnosis.

Post Edited (Labradorite) : 12/20/2017 6:09:28 PM (GMT-7)


InfeR
New Member


Date Joined Dec 2017
Total Posts : 3
   Posted 12/21/2017 5:55 AM (GMT -7)   
@Labradorite
Thank you for your quick response.

I double checked it and it's positive.what does this mean?
Night sweats stopped when I was on Antibiotics but it came back after 3 weeks.

Before the Pathology report, he was so determined to hospitalize me but when he saw the report, He said that I should continue my medicines for two months and then go to see him with some sort of test.

I'm 24 and through these months, I hadn't a single day without pain.I can't go out and have to stay home most of the time.The bad thing is I don't know that I ever will be pain-free and be able to come back to my old normal life.
I really don't know what should I do.Should I meet a surgeon for some kind of operation on my fistulas or should I wait and take care of Inflammation first?
Waiting and living for two more months with this condition is hard but not knowing whether I will be in a better situation or not makes it even harder.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15534
   Posted 12/21/2017 7:38 AM (GMT -7)   
We had a member here a couple of months ago that developed a fistula & she did not have IBD at all, this was ruled out. Is there any way you can get in to see another gi for a 2nd opinion? Or even go see a colo-rectal surgeon for a consult just to see what one would recommend.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15677
   Posted 12/21/2017 7:46 AM (GMT -7)   
It looks like you have c diff, which could be the cause of a lot of the problems you're having. The doctor should have given you antibiotics to treat the infection. That's really frustrating if they didn't give you anything and sent you away when you're suffering with c diff. Please call them and ask about that result.

/www.mayoclinic.org/diseases-conditions/c-difficile/symptoms-causes/syc-20351691
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

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1018
   Posted 12/21/2017 6:01 PM (GMT -7)   
You need to call your doctor and find out what his interpretation of the C- Diff finding is because it looks like you have an infection. I have never had it but they can be really tough to get rid of and causes inflammation. It then gets hard to tell if you had inflammation to begin with and the infection was caused by the antibiotics knocking out the good gut bacteria or if the infection was the issue all along.
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