I am so confused. Please help me Understand!! Posted report

[LittlebitsMommy]

I am so confused and really don't know what to think right now. I am happy for the results if they are right but confused at the sametime. Ko was weaned off the steroids. He took his last dose of the Entocort on the 20th of November. Dr wanted him weaned off steroids before he had a MRE. We had tried to do MRE the first part of December and wasn't able to do because Ko couldn't drink all the fluid without throwing it up. They couldn't reschedule the MRE until last Thursday. This time they put down and ng tube. Ko had been sick with a cold since Christmas. His allergy dr had put him on prednisone and 2 rounds of antibiotics. He had just came off of it a couple of days before having the new MRE. Could this have made a difference in the MRE?
Well I got a call today from the nurse. She said she called to let me know that there were no traces of any IBD in the ileum or small bowel. Okay so I said what does this mean? And when do we need to come back? She said he doesn't need any follow up at all. So does this mean that the Crohns just disappeared? Everywhere I have read said once you have Crohns you always have it. Right? Ko still has the tummy pain. He goes back and forth between water stool to being completely constipated. I feel as confused today as I did the day he was Dx. Is an MRE as good or better than a colonoscopy? That's how they dx him before was with a colonoscopy. I don't know what I need to do. Thanks

 

[Jmrogers4]

Hmmm! Crohn's generally not diagnosed through MRE, could be that they did not see any narrowing/inflammation but that is why scopes are gold standard for diagnosis as you can actually see the instestine and biopsies even over that because even if you can't see inflammation it could be there microscopically in fact I believe that is the only way a few kids on here were diagnosed by biopsies.
When Jack was in remission and scopes done during this time showed no inflammation and not sign of active crohn's, he had mucosal healing. Sadly this did not last as Crohn's reared its ugly head again and inflammation was found in small intestine with MRE.
But yes you are right, Crohn's just doesn't go away unfortunately. Can't imagine not doing a follow up even when Jack was in remission we had follow up for 6 months down the road (unless something happened in between).
Maybe a follow up call to say I just want to make sure I understand what you were saying no follow up regarding MRE but when do we schedule a check up

 

[LittlebitsMommy]

Thanks Jacqui I am calling tomorrow and also emailing now. I was in the car when she called. I was in complete shock when she said nothing was seen and no follow.

Let me ask when Jack was in remission. Was he on any medicine for his crohns or to help him stay in remission? Ko is off of everything. I mean please don't get me wrong there is nothing I would love more than for him to be magically cured of crohns but I just don't understand.

 

[kimmidwife]

It is a possibility the prednisone he was on was suppressing the inflammation. Since he was only off the entocort a few weeks and then had a course of prednisone it sounds like the meds were keeping the Crohn's in check. The question is now has it put him into remission or when he comes off everything is he going to flare again? It doesn't make sense that they said no follow up that can't be correct. I would out a call i to the doctor and speak with him directly if you can.

 

[LittlebitsMommy]

I was just able to go online and pull up the final report. But there's so many words and things that I don't know or understand

 

[LittlebitsMommy]

Just emailed Doctor also asking for him to call me.

 

[Mehita]

If you want to, feel free to post parts of the report here. We can try to help...

 

[LittlebitsMommy]

EXAM: MR ENTEROGRAPHY W AND W/O CONTRAST

HISTORY: Crohn's disease.

TECHNIQUE: MR enterography was performed following the administration of approximately 1350 mL of VoLumen via nasogastric tube over approximately 60 minutes. MR imaging was performed using coronal T2 SSFSE with fat sat, coronal bTFE, coronal bFFE,
axial T2 SSFSE with fat sat and axial bFFE sequences. Intravenous gadolinium contrast was administered and pre- and postcontrast dynamic coronal T1 THRIVE imaging was performed. A delayed post-contrast axial T1 SPIR sequence was also obtained. A total
of 1 mg of glucagon was administered intravenously during imaging.

COMPARISON: No prior MR enterography was available for comparison. A prior CT scan from 2/15/2012 was reviewed.

FINDINGS:

There is MR image degradation throughout the examination due to the patient's body habitus and patient motion.

There is adequate contrast on this examination with intraluminal contrast seen throughout the small bowel, including at the terminal ileum. Contrast is also seen within the proximal colon, with good contrast into the mid transverse colon.

The small bowel appears normal throughout, with no regions of persistent narrowing or wall thickening identified. Loops of apparent thick walled jejunum are noted on the T2-weighted single shot fast echo sequence, however on subsequent bFFE and bTFE
sequences these are noted to be distended and normal in appearance. The dynamic contrast enhanced images are significantly degraded by patient motion, however there are no appreciable regions of bowel wall thickening or hyperenhancement. There is no
significant mesenteric hypervascularity. There is a significant volume of intraperitoneal and mesenteric fat, however this is distributed diffusely and symmetrically and does not have the typical appearance of "creeping fat". No definitive abscess or
fistulous communication is identified. There is no free fluid seen within the abdomen or pelvis. The opacified colon is also normal in appearance with a normal haustral fold pattern and no evidence of wall thickening or hyperenhancement.

The study was not specifically tailored for evaluation of the solid organs of the abdomen. As visualized, no focal lesion is seen within the liver. There does not appear to be significant intra or extrahepatic biliary ductal dilation. The gallbladder is
present. There is no gallbladder wall thickening and there are no filling defects to suggest cholelithiasis. The spleen appears normal in size and signal intensity with no focal splenic lesion. No focal lesion is seen within the pancreas. The pancreatic
duct is visualized and is normal in caliber. Both kidneys are normal in position and orientation. There is good cortical medullary differentiation. No focal renal lesion. No abnormal dilation of the renal collecting systems.
ImpressionIMPRESSION:

No distinct small bowel abnormalities are identified. No region of persistent wall thickening, luminal narrowing, or hyperenhancement.

Adequately opacified segments of the colon are normal in appearance.

No secondary features of inflammation within the abdomen or pelvis. No free fluid.

 

[DustyKat]

Being autoimmune Crohn's has the ability to wax and wane. Therefore if you are in deep remission you will not have any signs that the disease exists but it remains laying in wait. How long that wait is anyones guess, a few weeks for some right through to decades for others. The thing is though if symptoms persist that cannot be put down to an obvious cause then something else is going on. remission means symptom free. In my own children's case they have chronic persistent diarrhoea if they don't take psyllium but that is not a symptom, it is a legacy of surgery so it important in some cases to differentiate between the two. Normal for a person versus abnormal.

Prednisone does have the ability to mask symptoms and of course it's primary function is to reduce inflammation. If inflammation has not been present long enough to cause permanent change - scarring, then it will not show up. If Prednisone has adquately treated the inflammation then again, it will not show up on imaging. Hence why the doctor wanted him steroid free for a period of time prior to the MRE but I know that was out of your hands.

MRE and colonoscopy can't be compared as they are diagnostic tools for different areas. An MRE can complement a scope when disease is present high up in the small bowel and in the last portion of the small bowel but for the remainder of the small bowel, which is the vast majority of a very long organ (7 metres) a scope can't reach. The other test to complement an MRE is a pill cam. Also CT scan and ultrasound can be used.
The gold standard is a scope as the GI can directly visualise the area and take biopsies but disease has to be in the large bowel and/or the terminal ileum. From the upper side of things it needs to be present in the stomach and/or the first portion of the duodenum. Outside of this imaging is the only way to see what is going on.

Regardless of the normal MRE result ongoing monitoring should be done, chronic disease management is about staying on top of things rather than playing catch up everytime you hit a crisis. Not to mention getting to the bottom of what is causing the fluctuating bowel habits if it isnt down to Crohn's.

{Hugs} to you mum! :ghug:

Dusty. xxx

 

[Jennifer]

My MRE didn't show anything (had it done a few months after a bowel obstruction). There wasn't even mention of scar tissue from my previous resection (obvious scaring). I read somewhere that a CT scan provides better images than an MRE. "...a side-by-side comparison of scans produced via CT and MR enterography shows that CT images are much crisper and have a higher resolution than MR enterography images..." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033548/ It's possible that there isn't any inflammation to see, or maybe the quality of the image is too poor, yet it's also possible that the radiologist isn't quite a wizard and may miss something.

If symptoms are still present then continue testing to see what's really going on. If he's in remission then have regular testing every couple of years (scopes at least) and have blood work done every few months to check for inflammation etc (can be done every 6 months if he's not on any meds that require monitoring). It's possible that his GI is willing to see him as needed yet generally they say that they'll see you in a year when you go into remission.

 

[CrohnsKidMom]

When my son was dx'd last Spring, the GI wouldn't start any treatment at all until tests were completed. Any meds, etc., would mask the true extent of the disease. An MRE was done, but the GI said it would be the colonoscopy and biopsies that would confirm the dx. I would definitely follow-up with your GI to get some answers. Take care!

 

[Farmwife]

All that means in my opinion is that you should be happy that no structural damage is being seen. The GI from mayo told me when I said how happy I was that Grace's cte scan showed nothing, is that only a pill cam at this point will tell the whole picture. Mre's and cte's might not show whole picture

Hugs

 

[Mehita]

Is he able to swallow pills (like for the pill cam)? Sounds like he was wiggly during the MRE.

And, remind me, does he have an official dx yet? Or is that why he's being tested now?

 

[imaboveitall]

This happened to Violet, in hosp last May very sick. Abd MRI and MRE showed NORMAL result. Quote from attending doc " no sign of Crohn's disease".

This caused a resident and I to go running together down the misdiagnosis path (whereon I had taken a long journey the year prior) only to have her GI AND his partner tell us that MRI/MRE are unreliable for diagnosing MUCOSAL Inflammation, they never rely upon these tests for that, they are good for ruling out stricture/abscess and other STRUCTURAL changes only.
They were done in V's case at that time as he feared both stricture and abscess due to her high fevers.

 

[Jmrogers4]

Jack continued to take medication LDN at the time to maintain remission there was no discussion to discontinue as we wanted to keep him in remission. It was always stated he would be on some sort of medication unless a cure was found that this is a lifelong disease. I agree with what everyone says. It just says currently there is no inflammation showing through MRE but some pictures were distorted due to movement. That doesn't mean he doesn't have Crohn's or it won't rear its ugly head again. Hope you get more answers and a least a check up.

 

[SupportiveMom]

This is great information. Thanks for posting all of this!

 

[LittlebitsMommy]

I got email back from nurse this morning saying. Dr.P thinks it would be best if you come in and discuss results in person. Uh duh thats what I wanted I wanted and thought the plan was until you called last night and said he needed no follow up. So we go the 28th to talk with dr.

 

[Jmrogers4]

Glad you got the email back from the nurse. Hope the appt. goes well next week.

 

[Sascot]

Good luck for the appointment

 

[dannysmom]

That sounds better! Glad you got an appointment and I wish your son felt better!

 

[kimmidwife]

That sounds way better! Glad it was cleared up!

 

[leah H]

I agree with all here about this being a lifelong disease and that the drugs only work on the inflammation. I'm surprised he was prescribed Entocort because it only works best in the colon and stopping it cold turkey can bring on a flare. I was on it for six months for Microscopic Colitis and had to wean VERY SLOWLY off of it… and that was only after i drastically changed my diet. Have you changed your son's diet at all? If he continues to eat food that he is intolerant to, then inflammation will return in no time. Actually, since he still has symptoms, he is NOT in remission. Being a certified nutrition specialist, I just want to say that gluten, dairy, soy,and eggs are the four biggest inflammatory offenders. Plus raw fruits and veggies can also cause problems when symptomatic.
good luck
Leah