Sort of clean scopes?!

[Maya142]

My daughter just had her second endoscopy colonoscopy. Last time she had inflammation in her colon and terminal ileum and granulomas in her terminal ileum. She started Remicade soon after.

This time she has mild inflammation in her terminal ileum and none in at all in her colon! The doctor's words were that her colon looks perfect!

While this is very good news, I'm slightly confused. She continues to have stomach pain (lower ride side) and diarrhea. The diarrhea worries me because she tends to be constipated. She doesn't feel good at all - she's always exhausted and she's lost 11 pounds in the last year.

Her IBD nurse said they thought her symptoms were IBS. She has been diagnosed with both. We were planning to do an MRE but her dr doesn't want one anymore since her of the colonoscopy were so good.

I'm at a loss. Should I be pushing for an MRE? Or a pillcam?

We're switching to Humira anyway because while Remicade seems to have helped her Crohn's a lot, it didn't help her joints much, and her MRIs of her knee and lower back look worse. Should I wait and see what the Humira does? Any advice?!

 

[Jmrogers4]

If she has mild inflammation in TI and is still having problems with D and stomach pain I would push for MRE/Pill cam to check for small bowel inflammation. Has she had a fecal calprotectin lately? What are her inflammation numbers?

 

[Farmwife]

Push for the pill camera. There still could be issues in the small intestine.
I wish I could get one for Grace but I don't want her scooped there times in one year just to have a pill camera:yfaint:

Hugs

 

[Maya142]

Her last calprotectin was in the summer, after she started Remicade and it was 48 (!!). We don't have one from when she was flaring. Her bloodwork never shows inflammation, even when her joints are red and swollen, so that's no help.

 

[Jmrogers4]

Yeah Jack's either, could you ask for another calprotectin. His baseline is 90 so when it came back at something over 300 this last time, while not enough to raise any flags if we didn't have baseline since it was definitely increased we did MRE and showed inflammation at TI and in small intestine. He had stomach pains and constipation and as he called it super soft poop - not liquid but more diarrhea then not.

 

[Maya142]

The issue is the IBD nurse seemed so sure that M's symptoms are from IBS. M isn't being cooperative either since she's never had an MRE or a pillcam, just the test where she had to drink a lot of barium (I've forgotten what it's called!) and she's sick of all the testing.
I think it's time for me try to get in touch with her GI, because I'm worried that she could have inflammation we're missing.

 

[Twiggy930]

My son has also been given the IBS on top of IBD diagnosis. It has been a hard one for me to accept. My son's fecal calprotectin repeatedly come back normal even when he is in horrible pain, unable to eat, spends hours on the toilet, has joint pain, and looks grey. Has your daughter ever tried a probiotic? My son's abdominal pain seemed to get better when we started him on a probiotic. We are also having him follow the FODMAP diet and it seems to be helping too. I have had no luck with GI in pushing for more testing given that his fecal calprotectin comes back normal and pill cams are not available here. Since the diet and the probiotic seem to be helping I am ok with this. It is a very frustrating situation. I find myself being devastated at the news that various tests come back normal because I just want them to find something to fix!!!

 

[xmdmom]

The issue is the IBD nurse seemed so sure that M's symptoms are from IBS.

An 11 pound weight loss in an adolescent who is not trying to lose weight, and who has Crohn's should not be attributed to IBS. Weight loss is not a characteristic of IBS nor is anemia or elevated crp or esr. Any of these abnormalities in a person with Crohn's would suggest Crohn's inflammation . I agree with the others; I would want to have an MRE or pill cam. It is really difficult when medical professionals who should know better, push the IBS diagnosis. (My son's first doctor suggested IBS at the first visit even though my son was anemic and had a CRP that was really high, 46. I'm not sure he would have been scoped if I hadn't argued with the doctor, who listened to me, most likely because he knew I was a physician.)

I wonder if the "mild inflammation" in the ileum is enough to cause her symptoms. Why is there still inflammation with Remicade? What did the doctor say about that?

I'm guessing the barium test you mentioned was a small bowel follow through.

 

[Maya142]

Twiggy930 - I did believe the IBS diagnosis initially, since seeing psychologist helped M with stomach aches. But the stomach pain she had then was all over her belly and now the pain is on the lower right side - exactly where her Crohn's was located, so I don't think it's the problem anymore. She definitely would not be willing to do a diet, though I have tried to convince her. She is on a probiotic though. It's funny how when the results of tests are good you find yourself more confused and upset than when they're bad!

xmdmom- The IBD nurse was not at all concerned about the mild inflammation. M's weight loss has been very gradual, over 8 or 9 months. Every visit to the dr she seems to have lost 1 or 2 more pounds. I didn't even realize how much she had lost until she started complaining that her jeans were loose and I looked at her medical records! She was 101 in the spring and is 90 pounds now (at 5'2).
I guess it's time to start bothering the dr!

 

[Sascot]

How frustrating for you. I agree that sometimes good test results don't help! Definitely worth pushing for more tests although it is hard when your daughter doesn't want them. Why not try another calprotectin for now and see what inflammation level is.

 

[DustyKat]

I agree with pushing for an MRE. Lower right side is indicating TI issues may still be present. I’m not saying that it isn’t possible to have a concurrent diagnosis of both IBD and IBS but it is just a tad too incidental for my liking that the area of pain coincides with her region of active IBD.

My reasons for an MRE are:

- Is there scar tissue that is present but out of the reach of the scope? It may go some way to explaining her pain and lack of inflammatory marker response to it.

- I would prefer an MRE before a pill cam for two reasons. Although a dummy cam can be done first you may eliminate the need for one by having an MRE under your belt. Also a pill cam is still only go to show you topical results. An MRE may pick complications that are present beyond the bowel wall, e.g. fistula, abscess, thickening etc.

With her ileal involvement has she had bloods done for Iron Stores, Folate, B12, Vit D, Magnesium and Zinc?

Good to hear her colon is looking picture perfect! I just hope that she will soon have the rest of her bowel looking that way, bless her. :heart:

Dusty. xxx

 

[Maya142]

Thank you Dusty! I will be asking about an MRE on Monday.
M's labs were done in December and were all normal, for the first time in months! I'm worried about scar tissue though, I though we would have been able to see it during the scope but apparently that is not the case?

 

[DustyKat]

They would see scarring if it is in the area that is scoped.

A scope can only reach so far. From the top end it will reach through the stomach and into the first part of the duodenum. From below it will visualise all of the large bowel and the usually much of the terminal ileum. The problem is the small bowel, made up of the duodenum (approx. 30cm), jejunum ( approx. 2.5m) and ileum (including the terminal ileum approx. 4m), is approximately seven metres long. So a standard scope only sees a few inches at most of the duodenum and about 30cm of the ileum. Since that leaves the vast majority of the small bowel unseen many GI’s will use an MRE to complement a scope when evaluating patient progress.

Dusty. xxx

 

[Maya142]

Just an update - talked to M's GI today who believes M is in remission and her symptoms are IBS. However, she said we can do an MRE just to be sure there isn't inflammation in her small bowel.

Also a question- M told me today that she has mouth sores. She told me after I had spoke to her GI (of course), so I wasn't able to ask the dr. I've read online that mouth sores can be symptoms on Crohn's. How would we know if hers are related to Crohn's and not something else? Are there different types of mouth sores? Hers are small right now and look like white dots. They're on the inside of her lip and cheek.

 

[kimmidwife]

Maya,
Weight loss and mouth sores together sounds like she is in a flare. I would push for further work up. Did she have a fecal calp with her labs?

 

[Maya142]

No, we haven't done a fecal calp since August. Her MRE is in February so we'll see soon I suppose. Her dr really thinks it's IBS and I hope she's right, but it doesn't seem to fit.

 

[DustyKat]

Mouth (apthous) ulcers are an EIM of IBD and are the same as the ulcers seen in the bowel when flaring.

Since we are all prone mouth ulcers at some time or other you need to put them into the context of what you are dealing with. So where in the mouth the are, the amount present at one time, other symptoms that may occurring at the same time. Since your daughter does have other symptoms it would more logical to lean toward IBD rather than away from it.

Just one thing though…when you say white dots, dots conjures up very small lesions to me, if they don’t progress past this in the next day or so then perhaps what you are seeing is oral thrush??

Dusty. xxx