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Has anybody had their doctor think that maybe they had Crohn's and not just  pouchitis? My doctor wants to be sure I don't have it even though I don't have most of the symptoms of Crohn's. She wants me to undergo an MR Enterography and I've read it's a very unpleasant test because you have to drink all this contrast solution that causes nausea and diarrhea and then lay perfectly still for 45 minutes for the MRI machine to do its job. Has anybody had to go through this test and how did their pouch handle it? I just cancelled my appointment out of fear. I've had my J-Pouch for 24 years.

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My MRI Enterography experience is described in this thread:

I am of the opinion that chasing diagnostic testing to determine what label to slap on your IBD is a complete waste of time and money. You don't need to waste time or money trying to decide whether to call your bowel inflammation one thing or another. It's like spending money trying to decide what to name your dog. A much better and novel idea would be to treat the inflammation. Whatever it is, it has to be treated. Since all the treatments for Crohn's and Pouchitis are essentially the same, the label you slap on your inflammation is utterly and completely irrelevant. Don't get snookered into wasting time and money on it, because you will chase, spend money and time, and then time and money, and get no firm answers.

That being said, the MRI Enterography can be useful in identifying the areas and extent of the inflammation. But not so much as a diagnostic tool.  It also could confirm that the pattern of inflammation is most likely due to backsplash stool and/or SIBO.

For example, if you do have inflammation in the neo-terminal ileum that was not seen previously, it's most likely due to backsplash stool, and not "Crohn's", if it extends only a few inches above the inlet.  It's very common to observe this in pouches that are over 15 years old (mine is 32 years old) and many on the board have reported this.  They first saw inflammation in my neoterminal ileum that previously did not exist 15 years after my J Pouch surgery.  After fooling around with many tests to figure it out, none of which were conclusive as to anything, we stopped trying to figure it out and focused on treating it instead.  I was of course thousands of dollars out of pocket and had no answers, but I essentially paid to find out that there are no firm answers and one should stop worrying about trying to find them.  It's yet another "Waiting For Godot" experience in your life, and one you do not need, unless you enjoy personally reliving the works of Samuel Beckett.

Last edited by CTBarrister

Thank you for your informative response. My gastroenterologist had said in the past that he doubted if I had Crohn's, but recently decided to refer me to another doctor to answer some of my pouch questions.  She has already had me go through an MRI a month ago to check for primary sclerosing cholangitis and the results showed that I was normal and "The incorporated portions of the large and small intestine are without sign of obstruction or inflammation." She still insists that I go through more testing because according to her, the treatment for Crohn's is different than for plain old pouchitis, even though I pointed out to her that the last MRI showed that I was OK. She said that wasn't enough proof and I still needed an MR Enterography. My last pouchoscopy in September and the one a year ago with biopsy of the pre- pouch ileum both showed "no evidence of active inflammation, dysplasia or malignancy.

I still wonder if anyone has had this MR Enterography with a J-Pouch and what it was like. I'm afraid to "refuse" getting tested.

@R.D. posted:

according to her, the treatment for Crohn's is different than for plain old pouchitis,

Ask her to explain exactly how the treatments are different- because they really aren't.  There isn't a treatment of Crohn's that isn't also used to treat Pouchitis. Here is what the Cleveland Clinic says are the treatments for Crohn's Disease. Every single one of them is used to treat Pouchitis:


Treatment for Crohn’s disease includes medicines that reduce inflammation and calm your immune response. Studies suggest that treating the inflammation likely improves the long-term outcomes of Crohn’s disease. You may also need treatments to manage specific symptoms, like pain and diarrhea.

  • Steroids: Corticosteroids and budesonide calm inflammation in the short term but are rarely appropriate for long-term symptom management.
  • Anti-inflammatory medications: 5-aminosalicylates are anti-inflammatory medicines used mainly for ulcerative colitis. They provide limited benefits for people with Crohn’s.
  • Immunomodulators: Immunomodulatorswork by changing how your immune system works. Types called immunosuppressants calm your immune response. Examples include azathioprine and methotrexate.
  • Biologics: Biologics target proteins that cause your immune system to have an excessively activated immune response. There’s a wide range of biologics that you receive either through an IV or a shot. Options include TNF inhibitors, integrin inhibitors, Il-12/23 inhibitors and Il-23 inhibitors.
  • Small molecule advanced therapies: Pills called JAK-inhibitors also reduce the immune response and treat Crohn’s. Upadacitinib (Rinvoq®) is the only one currently approved by the U.S. Federal Drug Administration (FDA).
  • Antibiotics: Antibiotics can treat complications of Crohn’s. Severe infections can lead to abscesses or fistulas.
  • Antidiarrhea medication: Prescription medications like loperamide (Imodium A-D®) can stop severe diarrhea.
  • Pain: There are several therapies used to help with pain related to Crohn’s disease.
Last edited by CTBarrister

I had one last May and it was a piece of cake. I did have to use the bathroom a lot while drinking the contrast. They wanted to look to see if I had anything going on with my small intestine. I think the test shows thickening of the lining and tells them if there is anything else going on. I recommend wearing a pad if you have trouble holding like I was having at the time. The staff also said they could take a break and let me use the bathroom if I had too. Both were unnecessary. I am not bothered by confining spaces so I didn't think it was bad at all.

If you think the test will help you find the best treatment for you then it's worth doing.

l have had a jpouch since 1995.

Hope this helps.

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