Double balloon, MRI, CT or small bowel series

[Eternal_Howl]

Hi,

I had a colonoscopy and EGD done today. They found a few things, but did not make it to the region of greatest concern - the ileum. I have visual thickening of a part of the ileum that has shown up on a CT with contrast. I've had the small bowel series with barium and that probably confirmed the same thing.

I'm waiting for biopsies to rule out celiac sprue (runs in family) and I do apparently have some antral gastris. There is no evidence in my colon that I have any evidence of IBD, although colon is determined to be redundant - or longer than usual.

Anyway, I see the doctor again in a few weeks as a follow-up. No doubt to discuss biopsy results when they come through. I'll already have the results by the time I see him. And then he is looking at getting me to do another small bowel series.

I was thinking a double balloon endoscopy would probably be more effective at reaching the thickened area of small bowel - am I wrong? Also, I saw in another thread someone suggested that if it's in a hard to reach area an MRI is probably the best bet. Sure, it won't show the inside, or will it? But it would give a better visual slice by slice.

I don't want another small bowel series to reconfirm the presence of a thickened bowel only to then require another type of scan or test or scope - or are they wishing to do it to see if the drugs they put me on helped stop it getting worse? It just seems like it's going to be a waste of time and I'd rather miss a step and get to one that works. I'm not viable for the pill cam - the agile capsule would not pass through, so the pill cam will get stuck.

I know it's premature, but I want to be efficient, not go through all these tests and waste money and time off work when I'm pretty sure that repeating the same step twice isn't going to be really helpful, or could it be helpful? That's kind of what I'm asking. They haven't ruled out Crohn's and for some reason are testing for microscopic colitis in the colon, although I have absolutely NO symptoms of colitis down there.

 

[Patricia56]

Until the biopsies come back you cannot say that you do not have any inflammation of the colon. You can have microscopic level inflammation characteristic of CD without visible evidence of it.

I do not believe the double balloon endoscopy would be appropriate because there are non-invasive procedures which could be used first. As far as I know, double balloon endoscopy is used primarily when they expect to be able to treat whatever they find for example, stretching a stricture.

Here the main tool used is MRE - an MRI of the abdomen. It can be done with contrast and provides excellent imaging without any radiation load. I would not have another SBFT or CT done if you can possibly avoid them. As a CDer you are already at increased risk for intestinal cancer, you do not need the extra risk of all that radiation (500 xrays for standard abdominal CT).

If the capsule wouldn't go through then you might have a stricture due to either active CD or scarring from past flares. If the stricture is from active disease then the prednisone may help reduce the inflammation causing the stricture.

The sulfasalzine is generally not helpful for most CDers. A recent large study found it no more effective than placebo. So you might ask why you are taking that if you aren't having any obvious problems in your colon (it's only effective in the colon).

Frankly I would be thinking of getting a 2nd opinion if I were you. Using older imaging techniques suggests a possibly outdated approach to diagnosis and treatment. But a lot depends on where you live as not everywhere has MRI machines available and (this is important) a trained radiologist/staff to administer and read the results.

 

[Eternal_Howl]

Thanks Patricia for your reply and your opinions

You're right, I can't confirm there isn't something on a microscopic level happening.

I was reading about the drug yesterday after I filled it and I'm also wondering, but I think he put me on this because I could not afford the pentasa and I'm not even sure that would help, but I was only on it for 5 days (I had the patient samples).

I know we have an MRI, but not sure about an MRE. I'd never come across the term MRE until I came to this forum.

Since you seem to be kinda familiar with the drugs, (and no, I'm not seeking a professional opinion here, just one that's relatively informed): what drugs are aimed at Crohn's?

The GI specialist did say I might have a stricture, due to the impassibility of the dummy pill. My understanding is that is thickening of the intestine on the inside of the intestine? The first CT already confirmed thickening of the intestine.

I live 30 minutes away from Lawrence and they are supposed to have one of the best schools of medicine and there's also a hospital in Kansas City.

I'll give this doctor a chance first, but I will tell him I don't want another small bowel series without a valid reason (will frame it nicer than that so I don't get his back up).

 

[Patricia56]

Pentasa is basically just a slightly different formulation of the same drug you are on now.

If he has access to MRE's then I truly don't understand the reliance on SBFT and CT scans unless he is "old school". MRE's are pretty much the current standard of care due to the radiation loads. The last doc I met who relied exclusively on those was in his 70's - nice guy but he also thought it was perfectly OK for my son to continue to have bloody stools while he was in "remission". We went elsewhere and my son got appropriate treatment.

There are a lot of different meds to treat CD depending on the individual circumstances but the most common meds fall into three classes. There are steroids (prednisone - systemic and budesonide - topical). There are immunosuppressants (6-MP/AZA/Imuran or Methotrexate). And there are biologics (Remicade, Humira, Cimzia a couple more not often used). You can do a search and read more about them in the Forum Wiki.

 

[Eternal_Howl]

Thanks Patricia. I'm going to discuss the option of an MRE with him next time I see him (in a few weeks). Thanks also for the other information on drug treatments. I will do some reading on those and try and match with my symptoms. I'm a bit wet behind the ears with a lot of this stuff, but am fairly confident I know my body enough and am trying to look at things logically.

I'll stay on the prescription I've already filled until I see the GI specialist. I don't know that he is old school. He has written a book on probiotics for dummies and he has a probiotic he markets (he didn't offer it to me). But it just seems things might start to go around in circles and I've already seen the frustration of many of our other forum members and what they've been enduring. I'm trying to avoid that as much as possible and also keep my job. All these appointments and tests are not conducive to a steady work life, if you know what I mean.

 

[AmyIsHere]

Hi Eternal -- I can't really add anything of substance in regards to your questions, but saw you're in the KC area. I am on the Missouri side and work in downtown KCMO. I'm also in the process of getting a diagnosis, with my colonoscopy scheduled in two weeks. Good luck!

 

[Eternal_Howl]

Hi Eternal -- I can't really add anything of substance in regards to your questions, but saw you're in the KC area. I am on the Missouri side and work in downtown KCMO. I'm also in the process of getting a diagnosis, with my colonoscopy scheduled in two weeks. Good luck!

I'm over in Topeka, but it's drivable. Best of luck with your colonoscopy. I hope your procedure yields some answers for you!