endoscopy/MRE results - IBD? Crohn's? WTF?

[Marie]

Quick backstory - local GI did colonoscopy and diagnosed LC. Tried loperamide, asacol, pepto, etc. Given the number of other autoimmune issues, GI felt more comfortable referring me to Univ of FL Shands a couple hours away. That GI seems very knowledgeable. A review of my records and a discussion of past and current symptoms led her to believe undiagnosed Crohn's was my problem. An endoscopy and MRE lead the GI to think it's Crohn's or some other variation of IBD similar to Crohn's. Here are those results in case anyone has any thoughts. We may need to repeat the colonoscopy to get a full picture of what's going on.

MRE:
On the T2 weighted fat-suppressed images, the descending colon from the splenic flexure to the junction with the sigmoid colon appears moderately thickened with mild bowel wall edema. However, on the pre and postcontrast T1 weighted images, the descending colon demonstrates a normal appearance. The remaining bowel demonstrates no wall thickening, abnormal enhancement, or wall edema. The terminal ileum is normal. There are no dilated bowel loops. There is no evidence of a fistula.

The visualized lung bases are grossly clear. The spleen, liver, gallbladder, pancreas, and adrenal glands are normal. The kidneys demonstrate normal enhancement without hydronephrosis or renal mass. There is a normal postpartum uterus. There is no free fluid in the abdomen or pelvis. The bladder is distended and grossly normal. The included osseous structure are normal.

Impression: On the T2 weighted images, there is a moderately thickwalled descending colon with wall edema; however, these findings are not present on the T1 weighted sequences. These findings are somewhat contradictory for inflammatory bowel disease (and difficult to explain). Lower endoscopy with attention to the descending colon is recommended for further evaluation.

Endoscopy:
Duodenum - mild chronic duodenitis with focal foveolar cell metaplasia
Stomach - antral and oxyntic mucosa with mild chronic gastritis; immunohistochemical stain for Helicobacter pylori is negative
Esophagus - squamous mucosa with basal cell hyperplasia and mild acute and chronic inflammation including scattered eosinophils.

Thanks to all in advance for any thoughts or suggestions.

[Stanz]

Well, Marie, you live in ground zero, IMO, of what is probably going to be the breakthrough for Crohn's disease, if that is what you have.

http://www.centralfloridafuture.com/new ... ?pagereq=1

I don't have links to the 2 recent studies I saw that showed a near 100% finding of MAP in Crohn's patients, as I have moved recently and my bookmarks for them were on another computer I don't have access to now, but when I have time I will provide them. UCF's Dr. Naser and his team developed the first and only blood test for MAP, then sold their patent on it to Red Hill Pharmaceuticals many years ago. Red Hill has now developed an antibiotic to kill the bacteria, and they began a 2 year study testing it on Crohn's patients in Oct. '11. If this antibiotic is successful, there is a cure for Crohn's that is only 1 year away. We've known that ulcers are caused by bacteria for quite awhile now. I believe that MAP - Mycobacterium Avium Paratuberculosis - is the cause of Crohn's and in my case is what caused my MC. I also believe it is what killed my paternal grandfather, who likely gave me my GS 501 gene that I passed on to both my daughters and 2 of 3 grandchildren, who have all shown the same symptoms I've had.

I will be the first person to take this antibiotic when it is approved, as I believe I have MAP, which is caused by a gluten intolerance that damages the intestinal tract and allows the bacteria to hide from the human body's natural ability to kill it. I've written about this here many times. Do your research, question everything your GI tells you.

Connie

[tex]

Marie,

I see no evidence of Crohn's disease in the information in your post. The duodenitis and gastritis are common for someone who has MC, and they are due to inflammation caused by gluten sensitivity, and associated with microscopic colitis. The thickening of your descending colon, proximal to your sigmoid colon, that showed up in one scan only, may be an aberration in that single scan, or it may actually exist, but if it exists, there is no reason to assume that it is an indication of Crohn's disease. FYI, when my guts were scanned, virtually my entire colon showed major wall thickening, but I did not/do not have Crohn's disease. Using that single bit of evidence as the basis of a diagnosis is what I call grasping at straws. I'm not saying that you don't have Crohn's disease, but the information you posted certainly doesn't indicate that you have it.

The important reports are your endoscopy report from the colonoscopy exam, and the pathology report that is associated with it. Those two documents will define whether or not you have Crohn's disease (or any other IBD). What do those reports say?

Tex

[Leah]

Have you ever swallowed a diagnostic camera, marie?

[Gayle]

Marie,

Just my opinion here --- but there appears to be is some question about the interpretation of your diagnostics. That is NOT earth shaking. Different people have different opinions, and/or see things in different ways. But the question also arises here because you are being prescribed a drug treatment that is considered to be a rather “heavy hitter” first, ostensibly because the Dr. you are seeing is “comfortable” with this drug rather than the lower tier drugs. (sorry if I am paraphrasing here?)

Also, you appear to be quite young … with hopefully a long life ahead. So it could be to your benefit to try to get some additional informed input on the diagnosis and treatment plan here.

Since you say you are being treated at Shands, I am making a huge guess here -- that you are located somewhere in the greater Gainesville area? And therefore, it would not be a huge trip to go up to Jacksonville to the Mayo Clinic for a second opinion.

You can do an internet search on the GI staff at Mayo/Jacksonville to find out which of the GI’s at Mayo/J claims having a special interest in the area of the Inflammatory Bowel Disease, and in particular, Crohn’s Disease. You can also take a look at their list of publications to see who has participated in research activities directly related to the IBDs. Your request would be to see one of those Doc’s specifically. That approach would get you more quickly to the best information possible. As you are not in a hurry for an appointment, it would be just fine to wait for one of the Docs of your choice, rather than just making an appointment in the GI department with just anyone --- which may get you in to see someone whose primary interest is really in liver transplantation ... It is not exactly that they have not had training in general medicine as well as general gastroenterology, but just that their area of focus and expertise will be in their interest area. After all, a Dr. is just like anyone else in that respect ... they are likely to be better informed about smaller and more specific details in their area of special interest.

If you do decide to pursue such an action, make sure you tell them that the reason for your requested appointment is for a 2nd opinion. You will need to bring along all records of all the tests that you have had that are related to this diagnosis.

Sometimes people “feel funny” about going “over the head” of their Doctor to seek another opinion. But actually, your current Physician should welcome a second opinion from another source because it sounds as though she is really not exactly sure of things due to some variability in the information your tests have yielded. And the staff at Mayo is very used to being consulted on a secondary basis. And further, your insurance should welcome another party looking at your situation. Second opinions NEVER hurt. Really – NO BIG DEAL.

Wishing you the best,
Gayle

[brandy]

Hi Marie,

I'm mostly thought I'd give a "hello" shout out!

The one thing I thought I'd add is that there has been some discussion in the past 3 months re: lyme disease testing and I believe some posters think one lab gives a more accurate reading than another that is commonly used. Perhaps search lyme to connect with the discussion.

I hope you can get to the bottom of things, Brandy

[KatheMaine]

Hi, All,
I'm so glad that I found this forum. I saw a GI specialist ten days ago and he suspects MC. I'm scheduled for a colonoscopy with biopsies in just a few weeks. In the meantime, I continue to live in limbo, never knowing when my symptoms will keep me in the bathroom for an extended period of time (often 3-5 hours).

I was diagnosed with sarcoidosis (which started in my lungs) several years ago and was on Prednisone for 18 months (never again!). Turns out that the Prednisone probably held the GI symptoms at bay. I was weaned off the Prednisone only to have the GI symptoms return with a vengeance. Makes sense but not fun.

A colonoscopy in 2010 was normal (but no biopsies done). The surgeon looked at my blood and discovered the markers of Celiac. So I've been GF since then. Over the last 2+ years I've had to become increasingly vigilant and my gluten sensitivity has increased. Grrr!

I'm so tired of feeling like my body isn't my own. The GI symptoms are controlling my life (not to mention the sarcoid). http://www.perskyfarms.com/phpBB2/image ... lleyes.gif Recently one of my food triggers seems to be fats. I'm sure I'm not the only one here with that problem; I'd love some suggestions.

Never thought I'd be looking forward SO much to a colonoscopy! I want to confirm the Dx and figure out with my doc how to treat.
Thanks so much for listening!

[cjbndtsn]

Welcome
You've come to the right place.......I'm pretty new to this as well so I can only suggest that you read read read the posts here in this forum. The amount of info you will gain is invaluable. Ask them anything and good luck with your colonoscopy. They truly are your friends during this difficult time.

[tex]

Hi Kathe,

Welcome to the board. It's a crying shame that most doctors aren't knowledgeable enough to be able to diagnose gluten sensitivity early on, because it's now apparent that all your autoimmune issues were caused by your untreated gluten sensitivity (though it's probably not apparent to your doctors ). At least now you may be able to get to the bottom of things, and stop any additional autoimmune diseases from developing.

Don't expect your GI doc to recognize that MC is associated with food sensitivities, although you might be lucky, and he or she is one of the few gastroenterologists who are beginning to see the light. Please be aware that most of us here are also sensitive to casein (the primary protein in all dairy products), and about half of us are also sensitive to soy and most other legumes. Some of us have additional sensitivities as well, but gluten, casein, and soy are the worst offenders. Hopefully, once you get your diet perfected, the symptoms of your previously-existing autoimmune diseases will greatly diminish, also.

Again, welcome aboard, and please feel free to ask anything.

Tex

P. S. To add one of the emoticons to your post, whenever you get to where you want to add it, just click on the emoticon that you want to select, and the system will automatically add the proper code to your message.

[KatheMaine]

Thanks for your responses, Tex and CBJ. I'm actually very fortunate that I have a very knowledgeable doctor and I like him very, very much. I advocate for myself and my GP made sure that we got me off of two long-term meds I'd been on (one at a time); both of them are known to cause diarrhea when used for a long time.

It is a shame that the autoimmune diseases like to domino onto each other. I'll be very glad to get this latest saga figured out!

Thanks again !

[Leah]

Hi Kathe. You're right, it will feel good after you know for sure what you are dealing with.

When you mentioned oils, I thought I would share my experience. I too seem to react to certain oils. ..... like vegetable oil ( soybean, canola). I now try to stick to olive oil and coconut oil which seem to work well for me. Foods in restaurants (fried) can be problematic for two reasons. They are using cheap, bad oil and other gluten foods were also fried in the same oil.

Also remember that since your gut is inflamed right now, eating raw fruits and veggies ( salad) will probably cause you problems. Might want to steer lear for now.

Keep us posted
Leah

[Marie]

Tex,
Unfortunately, I don't seem to have a copy of the most recent colonoscopy report. All I remember is that procedure delivered the lymphocytic colitis diagnosis. We are exploring the possibility of having our new GI at Shands redo a colonoscopy given the recommendations of the endoscopy and MRE results.

Leah,
I assume the endoscopy involves swallowing a camera?

Gayle,
We live in Tampa Bay and travel a few hours to Gainesville. We are in the process of looking for a second opinion; we've heard mixed reviews about IBD management at Mayo but they are certainly an option for a second opinion.

Hi Brandy,
I just had a visit with a local LLMD and plan to provide samples for labs on Monday. They'll be going to Igenix for analysis. Doc certainly seems to think that lyme is a possibility and some symptoms are indicative of bartonella coinfection. He wants me to start two weeks of doxycycline and alinia to see if any of the joint pain or other symptoms improve. After a round of treatment we should have the lab work back to give a more complete picture. Recent research has led me to a larger investigation of l-form bacteria and its role in chronic diseases including lyme, crohn's, colitis and the other conditions that many of us share. I'll try searching this forum for "marshall protocol" before asking anything specific but I do recall reading about this treatment philosophy earlier this year.

[PJ]

Hi Marie,

I have been following your posts and can empatheze with your frustration of not having answers. I'm glad you haven't given up and are still working hard to try and unravel the mystery of your illness(s). Best of luck to you and keep us posted on any developments.

My best to you,

Pam

[tex]

Marie,

FWIW, the GI department of the Mayo is the highest rated in the nation, according to US News and World Report. That said, I have to agree with you that all of the members of this board who have been treated for MC at the Mayo, have been impressed with their thoroughness, but they were totally underwhelmed by the treatment effectiveness of the Mayo's GI docs.

http://health.usnews.com/best-hospitals ... -disorders

Please be aware that we have several members who are convinced that their MC was initially triggered by an antibiotic treatment program for Lyme disease (despite the lack of proof that they actually had Lyme disease). One of those individuals is Polly, who as you probably know, is an MD. The point is, a treatment with doxycycline is not to be taken lightly. If you are sure that you need it, then it may be a matter of doing what you have to do. However, taking doxycycline (especially for an extended period), just to see if it might help, can be a very risky procedure for those of us with genes that predispose us to MC (or other IBDs). I'm not sure that your doctor understands the risks involved, so I wanted to be sure that you are familiar with them. With this disease, it's never a good idea to take an antibiotic, "just to see if it might help". That said, I totally agree with you that when nothing is helping, doing nothing is certainly not going to help either. We have to keep trying to find a solution that works for us individually, (hopefully, a safe solution).

Regarding the colonoscopy report that you mentioned (that you couldn't find), consider that it is extremely common for GI docs and pathologists to fail to diagnose MC when it is present, but it is also extremely uncommon for a pathologist to mistakenly diagnose MC (when it is not present). IOW, you can count on a diagnosis of MC as being virtually 100% reliable, whereas a failure to diagnose MC is very common, and it often means that the GI doc did something wrong when taking biopsy samples, or the pathologist simply doesn't understand how to diagnose the disease. In some cases, even though the pathologist diagnosed MC, the GI doc, (in his or her unbelievable audacity), ignored the pathologist's findings, and told the patient that there was no evidence of any problems (because the interior of the colon looked OK to the doc through the scope. ) We have several members here who actually had that happen to them.

Good luck with your plan, whatever you decide to do, and please keep us updated. We learn the most from the toughest cases.

Tex

[Gayle]

Marie said:

We live in Tampa Bay and travel a few hours to Gainesville. We are in the process of looking for a second opinion; we've heard mixed reviews about IBD management at Mayo but they are certainly an option for a second opinion.

Well Marie, my guess on your location was definitely off, -- you are a good distance from Gainesville, and if you are commuting up there from the Tampa area by car – it is a drive. Tampa to Jacksonville is further -- would perhaps be better by air, and that could be a easy day trip that way. But if leaving the Tampa area for another opinion, you may as well go for potentially better rather than just closer. Just my opinion.

Tex said:

That said, I have to agree with you that all of the members of this board who have been treated for MC at the Mayo, have been impressed with their thoroughness, but they were totally underwhelmed by the treatment effectiveness of the Mayo's GI docs.

Happens that I had to go to Mayo (Scottsdale) for another opinion after a very reputable GI practice here failed me miserably regarding MC. My experience at Mayo was definitely not underwhelming – rather was quite overwhelming. I not only got a nearly ½ hour lecture from the Doc on MC, --- from anatomy and physiology with all his charts and graphs, to potential causes and what they believe to most likely be the culprit (but do not know), to the drugs in their tiers for all GI conditions, and how they like to approach using these drugs. I was also extremely fortunate to have an amazing amount of help and support from the RN who did all telephone triage with his patients. (The Doc was excellent, but it was this RN that was my real hero --- as she faithfully and patiently talked me through and out of the woods.) Was I just the "lucky one"????

Having said all that, I am positive -- God does NOT exist in a bottle anywhere at the Mayo Clinic. But the medical staff there does have the opportunity and privilege of being employed (yes, they are all salaried employees) where they have access to volumes of information as well as there being held to a much higher degree of collaboration being possible and encouraged among the staff, than is generally possible in private practice. There are of course some drawbacks to the Clinic, which many people do not like. Mayo is both a Research as well as a Teaching institution, which does place certain additional expectations and demands on patients. Some do get quite irritated by this.

But no matter where you should choose to go, the most important aspect is that you understand fully the nature of each diagnostic procedure, why they are doing it – and then -- what the results say to them. The same with regard to any/all treatment recommended. A person (patient) should not be spending time and money only to have to deal with medical people who can not explain satisfactorily, what they are looking for, why they think what they think, and what they find, and why they choose a specific treatment plan.

But what I think (???) I have heard from you so far is that any real understanding is not there because you either do not have the reports, or did not totally understand reason for a drug etc. Either this GI Doc has not explained her thoughts, motives and reasons for treatment selection to you very well, or maybe she has -- but you have just not been able to understand her in the way she has tried to explain – in which case you would be more than justified in explaining to her that you don’t think you are understanding any of this. What is she talking about? No need to be difficult, just not really comprehending what she has said! Could she please try another way.

AND it is most important, especially when you are going “out of system” for any health care, no matter where you go, that you have ALL records of previous events, ALL diagnostics and ALL attempted treatments. It is your right to have access to ALL this information, to have a copy to take to any other provider, ... and expect them to look at it.

Wishing you luck what ever you decide.
Gayle