Anyone had luck with Mayo?

[DebE13]

So I just cancelled/postponed my capsule endoscopy with my GI. I have a new high deductible insurance plan now and the procedure would be around $3,000 I would have to pay up-front. I decided to cancel the appointment that is supposed to rule out Crohns (which I seriously doubt I have). I talked with the nurse and told her the financial reasons. In addition, many of the drugs overlap between Crohns and MC and I have tried them without success. She said this would allow them to move to the injectables. I told her with my cancer history I would be hesitant to try Humira because of the increase risk of cancer.

A week after that discussion, I received a call from my case manager (contracted by my employer to act as a patient advocate and I would imagine help keep insurance costs down) that Mayo Clinic is in network. She was excited that they are rated #1 in the nation for GI issues. I don't need a referral and I received a call yesterday from them and made an appointment.

The idea of driving 3 1/2 hours to stay in a hotel for an unknown period of time has me facing a bit of anxiety. I am not a fan of travel due to my limitations, planning how I will safely eat is overwhelming, taking time off work, and arranging care for my three pampered cats in my absence has my mind running.

Now I just told my GI that it was too expensive to complete his tests at this time and now I'm trotting off to Minnesota which will not be a cheap stay and there are no guarantees I will hear anything new. It keeps running through my mind that they will follow the same protocols that my GI has done. It's not like they have any magic secrets over there, right? Or, are they more progressive and willing to look at me as a whole? They will have more experience with unusual cases so maybe they will think of something my GI hasn't?

I am scheduled to for a consultation on a Tuesday and then they will decide which tests to run to develop a care plan my GI can oversee, which in turn, determines how long I stay. Testing has me on the edge because when I think of GI testing I think of the preps/clean outs that need to be done. I need to make a call because I am not doing another colonoscopy away from home. I had one done last fall so I would imagine I can bring those results with me along with the endoscopy and CT scan films. Hopefully, they will be satisfied of the quality and can review them without repeating there.

Then I think of all the conversations here...... I feel like if I were eating the right foods my MC should go into remission. That hasn't happened. So am I missing something or is there just more going on?

The biggest thought that just has me bewildered is that I achieved around two weeks of Normans while being treated for Lymes this summer. I did not change my diet from how I have been eating since 2011, I took the same dose of thyroid medication, I did absolutely nothing different aside from taking doxycycline. The anitbiotic was not the cause of my Normans because I tried it again last fall to see if the same results would be achieved and there was no change.

Looking for opinions if Mayo may shine some light on my very unique situation.

[tex]

Deb,

While the Mayo's record with MC is dismal at best (no one here has had any luck with them, ever), they have been rated as the number 1 GI department in the U. S. for years. So it's certainly possible that if you do have other GI issues, they might be able to find them. So it boils down to whether or not you feel that something else is going on.

If you decide to try them, but you don't want to undergo another colonoscopy, maybe they would accept having one of their pathologists reexamine your previous biopsy slides. That's usually an option at most places.

Good luck, whatever you decide.

Tex

[Gabes-Apg]

Deb
realist / sage gabes here

MC'ers achieving remission with diet alone tends to happen when MC is the ONLY health issue.

for those with multiple health issues, and health issues that are fluctuating and not stable, then attaining good remission is way way harder with diet etc.

It took me 2 years of focussed treatments (weekly / fortnightly) with super knowledgeable functional practitioner to get my multiple health issues settled and my body in a good state that my gut could do good healing. when we fixed the non MC issues (immune, adrenals, nutrient imbalances, reduced toxins etc) THEN gut healing and Mc improved.

keeping in mind that i made lifestyle changes to reduce stress.

I totally understand your strong desire to attain remission, albeit my thoughts are that you will have limited success GI wise while there are other issues at play.

[KSH]

Hi Deb,

I agree with Tex. Two years ago, after being very exasperated with my local doctors I decided to travel to Mayo in Jacksonville, FL to meet with a well known, well regarded GI doctor. I had high hopes that Mayo would be on the cutting edge of research and be able to offer me some alternatives that I wasn't getting at home. Mayo would not accept any of my colonoscopies, endoscopies or scans from other doctors. They wanted to do their own tests so I had to have them all redone. In the end, there was nothing new that they provided me with...not even the hope that new research that was being done in this area. I left very discouraged and deflated. If you decide to go I hope you have a very different experience--maybe there is something new out there in the last two years. Best of luck with whatever you decide!

K

[dfpowell]

Hi Deb,

I went to the Mayo Clinic for a second opinion in 2013, and saw Dr Pardi. He does the research for MC, and his suggestion for me was to be on Entocort for as long as I needed. He did not give me any other recommendations, such as diet changes and supplements.
They did use the my colonoscopy slides, but I paid $800 for their pathologist to read my slides and changed my diagnosis from LC to CC.

Good luck with your appointment,

[Deb]

Deb, I have used Mayo as my PCP my whole life. Unfortunately, I don't think they are any more enlightened than most.

[skp]

I just receive the Mayo Health Newsletter, Feb 2018, and they had a full page on Microscopic Colitis. It was very disappointing.

First, they did not include constipation as being a possible symptom or condition of MC, but suggested that constipation was suggestive of "another condition."

They described MC as occurring in older adults having watery diarrhea that does not contain blood and that there may be cramping, weight loss, urgent bowel movements and stool leaking. The article said that MC is "fairly common in adults."

Possible drug causes: NSAIDs, PPIs, aspirin, initiation of a new drug.

Diet: "Other factors that can worsen diarrhea include consumption of excessive artificial sweeteners or, for those who are lactose intolerant, some dairy products."
No mention at all of gluten sensitivity, etc.

They offered no new treatments, just the ones we are all aware of (anti-diarrheals, Pepto, budesonide, etc).

Susan

[tex]

Susan,

Thanks for sharing that information — it's disappointing, but not surprising.

Tex

[DebE13]

My mind has been going non-stop since I found out Mayo was a financial option. Thank you all for posting your experiences and opinions because it did confirm my strong feeling that this is another "carrot" that most likely will end in disappointment. I had the same feeling about the capsule endoscopy I just cancelled and the CT scan that I wasn't going to do but then ultimately did because I knew I was changing insurances at the beginning of the year and it was 100% covered. That came back like the first one I had in 2007- all good. I must stress how much I appreciate the kindness on this site where people offer their viewpoint yet do not become mean or judgemental about another's choices. So often it is the opposite on some sites I looked at and it is comforting to know that I always have a place here.

I've decided to cancel the Mayo appointment after sharing your comments with my husband and having a discussion. Of course, he is nothing but supportive in whatever I decide and can see my reasoning. He has witnessed and experienced the fall-out of ten years of struggles and disappointments. This past year in particular was full of the dangling carrots that gave me hope and then ultimately disappointment. It is the same each time I have a conversation with the GI office or I start a new medication..... my mood immediately falls and it's like being pushed in a hole that I have to claw my way out of. My husband has learned, like me, that the medical community does not have all the answers and it is indeed a medical "practice." I need to make an effort to change my behavior and stop reacting to conversations with my GI by becoming severely saddened. It was almost a relief to come to the end of the road of possible medications and just start getting used to the idea that this is my life. I don't mean to sound pathetic and I am not looking for sympathy, by any means because my life could be much worse. It could also be much better too.

I was sitting on the couch last night and looked across the street into my neighbor's window and saw her sitting in a wheelchair. I believe she had an amputation due to diabetic complications. I immediately felt grateful that I was dealing with MC and am able to work, walk, and do what I like, for the most-part, and am not bound to a wheelchair. I bounce back and forth with the idea that it could be worse but then there is always a fire within me that is not willing to accept that there is no more help for me. I live in an area that does not have a progressive selection of doctors. The functional doctor I did see actually made my condition worse (too many supplements, blood based food sensitivity testing that did not identify soy, not a clear understanding of MC) so I don't know what step to take next that would be worth the investment.

I thought I may regret not going to Mayo but I've had the same experience with endocrinologists.... thinking if I went to a larger facility I would get a more progressive thinker coming from UW Health in Madison. Ultimately, and endo is and endo is an endo. I went through three of them. It took a opened minded PCP in a small town up north from me to agree to Armour. He wasn't thrilled but he had a bigger understanding than the specialists. It is not ideal since I have to have cancer follow up annually and we are keeping an eye on something in my neck. An enlarged or calcified node, possible undocumented surgical clip, cancer..... who knows. A specialist would probably be better but for I have no interest in their inflated egos.

I was thinking I should at least go to Mayo for the sake of a second opinion in all fairness to what my husband has to put up with daily. He rides the daily roller coaster with me and never complains. I think back over our summer and we didn't put the kayaks in the water once at our cabin up north. Just packing for the weekend trips and getting ready made me tired. We don't even go out for fish anymore at the one tavern that makes my cod safe for me to eat. The hour and half drive makes me tired and it seems like too much effort to go out. Slowly my world gets smaller because I don't want to leave the house. It's just easier to be at home and I wasn't much of a social person before I developed MC. I was thinking it would at least give him some peace of mind that we tried. The realist in me says it isn't worth the time, money, or effort.

One of my fears is what if it gets worse to the point I can't work? That would be a problem. Although, living in fear of what could be is not a very sensible approach. Since I stopped the numerous medications that were supposed to slow things down, I actually feel better and I am not having the night issues anymore. Maybe I just need a break from the constant focus on medication and what is or is not doing to help. I've posted my list before but I've added to it....

2007, dx with CC

Ranitidine (Zantac)
Hydrogen breath test - negative for lactose intolerance
Ciprofloxacin- 1 week
prednisone- 2 months (diarrhea stopped after 4 months and returned when meds were stopped )
Limit dairy, take lactaid, take fiber

Celiac- negative
Asacol- 16 days, made diarhhea worse

2008
Pepto- no change after 4+weeks
Immodium- no change, causes abdominal cramping
Budesonide- no change
Budesonide/colazal- made diahrea worse after five days
Budesonide/colestipol- made rumbling worse with night issues

2009
Budesonide- no change

2010-2011 tried alternative therapies- no change
Hydrogen Breath Test- negative for lactose intolerance
Probiotics- multiple brands
Prednisone (up to 40mg)- stopped working, caused bad side effects
Prednisone/cholestyramine

2012- 2017
Budesonide- on and off, not effective, did help with night issues
started GF, SF, DF, egg free diet

2013
Total thyroidectomy/papillary thyroid cancer- took over three years to work out medication
Took levothyroxine by Mylan, liothyronine by Perrigo, formerly by Paddock , Tirosint, currently taking Armour
Had so many issues getting medication worked out that I left my MC as is

2017
Lialda 1.2 gram tablets - made D worse
Colestipol
Entocort/Cholestyramine- no change
July 2017- lymes disease/3weeks Doxycycline 100 mg (manufactured by Actavis)
caused yeast infection in the third week
First completely normal stool since 2007, WD resumed after doxy was discontinued
Breath test for SIBO- negative but elevated methane levels
Metronidazole 250 mg tablets- no change, bad stomach pains
Atrantil supplement (balsamea Willd extract, Quebracho extract and Conker Tree extract)
Xifaxan 550 mg tablets - no change
Diphenoxylate/Atropine- no change, felt in a daze entire time
Doxycycline Hyclate 100 mg capsules (manufactured by Amneal)- no change
Robinul (Glycopyrrolate) 2 mg tablets- caused stomach ache and nausea
Robinul and Immodium- no change
CT Scan with contract- no abnormal results
Restore 3 (supplement for the break-down of biofilm) took up to six pills/day- no change
Viberzi- caused stomach to feel full, very uncomfortable, had WD but felt like there was no intestinal movement
FMT- 8 tries over a period of two weeks, no change

2018
Welchol 625 mg tablets- abdominal pain/bloating
capsule endoscopy recommended to rule out Crohns – have not done

[tex]

Deb,

I don't understand why your gastroenterologist would recommend a relatively expensive, intrusive test such as capsule endoscopy, when he could have ruled out Crohn's disease with a simple calprotectin stool test. Crohn's disease and UC are characterized by neutrophil infiltration, and neutrophils produce a protein known as calprotectin, which can be measured in stool. MC almost never causes an increase in neutrophil activity, so your MC wouldn't have influenced the test result. Has your calprotectin level ever been checked?

But looking for Crohn's disease is irrelevant anyway, (IMO), because the diet that works for MC has been shown to work for Crohn's as well, and the medications that you have tried are all labeled for Crohn's disease treatment.

Tex

[DebE13]

I think he just doesn't know what to do with me. That was my main question.... what is the treatment plan when the test comes back negative?

I have never heard of calprotectin before and know I have not done any testing for it. The only stool tests I have done were for parasites when I was first dx and for Entorolab.

I pointed out the medication overlap between the two conditions and that I have tried many of them and failed. The nurse agreed but then brought up the injectables, as she called it. At this point, unless the insurance wouldn't allow it without the dx, why wouldn't we just try the biologics and see if they would work? That's what we did with every other medication. The xifaxin and viberzi are not typically used for MC but he decided to go with the "what the hell, nothing else works so let's give it a try" reasoning. I'm being overly sarcastic..... just in that mood.

The nurse did agree the test may not be useful if I am not interested in trying Humira. She said she was only guessing that may be the plan and that he never actually said that was his thoughts. They were my thoughts though since the nurse had already brought it up at an office visit as something new coming for the treatment of MC and that she thought it may be worth a try but that was ultimately up to my GI to decide. He has never brought it up to me but I'm not sure it's worth the risk of the side effects.

I had papillary thyroid cancer and was lucky enough to need no further follow up to maintain my cancer-free status after my thyroidectomy. I was horrified I would have to go through radioactive iodine treatments. I did not. I do an annual ultrasound and labs. The thought of developing cancer again frightens me beyond belief.

That test might be worth asking about to see what his plans may be. Right now the ball is in my court since I declined due to financial reasons. She asked if I would possibly be able to go through with the capsule endoscopy yet this year and that they'd wait to hear back from me or follow up after a few months. It appears my treatment is on hold until I opt to to this test. Doing the stool test would keep things moving although I doubt if there is much left to do from their end.

I did have to laugh because as a closing comment the nurse asked if I tried peppermint oil. I actually felt bad for her because she was trying to be helpful and was very aware of my diet and all of the supplements I have also tried. They all must cringe when they see my name come across their desk.

[tex]

The calprotectin test is not the last word in Crohn's diagnosis options, but an elevated result is a very good indication of either Crohn's disease or UC activity, and it's bound to be a lot cheaper than pill camera endoscopy.

According to research, the TNF-alpha drugs (so-called biologics) are effective for MC. Exactly how effective I don't know because we've had at least a couple of members in the past that you may remember were using Humira or one of the others to treat psoriatic arthritis. According to (I believe Rose was her username, as best I recall) each time she received a treatment infusion, her MC symptoms became much worse for a few days and then they would gradually return to "normal", but the Humira (or whatever) never resolved her diarrhea. But the research article I read claimed that it was effective for MC.

I agree, deciding to neutralize one's immune system is a big decision. I couldn't do it — the risk of an infection is to great for me to be able to last very long without a functioning immune system. But a lot of people seem to do OK. Of course, when something does go wrong and causes a fatal infection, or cancer, or whatever, the autopsy report will never, ever state that the cause of death was a drug that prevented the immune system from functioning normally.

Tex