Mayo Clinic was a bust - maybe

Submitted by maleissues on May 13, 2014 - 7:51pm
Body: 

Hi everyone,

I am back from Mayo. And I did not finish my week with them (came home early). I liked the dr. with whom I met pretty well (not well enough). But I got the sense, and he pretty much told me so, that he couldn't help me. Or at least he was going to throw all the pharma at me that I had previously tried over the years. He did recognize that my pain and dysfunction are real (not sure if I am pleased by this or not), but I also found that Mayo doesn't seem to want to be more creative, or investigative, or think outside of the box, any more than the Cleveland Clinic. I had to pretty much beg him to do an MR Defecography on me, which he agreed to do finally, but couldn't get us in until Friday (and we arrived Sunday!). So as I thought about repeating all of these tests, less a flex sig, that I had at Cleveland Clinic a year ago, I decided it wasn't worth the waiting or the expense to go through all of this again.

I did agree that the flex sig was a good idea to see if my Lymphocytic Colitis is still active, but I know in my heart (and my rectum) that that is not causing my obstructive symptoms and the only way to control this is by an elimination diet (or steroids and I don't want to be on those). Plus, I can get this done at home much more economically. I could tell that the doctor's nurse thought I was crazy and high maintenence by backing out of all of this. But neither she, nor he, has to live with what all of us on this board are dealing with. I think the following video needs to be viewed by all medical care givers.

https://www.youtube.com/watch?v=cDDWvj_q-o8

The GI doc also said, as did the following dr. in my discussion, that I am a subset of a subset of patients with such a problem, i.e. women get more attention than men because "there is more to go wrong" in a female's anatomy than a male's, and they just don't see nearly as many men coming to them for help. So lucky me in being the minority in this problem. Which is why I feel I have to self-education and solve my own problem.

But in the mean time, I found a Dr. John Bray, radiologist, at Cedars Sinai in LA. He is controversial and I like that. He has several on-line lectures about obstructed defecation (I watched them all) and explains and illustrates the mechanical (plumbing) reasons why this occurs and he also shows it in defecography (which almost all radiologists fail to recognize when they read the results). Well I spoke with him today on the phone and what a great man. He requested my video of my defecography from Cleveland to review my case. Bottom line is that his patients fit my symptoms exactly. He also believes that IBS, in many cases, is actually on obstructive condition that is wrongly diagnosed, ignored, and mis-treated. He also said that men are neglected.

So I am hoping that he can see my problem visibly in my old test results, and if not, then I hope he will be able to perform his version of a defecography on me. I wish Mayo could have done their MR Defecography on me but waiting until Friday made no sense to me, especially when that test would not have been performed in the way Dr. Bray does his test. But I still would have liked to have seen what it would have shown. Regardless... What's done is done there.

So what can be done to correct me if he finds my problem to be a "kinked rectum" so to speak? Well that could be surgery, and I know that is not recommended here. But if the condition he describes and illustrates is shown in me, I think I am indicated for surgery. And whether or not I go that route will be up to me, as I am getting acute. But as an engineer who is trained in forensic engineering for a career (i.e. I use data to find the root cause of challenging problems), I really can wrap my head about the condition he describes and the dynamic forces that act upon the bowel, why the condition occurs, and how it can possibly be corrected.

My wife went with me to Mayo, bless her heart, and fully supports me. We have both grown accustomed to dealing with medical issues together so we also joke about our vacations being centered around physician appointments. She also watched Dr. Bray's lectures and agrees I made the right decision. I really appreciate her perspective on this. She was a good listener.

So, I am very interested in what all of you think. I look forward to your responses.

Forum:

dizzydee

May 13, 2014 - 8:47pm

Sorry to hear about your trip being a bust. That would have made me very upset. It's great you found a Dr. that can get you going in the right direction. I am not very "versed" in your condition so I am not one to make any judgements. I would research and talk to this doctor...then make a decision that will fit your needs. Hope you have found the right path....

Aging gracefully

May 13, 2014 - 8:59pm

Hi maleissues,
It certainly sounds like you have investigated this thoroughly. I would be interested on Christine's perspective on the surgery, though. She has a much more vast knowledge of these things than most of us do.
I just wanted to wish you the best, and hope that everything works out for you.

maleissues

May 13, 2014 - 9:11pm

Hi Dizzydee,

I was upset at first because I had high expectations for them - but I also knew they would be limited in their knowledge and acceptance of what we discuss on boards like this. But I had to see for myself. The other doctor I found thinks and behaves more like I do, plus, I think his research is credible.

Hi Aging Gracefully, good to hear from you too!! I am also very interested in Christine's perspective... though I think I already know where she is on this. I guess to satisfy me, I want to see my problem illuminated on a radiographic study. I am an evidenced based person. Need to see it to believe it. Although I know that my symptoms clearly suggest what my problem is.

The following link is one of Dr. Bray's video discussions. It is "medical lite" in that he makes the concept easy to understand and is also very illustrative. I find I have to break technical terms down into simpler discussions as well - in a similar manner as Dr. Bray - when I am trying to explain my point to a jury.

https://www.youtube.com/watch?v=-dY8Ya9hBj8

I do sometimes think about a second career in medicine - especially lately. I think doctors need better investigational skills. I would love to bring this way of thinking to their world. I think I would be a very empathetic and compassionate GI doc. One never knows...

Aging gracefully

May 13, 2014 - 9:42pm

Interesting video. Don't think I've ever seen a picture of a rectum kinked up like that. So that's what the doctor is telling you that you have? Does he say how the rectum gets kinked quite like that?

maleissues

May 14, 2014 - 2:22pm

No... That is what I think I have going on. And I need Dr. Bray to show me on a radiograph.

Aging gracefully

May 14, 2014 - 2:53pm

Well, I certainly hope yours isn't as kinked as the one he describes on the video. It seems so frustrating and painful! I do really wish you the best with all this going on, and that I had more to contribute, but this is way out of my league, I'm afraid. But, at the same time, please don't be offended, it is a great curiosity to me. I will be thinking of you on your continued venture.

ilovewings

May 22, 2014 - 7:29am

what is obstructed defecation? I am interested because I have been severely constipated for 30 years. Actually I am obstipated and can only go to the bathroom with magnesium capsules.

ilovewings

May 22, 2014 - 7:40am

I watched that video and believe that is what I have. I can only poop a teeny little bit on my own; I have always believed that the area is narrowed and will simply not allow much stool to pass through it. The magnesium gives me watery bowel movements. So what is the solution for this? is there any fix for it? I am 70 years old now and not interested in a bunch of tests. I would like to know if there is a "cure" or way to manage it. Very interesting and glad you brought this topic to this site. thank you.

wholewomanUK

May 22, 2014 - 7:42am

Hi maleissues,
Welcome to the site. It's great to have amale contribution. Of course men also have pelvic organ prolapses. Men just don't have female reproductive apparatus!
I'm concerned it sounds as if you're 'down for surgery'. I thoroughly recommend you try the WW approach first. I think this name may need to change to 'whole person' approach at some point, because not surprisingly the basic principles apply to men just as much as to women.
So the WW or Natural Posture is as relevant to men as it is to women. Many of the WW treatment applies to men as well. It is a holistic approach which embraces all aspects of our lives. Factors include, diet, avoiding constipation, straining go nt he loo, lifting too much/badly, good diet, exercise etc.
Personally I think it's always worth giving the WW approach a go. Then the surgical option is always a possibility but the reverse is not the case. Surgery has the potential to do harm as well as good, but the WW approach is safe, natural and for many people effective. It's healthy and natural and many people find they feel better after a consistent period of being engaged in this approach.
I throughouly recommend you buy the 'Saving the WW' book. Although this is a book primarily of women, there is no other book that I know of which has this information but aimed at men. So although that's not perfect, it would nevertheless give you a lot of information you may find interesting &/or useful. It would be great to have your thoughts and reflections on the book and the work, coming from a male perspective and experience.
Best wishes,
wholewomanukx

mom30

May 22, 2014 - 9:26pm

Have you looked into Resistant Starches or Small Intestine Bacterial Overgrowth?

Aussie Soul Sister

May 26, 2014 - 1:24am

Dear maleissues,
Thank you very much for sharing your experience.
Your ensuing discussion with others and Christine's input has greatly helped my understanding of bowel issues, and emphasizes to me the importance of WW & WMan posture, which allows the bowel the space to function the best way it can.
It also helps me & people around me with the very common issue of stomach/bowel pain/ constipation and elimination issues.
Keep in touch with how you are,
Best Wishes,
Aussie Soul Sister

Christine

May 26, 2014 - 4:10pm

Hi Maileissues,

I have only been able to watch Dr. Bray's video just now, as the last few weeks have been very busy. I find his interpretation of rectal anatomy very strange and confusing. To me, it appears that the woman's rectum and sigmoid colon are filled with barium. When she empties her rectum, the sigmoid is still full. The rectosigmoid junction is the only sharp right angle in the lower bowel. The human rectum is simply not long enough to make the two large folds he identifies as "kinks". "Compartment B" has got to be the sigmoid colon. That much "redundant" rectum would be an impossibility in my humble opinion.

What sort of operation is being suggested?

Christine

maleissues

June 5, 2014 - 7:42pm

Hi Christine and others...
I have been offline away. Had a defecography. Failed that. No surprise. Had a colonoscopy. My lymphocytic colitis seems to be under control for now. I will know more after June 10th as Dr. Bray is going to look at my motion radiographs from my defecographies. Also have the local radiologists offering their opinion soon. So I am still waiting... Will get better answers for your questions once I speak with him at length. Stay tuned.