Singing and dancing through
life, adversity, cancer,
and abdominal adhesions.
I know you’re asking yourself why do I want to know about abdominal adhesions? Why do I care? They are fascinating little structures created by the human body. Someday your knowledge of these little guys may save your life. Also…it’s this month’s blog topic.
Abdominal adhesions are the body’s response to…
During one of the previously listed scenarios, the body lays down a layer of collagen to help stabilize the injured area. For instance, let’s say you have just come out of surgery to repair a damaged section of small intestine. Like racing ambulances to the scene of an accident, the body sends valuable raw materials to the site of compromise to help heal and repair the broken tissue.
Think of scaffolding on a building in NYC…Same concept
The structures help hold the organs or muscles in one place during the healing process. They are good at their job and can hold 2,000 pounds per square inch of weight. How incredible! However this yields two outcomes:
Scenario A: In two weeks, the matrix of collagen dissolves back into the body and things return to normal.
Scenario B: When the support-structured strong-as-steel matrix fails to reabsorb at the site of injury you are left with permanent additions to your anatomy. *See the spiderweb like structures below.
Sometimes they are thick, sometimes it’s like a film that covers the area, but after enough of them you start to get some serious issues…including severe digestive symptoms, chronic pain, fatigue, complete and or partial bowel obstruction and compromised movement. Did I mention depression? I was seriously depressed….pain will do that.
Here is a fun fact: The human body has no mechanism to deal with pain. It’s a divine whisper leading you to make a change in your life and give your body a rest.
The Big Picture…
In 2007, I underwent a Retro Peritoneal Lymph Node Dissection or RPLD which removed 9 tumors from my abdomen to treat testicular cancer. First let me relax that confused look on your face and assure your my testicles are not geographically located in my belly….I am special, but not in that way…the disease simply progressed to that area.
This surgery is highly invasive and they basically give you a new belly zipper (that’s my medical term).
2007 U of R Medical Center
Since 2007 I have been to the emergency room 8 times with partial small bowel obstruction.
Defined: the bowel becomes blocked by scar tissue. Food, liquids, and gas are unable to pass through your small bowel. The body induces vomiting to try and clear the food in the other direction until blockage is resolved.
Normally the tissues release from spasm on their own (until then you throw up bile and stomach acid) and this can last for 3 days. In 2011, I experienced a complete obstruction and underwent an emergency resection. “The bands of adhesions decided never to release.” The emergency room procedure was a life-saving resort to keep my small intestine from rupturing and spilling into my abdomen…not something you want. The ER surgeon removed the intestine, the primary abdominal adhesion, and I was stapled back together.
*A review of 18,912 patients with open abdominal surgery found 14.3% had obstruction within 2 years, with 2.6% requiring adhesiolysis. Other studies demonstrated that over one third of patients with obstruction presented within 1 year of surgery. (1)
2011 crew at New York Presbyterian. 2nd opening of abdominal wall.
One and a half weeks after surgery I was vomiting bile and lying on the floor as many as 2 times a week. #TeamHeartbreaking. Apparently it had grown back more and with greater density.
I have had 20-30 nights where I simply decided to “tough it out” on the bathroom floor and wait for the seizing tissue to release and let everything pass. Let’s face it…it’s cost effective and the only thing you are getting in the ER is some really expensive I.V. electrolytes and bad sleep.
This happened while performing in these productions around the country: Barnum, Dames at Sea, Billy Elliot; Annie Get Your Gun, etc. Luckily, I never missed a show as my obstructions usually happened late at night. I’d drink water through the next morning and push through a weary matinee or find places to rest in between scenes. Usually a day of water-fasting and gluten-free chicken broth would give my intestine the rest it needed. #WhatIdidForTheLoveofTheaterJesus
I have seen 12 specialists in the field, all of who offered no relief. 2 specialty surgeons in NYC who refused to touch me with a ten-foot pole claiming I was a liability. #Truth. I have missed birthdays, parties, shows, important events in my life and those of my friends. In fact, I rarely even go out to socialize anymore. It’s often uncomfortable to sit and just being still brings the awareness directly to my issue. This “issue” has made big parts of my life I used to enjoy feel bad and isolating: Including but not limited to eating, drinking, and social activities. Not sex though. Sex is still ok, so I have that going for me….”which is nice!”
I had explored and exhausted every option to try and avoid surgery to correct this issue. Including diet, enzyme therapy, massage, acupuncture, meditation, a few wacky devices for pain management and thousands of dollars in supplements.
In April I visited the clinic know as Clear Passage. The only center of it’s kind in the world claiming to be able to reverse the pain and limiting nature of these adhesions. They have published documentation supporting this and offer one of the only alternatives to surgery. 20 hours of therapy in April and then 10 more hours in July. From april to september I spent 20-30 minutes a day stretching the surrounding tissues and muscles by laying on a softball. Everyday, holding the highest hope and vision this would be an answer for my pain. And while I did get some great improvement it did not always last and the $10,000 price tag out of pocket stings a bit after my current situation. The center claims to stretch and sometimes break apart the adhesions and allow for movement in the bowel again. I found that as soon as I started dancing, moving, jumping and living my life again…my muscles would tighten and with them the connected adhesions. Improvement was there. I have to say the clinic took me from wanting to die when I was really, really bad to intermittent pain and mild constant discomfort. The improvement however proved to be fleeting and the thought of laying on a softball for the rest of my life before breakfast was not appealing, especially if the improvement was limited. I do believe the clinic does amazing ground breaking work. They have given women the gift of child birth by unblocking scared fallopian tubs and eased the pain of many weary travelers. Everyone at the center I saw and spoke with was kind, professional and loved their job. It feels like someplace you’d want to go and be healed. For me, I would not consider it a success and I had to look elsewhere.
In the midst of this health crisis I managed to log some serious stage time again in Disney’s- The Little Mermaid, A Christmas Carol and recently completed a 5-month contract with The National Tour of Phantom of The Opera. This once-in-a-lifetime experience brought the structure and joy I needed to make it through the day. Theater gave me a reason to get out of bed, I had a reason to smile, I had a family of dynamic artists filling my heart, and more importantly I had an outlet for my frustration and anger. Art therapy, people. 🙂
A typical morning:
7:30 am meditation and gratitude journaling
7:45 am Yoga and stretching to mobilize abdomen
8:00 AM: 20 mins. of abdominal massage/ laying on a softball on areas feeling “stuck”
8:30 AM: Hot water bottle and Castor Oil Pack-(if you have not tried this, it’s incredible)
9:00 AM: Cooking breakfast- something soft or blended, always made from scratch and packed with nutrients.
12:00 PM: Leaving my Airbnb to head into the theater. Due to the fact that I needed a kitchen I never used the company hotel option which never had cooking amenities. I would Uber, or walk or rent a car if need be to accommodate my travel and grocery shopping.
2:00 PM: Show #1- Finding various spaces in the theater to again mobilize are free blocked sections of intestines, stretch surrounding muscles, and breath. Cry in the stairwell, compose and return to work.
5:00 PM: Hustle home to blend dinner. 30 minutes on a heating pad
8:00 PM: 2nd show. Soft fluffy Gluten free Banana Pancakes for dinner. Rest and repeat.
It had become more intense and ever present. If I scroll back through my journal I can see the days of pain free bliss are few enough to count on one hand. It had been almost 4 years since my laster operation and things had gotten progressively worse. Pain had recently reached an unacceptable level. I had cried all the tears and could not go to the bathroom without the aid of an enema. Embarrassing. So when the reoccurring thought of living to old age felt hard, and burdensome…I heard the alarm clock go off. The future held only the ideas of impossible obstacles I would have to overcome be it a family vacation, a trip, work away from home. The challenge of how I would eat and exist with the smallest amount of pain was my only focus. You can see where this is going.
While on tour I finally bowed (to the dose of 100 x-rays worth of radiation) and got a CT scan of the abdomen and pelvis. My fear was materialized in black and white. There were several depressed loops of small bowel and a clear blockage of the small intestine exactly where I felt a majority of my pain.
This is no way to live, and my last option was surgery which consisted of another surgery either laparoscopic or open belly in which the fibrous like tissues would be cut away restoring the mobility of the affected organs. The big downside to surgery or risk is the continued pattern of adhesion formation after every surgery. Many studies including this PubMed Study have reported that up to 94% of patients develop primary abdominal adhesions following laparotomy. This we know. This I know.What option did I even have?
It was clear I was ready for a reboot and at this point I would be happy with a year or two of pain relief. A year? Shit I would have taken 6 months.
Enter Dr. Brian Jacob.
Through a system of referrals my case was handed over to one of the best laparoscopic surgeons on the New York City…Dr. Brian Jacob. I came prepared as a good good patient should…. armed with all the information I have collected in a three ring binder which included CT scans, barium contrasts, small bowels series X-rays, and surgery reports, stool analysis and blood work.
Note to fellow patients: Save time and followups by bringing all relative documentation when traveling between practitioners and hospitals. This figures into a better percentage for survival as calculated by the medical community. #knowledgeispower.
In the first few minutes we spoke I knew this was my guy. I felt confident he was going to be able to clear some scar tissue and avoid the 55 staple pot hole previously made in my stomach. The plan was to go in through 4 small -5mm incisions, examine the previous resection to see if it needed to come out and then follow the entire length of the small intestines looking for adhesions. Again this would be done with instruments. No human hands would be inside me (thats what she said) and my time under anesthesia would be kept as short as possible. Quote: “I don’t do surgery unless I can help someone, and I can help you.”
I felt at ease. I scheduled the procedure that day and I did it. I did it.
5…Count them 5 loops of bowel completely attached to the abdomen wall, and psoas on the right side. *This would explain the the increased pain a day after leg day. It was like a veritable pretzel. The real question from anyone on the surgical team at Mt. Sinai was how I was walking around or eating anything. Not only was I walking and eating but singing and tap dancing all over the globe. I was performing 8 shows a week. I was flying in harnesses. I wore bird costumes. I sang at senior centers. I, despite the massive amount of pain I was in, was living my life to the motherf@$#ing fullest. I knew, even on the darkest day I had love to spread. I knew people were showing up to escape their day for a few hours and needed a song. Purpose trumps pain. That is my takeaway.
Bonus Number #1: unlike my previous scars these were like bug bites.
The adhesions. This is my intestine stuck to my abdomen just right of my belly button. This is Fred’s angry adhesion.
Free unattached tubes that just scream “let’s digest food!”
Weight Gain: July 2015 to November 2015
The happy Belly
The Amazing Takeaway
If your still reading…you must have a lot of time on your hands. I know it’s a long post but I know the best take away from this is to put the information out there in good format, so someone else going through it can benefit. Do you know how many nights I would have died a happy man to find this after hours of googling? In fact, I have yet to find anything in the way of patient friendly dialogue concerning the matter. Other than the fact that if you have this condition, your f*$@ed. Thats the purpose of this blog; to not only discuss the victories, but also the defeats in terms we can all understand. Information is power. I consider this a strong victory. A win.
My pain is greatly diminished and I have already added more foods back into my diet. My sleep, mood, and overall outlook on life are also better. I know surgery is not a magic bullet.I’ve almost gained 13 pounds back in a little over 2 months.
The reality is that my body has continued to grow excessive scar tissue post every surgery I have had. Dr. Jacobs would like to see me have 3-5 years of pain free living before we have to do this again. Given the alternative…I’ll take it.
The additional heart explosion reality about this whole experience is the out pouring of love, texts, cards and messages I still continue to receive. It’s nothing short of incredible. The love I have received form my friends and family is endless. It’s one of the great comforts of life that AMAZING people continue to show up…again and again and again. In a world that can be as ruthless as it is beautiful…..these people make it all worth it.
Prevention and balance: Adhesion tips and protocols
As a preventative measure and to maintain mobility, I am keeping with a regular yoga practice. I’m holding most stretches at least 2-5 minutes to allow an elongation of muscles and connective tissue. I also try and get at least 20mins of meditation every few days. It really helps with the PTSD like symptoms of repeated visits to the cutting factory. Both these practices make me less reactive to the pain and I can take it for what it is. It allows me to stay more even and not let my mood follow the day to day fluctuations in my health.
High doses of proteolitic enzymes taken on an empty stomach can help with the formation of scar tissue and relieve the pain of adhesions. And while the pain did not subside I have NOT been rushed to the emergency room since 2012 or had a vomiting fit in which I was sick for a few days. For me they have definitely lessened the blow and made life at least manageable. I know people in support groups who are bed ridden with reoccurring adhesions and it’s heart breaking.
Currently use Sersapeptase 40,000 I.U. 2x a day on an empty stomach.
Nattokinase at 20,000 I.U. 2x day (2)
Having limited motility had given me a bad case of unbalanced bacteria. Essentially the good guys who were supposed to live in my large intestine had migrated into the small intestine and made for digestive hell in a young mans tummy. This condition is also know an SIBO= small intestinal bacteria overgrowth.
Luckily with a month of carefully selected herbs I am feeling much better and did not have to go the antibiotics route. The benefits of herbs to knock down these bacteria are many. Less carpet bombing style killing of good bacteria and a natural approach. For me they are also better tolerated than the standard 2 antibiotic therapy of Rifaximin and Neomycin.
My Herbs were as Follows: Duration 1 month
Neem Plus: 2 capsules 3x a day with food
ADP Oregano Biotics: 2 capsules 2x a day with food
Allimed 450mg: 1 capsule 3x a day
That’s all for now folks. I’m more than 2 months out and progressing nicely. I will continue to post updates on this entry for the benefit of like minded patients. Be well, Live well.
Abdominal Adhesions, Suck it.
Update: December 11th 2016…Over a year since my Laparoscopic surgery for removal of scar tissue and All is going quite well. I have had no emergency room visits and no level ten pain episodes. I am performing in an Off-broadway show “Cagney the Musical” in NYC where I standby for the lead. I have maintained my fitness business and continue to make the world a better place through my art, and inspired thought.
Physically I do have days of mild pain and do have moments where things get stuck. I am consistent with my abdominal stretches and continue to work for more mobility in the mid section.
I also continue with my enzyme regime as it seems to lessen any severe pain.
It’s easy to get discouraged and feel down when I am taken away from the days activities with intestinal pain, but I have to continue to focus on what I have and where I have come from. Things are much improved from 16 months ago when I could not even have a bowel movement without an enema or enjoy the idea of food.
Another area of improvement is the balance of bacteria in my gut. I have continued with a Low FODMAP diet. I still supplement with probiotics on a specific schedule to my body. Less inflammation in the gut, and less reactive to foods across the board….inch by inch and bit by bit…moving forward.