Understanding Diverticulosis

Posted by twinklev

On April 1st I had another procedure to assist in finding out why the symptoms in my belly have worsened over the last year. It wasn’t a routine procedure. Prior to 2013, I was having upper stomach pain that came and went. Held at a 3/4 on average and would rise to a painful 8/9 until I ended up in the Emergency Department at a hard 10 and was admitted for emergency surgery to remove my grossly diseased Gall Bladder. So that I don’t go back into all that, those posts can be found here and ending here for the most part. My stomach never did get better. I was diagnosed with Gastritis during the ERCP in 2013 after my first Gall Bladder surgery, so I knew I had the issue of inflammation around the stomach lining. Reducing fat intake didn’t seem to make a difference, but I’ve kept to low to no fat on a regular basis. My kidney’s are no longer in the greatest shape, but they are functioning. The issues that took me back to the same Gastroenterologist was bleeding, pain, and months of diarrhea, after years of constipation. My tailbone has been clicking in and out-of-place for over a year more and more frequently. Worse when getting up from a sitting position or when on the toilet. I thought it might be due to the Osteoarthritis of the Lumbar Spine diagnosis I’ve had.

I knew I could also feel something inside me when going to the bathroom. As it turns out there was and it was removed during the Colonoscopy. I was diagnosed with Diverticulosis in the recto-sigmoid colon and in the sigmoid colon with colonic spasm. The 3 mm polyp in the sigmoid colon was resected and retrieved. Internal hemorrhoids were found as well, I think many of us have those, either internal or external. Either from constipation, strain or from having babies. I haven’t received the biopsy results yet. I am not worried about that, I’m just glad to have the annoyance out of me. Severe diarrhea has complicated things to the point my legs have a hard time carrying me to the bathroom several times a day and during the night. It’s unfortunate that sometimes there hasn’t been time to get there and I’m closest to the bathroom I can be. That symptom still nags me. I’ve been relying on my Spinal Cord Stimulator even more using it to mask the discomfort around my mid section as well as my legs. Newer reports suggest fiber isn’t as beneficial as previously thought but that mesalamine might be. This September 2014 Mesalamine for Recurrent Diverticulitis Prevention: Results from Phase 3 Controlled Trials report doesn’t seem promising. Everything else is invasive at the critical point. I gained a horrible amount of weight the last 2 years with little to no change in activity or eating habits. Swelling in my face is often, gray color to my facial appearance, a look of black eyes. My stomach extends to the point of looking like there’s a hill-top on one side or so swollen I’m harvesting a human in there. It makes sense now why the area where my Gall Bladder use to be has never stopped hurting. I’ve learned to deal with it and gastritis, the only time it knocks me down some is during a flare up. What I couldn’t fully grasp was all the extra that sprung up along with it.

Sigmoid Diverticulitis- A Systematic Review

Diverticular Disease of the Colon

The Colon

Over 14 years of CRPS type 2 from a mid-metatarsal separation. I’ve had several lesions removed from my liver, my kidney’s have declined, my uterus lining is inflamed, diagnosed by ultrasound and surgery, with a suggestion to have a hysterectomy. Stomach lining inflammation, and now colon inflammation confirmed. I’ve had an infection for over 2 years. My white blood cell count has been elevated above normal range. I’ve been treated for high blood pressure for a few years now with Lisinopril and recently put on Hydralazine for when it gets above 180/. Maybe a course of antibiotics will help my belly. I still have to followup. I was given 12 photos of my insides after procedure. I’ve been extremely Vitamin D deficient for years now with only 1 testing where I made it into the normal range. My blood is monitored every 4 months.

I have another report that will be ready on the 15th of the month. This one may have CRPS documented as part of the cause. It was at the feedback session. I underwent those tests awhile ago. Still have a few things to work on in regards to the sleep disorders, narcolepsy, brain, brain stem and other issues, but things are moving a long. I’ve been using an Auto Servo Ventilator for about 3 years for OSA, CSA with Cheyne Stokes. It hasn’t helped with the EDS, it has helped with breathing. It’s ability to record every breath I take, don’t take, deep breaths, short breaths and so much more is amazing.

I don’t contribute everything to CRPS, I know that it is part of what’s going on. If doctors aren’t going to consider them related and document it then how can I? I could never go to a new physician and say my insides are coming apart do to CRPS and them ask “who told you that?” and me say “I did”. I’d get laughed right out of the office or not taken seriously about what really might be true and most likely is. That’s why continued awareness, research, documentation, diagnosis’ and timelines are so important. There are many other’s who have developed similar health issues. If we help educate then eventually documentation will take place. We know there is literature to support internal organs being affected, but hardly any providers recognize it.

I’m not sure yet what the plan will be. I should know more this upcoming week. I need to verify too. My procedure photos I came home with are copies. In the copies it shows areas of white outs, white space and white dots, so on film that would look different. I need clarification. I just keep bleeding. JP drain in 2013 for internal bleeding, a hemorrhage during wait period for second surgery months later and during the surgery and again more bleeding. Hurt, hurt and hurt.

But what do we do..

.. We go on.

Overcoming the Stress Response

Posted by twinklev

The Sympathetic Nervous System is derived of 2 components. The Sympathetic Nervous System (SNS) and the Para-Sympathetic Nervous System (PSNS) both of which makes up the Autonomic Nervous System. The Sympathetic Nervous System is also known as Fight, Flight or Freeze. Stress and the Brain can be a serious issue for many individuals. Related or unrelated to various diagnosis’. Over the years I have lisened to thousands of individuals with a multitude of diagnoses.

Most of which touch on the the Stress Response. The stress response is “The Sympathetic Nervous System”. The Sympathetic Nervous System is the Stress Response. It is Fight, Flight or Freeze.

Having Complex Regional Pain Syndrome Type 2/Causalgia, I’ve had to take pause for an extra peek. Was there something there in my life at the time to cause my body to take this abnormal path. Has the stress and idea of not being able to heal kept me in this abnormal pattern. For me and only me, I cannot dismiss it. I cannot seem to find anything solid, but our minds don’t always work that way conclusively.

I refuse to give up, yet I fall to my own victimization in that I, at times, give up. It doesn’t matter if it is for 5 minutes or for a day. I have the awareness to know that by giving in, am I somehow reconditioning that stress response. I think it is possible. I use many of the alternative techniques available to me on a regular basis. That is how I survive. I also know that I succumb to fears of the future. Fear is anxiety. Anxiety is fear. Fear and anxiety is stress. Add stress to chronic pain and you, or I, will always have a vicious cycle to endure.

Rarely do I focus on the physical decline of my being, I am aware. If I did, I would continue to re trigger the same event each and every day. I don’t focus on the look, or what I see. I do have trouble with the fact I can’t get out on my own. I have been trying to clear the secondary issue of depression. Many of us believe we are reasonably well. That is what we represent. My family fell to a hard decline a few years ago and since then it has been non stop. Surreal in some ways. A living dream. My personality type is to fix. My family is everything. My husband, children, and my grandchild.

If I can’t fix it, love it, make it right then it is wrong to me.

I have been taught not to show pain behaviors and not to guard. This is almost nature to me. For years now. Seldom if at all.

Perhaps there are times, yet they would be minimal.

I am on my way to getting better! You won’t be able to until you get rid of everything heavy you ever carried. Why? Because chronic pain has a way of bringing it all back. Heavier than it ever was. You will keep everything inside you. All thoughts, misconceptions, hurts, perceived hurts. You will! You have to let it go. And once you do, you will find peace not only in yourself, but in your pain.

~Twinkle VanFleet

Overview of the Autonomic Nervous System

http://www.merckmanuals.com/home/brain_spinal_cord_and_nerve_disorders/autonomic_nervous_system_disorders/overview_of_the_autonomic_nervous_system.html

The sympathetic division of the autonomic nervous system maintains internal organ homeostasis and initiates the stress response.

https://www.boundless.com/physiology/textbooks/boundless-anatomy-and-physiology-textbook/autonomic-nervous-system-ans-14/physiology-of-ans-142/sympathetic-responses-750-9204/

Fight, Flight or Freeze: The Stress Response

http://psychcentral.com/blog/archives/2014/07/31/fight-flight-or-freeze-the-stress-response/

What is the Stress Response?

What is the Stress Response

Stress Management

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Chronic Stress Puts Your Health At Risk

http://www.mayoclinic.org/healthy-living/stress-management/in-depth/stress/art-20046037

Post Traumatic Stress Disorder (PTSD)

http://www.nimh.nih.gov/health/publications/post-traumatic-stress-disorder-ptsd/index.shtml

Systemic Complications of Complex Regional Pain Syndrome

Click to access Systemic-Complications-of-CRPS.pdf

‘Placebo therapy’ ineffective for long-term chronic pain relief

Posted by twinklev

December 11, 2014

Dr Andreas Goebel, from the University’s Institute of Translational Medicine, explains: We found that patients experienced significant pain relief minutes after a placebo therapy, such as salt water injections, but unexpectedly at a later time, and even with repeated placebo applications, there was minimal or no impact on reducing the symptoms of the condition.”

The results suggest that CRPS will not improve naturally over time, and there is little fluctuation in the pain intensity of the condition.

Treating Pain That Won’t Go Away – Ithaca Times : Family And Health

Posted by twinklev

Posted: Thursday, December 4, 2014 12:03 pm

By Bill Chaisson

“There are two types of CRPS. Type 1, which accounts for 90 percent of documented cases, according to the Mayo Clinic, is marked by nerve pain when no nerve damage was involved in the initial injury. Type 2 is a more explicable development of regional pain after damage to the nerves.”

Spinal Modulation Completes Enrollment of Its Landmark U.S. Pivotal Trial Evaluating the Axium Neurostimulator System for Chronic Pain | Business Wire

Posted by twinklev

The ACCURATE study enrolled 152 patients at 22 centers throughout the United States. This represents the largest neuromodulation study to be conducted in patients suffering from nerve injuries (peripheral causalgia) or complex regional pain syndrome (CRPS, also known as RSD) to date.

“Approximately 10-50% of patients who undergo common procedures like hernia repair, knee surgery, and other lower limb surgeries will suffer from chronic pain resulting from nerve injury2. These conditions have historically been difficult to treat with currently available technology,” said Dr. Timothy Deer, co-study lead and CEO and President of the Center for Pain Relief in Charleston, West Virginia. “The ACCURATE trial is a landmark study that could change the way we treat these chronic pain conditions. Results from prior European studies have been promising, and we are hopeful that the ACCURATE trial will continue to substantiate the effectiveness of this therapy for our patients.”

Cause of Complex Regional Pain Syndrome Further Examined

Posted by twinklev

Cause of Complex Regional Pain Syndrome Further Examined.

“The researchers reported recent discoveries indicated there is an “autoimmune contribution,” to the condition, which often occurs after a small accident or surgery and causes pain that persists for several years.”

By Jacquelyn Gray | August 05, 2014

Click above for full article

(Pressed Post)

—

I shared a similar article a bit ago to my Facebook and related pages. This one is 2 days old. It is a reminder that there is hope! ~T

3 Girls with RSD/CRPS

Posted by twinklev

Megan 15, Tori 15, and Gracie 11.

Help These Girls Get the RSD/CRPS Treatment they need!

Megan Manuel (15)

http://www.gofundme.com/2f7l8g
Megan needs a Spinal Cord Stimulator

Tori Quinton (15)

http://www.gofundme.com/Help-Tori-get-better
Tori needs Calmare Therapy

Gracie (11)

http://www.gofundme.com/8wjinw
Gracie need to get to Dallas for CRPS Treatment

2 of the girls are 15 years old with RSD, one is only 11 with RSD.
Please consider helping them reach their fundraising goals or by sharing their pages so that they might have an extra opportunity for better exposure. The girls will be featured by the Power of Pain Foundation’s Patient Fundraiser Program August 2014.

As a CRPS/RSD patient myself, I would like to help their pages get noticed too, get the care they need, even if in this small way, so that they might have a better quality of life moving into their adult and teen years. They are each at a precious ages with school functions to look forward to, dances, activities to enjoy. Without pain relief this will not be as possible as most take for granted. As adults it is hard enough, most of us have gone through life lessons to teach us strategies for survival. Adults can barely manage. I believe young ones have it much harder. They need life experiences, good memories to build on.

Their adult world comes soon enough.

Each parent will choose their child’s options, they may even decide on something else along the way…

Any recognition for Megan, Tori and Gracie is much appreciated.

Thank you!

Real Love and Good Sex: for Chronic Pain Patients and Their Partners by Ms Barby Allyn Ingle and Mr Ken Ray Taylor

Posted by twinklev

Real Love and Good Sex: for Pain Patients and Their Partners by Ms Barby Allyn Ingle (Author), Mr Ken Ray Taylor (Author)

http://www.amazon.com/Real-Love-Good-Sex-Patients/dp/0615961010/ref=sr_1_1?ie=UTF8&qid=1403059408&sr=8-1&keywords=real+love+and+good+sex

I was honored to write the forward to this book.

Please keep in mind that the Ms Barby has Reflex Sympathetic Dystrophy and the tips she gives is her own, she’s not a sexual professional or expert. But a professional in her own life and sexuality living with a chronic, incurable, neuro autoimmune disease which affects the Central Nervous System, the Limbic System, Autonomic Nervous System, and most of all the Sympathetic Nervous System (also known as Fight or Flight) and multiple other bodily functions. The Autonomic Nervous System consists of both the Sympathetic and the Para Sympathetic. Depression is often a secondary diagnosis to RSD/CRPS, however that is not an issue here.

Barby and Ken attempt to help the reader or partner dealing with pain understand that the sexual component in a relationship is still possible. Perhaps not each and ever moment of the day, but that it is possible. Sex induces endorphin’s which in turn reduces chronic pain.

I am in my 14th year with this same disease.

All things are possible. You won’t know if you don’t try.

Fight for Tomorrow

Posted by twinklev

Always have faith that a better tomorrow will come. We have to or we won’t survive. The life of chronic pain becomes a family disease. In the last few months we have lost over a dozen people in the CRPS/RSD community. At least half to suicide. Most people do not premeditate their suicide. Many do experience suicidal ideations. It has been noted by professionals that “wanting to die or commit suicide” and suicidal ideations are not the same”. If they were more of us would be evaluated and helped before we get to the point of knowing our pain is never going to managed and into the sudden taking of our own lives. When it happens it is often spontaneous. There will have been signals and signs misread. There is always a cause and there will always be an affect. So many are not afforded proper medical care to reduce pain levels. Opioid medications, such as Hydrocodone, continue to be well versed as a gate way drug to harder and heavier medications such as Oxycodone. It has been said a like a broken record over the past decades that Marijuana and narcotic use causes a person to become high risk for Heroin use. I do not believe this to be true. I do believe it’s possible in some personalities. Addictive personalities perhaps, but this does not include our entire population. I am offended for honest chronic pain patients that need pain care who have been dismissed as drug seekers. I am offended by good providers whose practices have been raided for prescribing Opioid medications.

It’s not the Opioid itself that is the epidemic in our society, it is the person who does not take it exactly as prescribed which can lead to abuse and misuse. Re evaluate the patient for possible addiction or consider another pain management plan of action. Either way they need help!

If pain patients aren’t taken care of and the pain cannot be controlled..

The number of deaths continue to rise. The epidemic will be chronic pain related suicides.

Your autopsy report will probably read.. as a result of depression, misus, abuse or other. There will be nothing about really happened. There will be nothing about the fact you couldn’t get pain relief and your last, very last resort was taking your own life.

DEA.. You don’t know pain until you’ve contemplated.

Speak up and speak out!

Let there always be a tomorrow. Fight for your tomorrow!

Drowning In Fear

Posted by twinklev

My day time stop breathing episodes have been worsening. It’s still and silent! Where ever I am in the breath at the time is where it all stops. If I had just inhaled I have a few seconds as if I’m under water, I’m not panicking yet. If I had just exhaled there’s little time left. I don’t gasp for air, my body doesn’t startle or flex, everything ceases. At some point in my mind I am aware that I’m not breathing this is when the panic sets in, I tell myself breathe, but I’m not breathing yet, breathe! I can’t even hear my heart beating.

And then I come back! My chest is thumping loudly, my head is pounding, my body is shaking, but I’m back.

I thought these were panic attacks in the past until I realized if they were I should probably be attempting to get air, take it into my lungs. My body and mind doesn’t react this way, though. I have a Pulmonary Specialist that I see for Central Sleep Apnea and Narcolepsy. I do know that I stop breathing numerous times a night for up to 2 minutes. I use an Auto Servo Ventilator for that.

When I was a child I nearly drowned trying to save my sister who was drowning. Her instinct was to save herself so I went under longer. I know what it feels like to not have that air and having it occur more and more often is frightening.

I’ve been lucky through out my life to not experience many headaches. Just average really with the flu, cold or just a random one. The headaches I’ve been having have been terrible. My chest, my jaw, face, arms. All of me, I suppose. Beyond what I consider my normal CRPS. My blood pressure has been on the rise. I’ve been on Lisinopril for it for over 2 years, but it’s still high in the 150’s and 160/’s.

One minute you’re doing something, even resting and the next your gone! The clock is still ticking, but time has stopped for you. You can’t make it move.

No one else can make it move either…

That’s fear!