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Living with medical conditions means patients inevitably must confront life on an emotional roller coaster brought on by the fluctuations in their medical conditions.

I have written about success back, after two years, of waking up with my gut shut down. I did find a successful treatment. The success suddenly happened when I ended up with a cold and due to my inability to metabolize medication for congestion, I had turned to alfalfa tablets that a homeopathic doctor mentioned might work. So, I started to take alfalfa to dry up that congestion and to my surprise, the gut moved for the first time the next AM. This successful method lasted for a few years, even after second neck surgery. And now??……

Ellen Lenox Smith

Living with Ehlers-Danlos syndrome creates a life you live that is often unpredictable: a simple hug, turn the wrong way, step on something uneven, each can cause the body to shift out of alignment. One mild virus can also cause havoc in your system. Having dealt with a stomach virus that caused three bouts of vomiting, chaos began. The gut decided it was not happy and after all that work for so many years, it shut back down.

So, I am back to trying not to give up hope in order to attempt to make the best of daily home enemas and weekly colonics until my gut is rejuvenated. And then you have to add the emotion of being pushed backward. I have had to talk with myself to keep the emotions in check. I have simply realized that I know the old routine I have had to go through for two years and I understand how to make the best of it. Do I enjoy it? Not at all, but I need to live. We even traveled to advocate for the Rare Disease Conference and were able to have me do what was needed in our hotel room.

What bothers me the most:

  • Going back to the older version of me.
  • Losing AM time normally used for reading the paper and exercising. The home treatment takes time—and I never know exactly how long each session will take.
  • And I tend to feel self-conscious about having to do the enema at home with my husband around too. He has never made me feel this way but still I do.

What I focus on:

  • If I could turn the gut around after two years of no action, then why not succeed again?
  • If this is the worst that could happen and I need to continue to return to living my life from now on with a nonfunctioning gut is: at least I am ok, alive and still doing things as before, despite this needed treatment.
  • I need to clean the gut out so if not naturally, this is the best second to keep living life comfortably.

So, how about you, have you, too, experienced successfully rising to the top of the hill of progress and then fallen back down, too? It is one of the tougher things to cope with but we don’t always get a choice as to what our challenges will be. However, we do get to choose how we handle these issues and I am trying to choose to be positive and still find satisfaction in my daily life.

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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Authored by: Ellen Lenox Smith

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Ellen Lenox Smith

For those asking about Alfalfa, I take 6-8 tablets (1,000 mg each)in the AM and again in the PM, melted in warm water since swallowing is a challenge at times. I have tried increasing another noon dose. You have to play with the dosing and find your match.

Jeffrey Sampson

I suffer from so many different problems and diseases it’s crazy yet to just get another telephone call from my rheumatologist office this morning just to be told I have a tumor in each foot that has attached to the plantar faciastis nerve forgive me if I have misspelled anything. I am also dying from an uncurable lung disease and my pain levels are so high it’s beyond measure anymore. I hate when a doctor asks me on the 1-10 scale for a rating makes me want smack the Sam he’ll outta them then ask did that hurt lol just to hear I won’t raise your pain mess in case you are in an accident or something and need surgery or something they may not be able to get you under wth even though I have made myself very clear if anything happens to me at alleast just let nature take its course NO MORE SURGERIES period. Why on earth would I ever agree to more surgeries the inevitable is in front of me and I don’t have any fear of any kind whatsoever of death my very strong belief in God is in tact and if I am wrong at time of death then millions and millions of people are either way death cannot be avoided by anyone and I am so so tired of the pain the suffering I am just done. I had a bowel movement for the first time in a month two days ago so I do understand the gut not working! I am on high doses of steroids because doctors have caused me to get Addisons disease because I either take steroid shots for many years for help with pain or no pain meds at all yet they never told me ever not once about Addisons never even heard of it until it almost killed me several times over a three year period, how nice huh?
Here is my point everyone find happiness within your own life and self take that and run its what I have done myself thankfully God has provided me with love and happiness it does exist within us if we just accept it.
May God Bless you and your family always!

Cheryl M Scoledge

Yes – it’s a rollercoaster, isn’t it? Back in 2016, the pain was so great, I couldn’t stand long enough to empty the dishwasher. I (finally) after years, found and cut out all of my food sensitivities, and by 2018 was walking 3 miles a day!

I’ve relapsed. I can barely pick up a dinner plate, or lift a coffee mug to my mouth. I previously didn’t realize musculosketal pain was part of MCAS/ histamine intolerance.

It’s possible in my quest to eat better, I’ve actually done a disservice. I was recently told I had dry eye, and was told to increase the amount of fish oil I consume to combat the condition. I increased my already high intake of canned tuna and sardines. Tuna and sardines are high in histamine. I cut them back out 3 days ago, and already have more energy and less pain.

I find it interesting the information that we “know”, but we don’t have that ah-ha moment until we read the journey of others. I “knew” that we don’t metabolize medicines readily – but had an “ah-ha” moment when reading your story – I’m sure the same thing happened to me last Jan – Feb. I was on meds for 2 months and was only getting worse. Thank you for your story. And for mentioning alfalfa – I didn’t realize it was used for congestion – chest congestion or sinus – or both? I previously used Fenugreek for sinus congestion.

Yes after being abused by the medical community I was able to trust a doctor recently. I saw one to see if a dorsal root ganglion implant would help some of my pain. I was diagnosed with complex regional pain syndrome type two by this doc. I have several other conditions too. After waiting months I did everything he wanted me to do including getting clearance by a psycologist.I had trial wires implanted which I had for four days. My pain right front abdomen was improved 85%, left front upper abdomen improved 60%, left back improved 75% and worst pain in lower left abdomen was 0% because it was not stimulated, they missed it or wires in wrong place. When wires were removed I figured they would set up the permanent surgery but surgeons wife said she did not know if she could reccommend it. I became upset and she hurried out the door telling office staff to contact her husband to see if he would put a permanet implant in with possible trial wire to the missed area. Next day I had an insurance manager call them in a three way conversation to see what the time frame was going to be with the permanent implant. They told her numerous times that they were going to give me the implant. Next day had me go out to talk about pain treatment while I waited for the implant because my appt . with the doc was going to be two months to talk about the extra wire. When the P.A. came in she seemed mad and said” So you came out today to talk to us about pain management until you get the implant?” I said “Yes”. She said ” You are not getting the implant and told me cruelly that I failed the test because I did not have pain relief in my worst area. Many times I told her that it was not stimulated and that I had pain relief everywhere else. She said she talked to the docs and they will not do it and to insurance company and they will not pay for another trial. Gave me 5/325 MG hydrcodone 2 x day. I am going to appeal. Feel really stressed. Rep is trying to help. Feel so down.

Mike Crail

Hello, I’m not exactly sure of how your disease works but I have a few words on your stomach shutting down. I have a problem with my system shutting down for over 30 years. After all the Doctors I was told I have a food allergy and they didn’t know From what.

IT started off with a 30 dash to the bathroom, then nothing for a few days, constipation and then having sharp pains that almost knocked me out. They would hit anytime and anywhere. What I found out was my colon mussels clamped down stopping my system. Then my system backing up would allow gas to blow a whole in my colon. This is what causes Polyps in your colon. It got so bad that the fifth day I would get so tired I just wanted to sleep.
Just Like a broken record my system went through this over and over. It caused pain and the 30 second run to the bathroom. In the beginning, then locking down the Colon mussels that caused the five days of misery.

You wouldn’t believe what I found the problem was. It took me years to isolate the problem. I cut out all foods and just ate a baloney sandwich with a glass of water. I did it all day. Then I added something every day, a few weeks past and still feeling good until I ate cereal and had a few glasses of milk. I thought it was the end of the world, I loved milk.

Well it goes even further. I quit drinking milk all together thinking I found the problem of blowing my gut all out of wack. I started eating everything except what I found. I started having the same problem just not as frequent. I kept working on it by doing my own cooking so I could control what goes in.

I found this additive it overloads the bodies system of enzymes used to break It down so it could digest it. This product is whey. Yes The by product of making cheese. So they put it in foods to make them creamer. It’s like concentrated milk. Half the nation. IBS with constipation. Cut down on dairy, use align and Prilosec for ten years with great success. Mike Crail. Mcrail3@gmail.com

Jeanette French

Yes, I had come to terms with one illness which put limitations on my life, only to then be hit by another one that has devastated my life. Trying to come to terms with this one has been very difficult as it is not yet diagnosed and doesn’t seem to ever be. It is very hard to never see whom you used to be and for others to judge you on just who you are now. Did you know I used to be a workaholic and worked several jobs t tome time, all you can see is my non functional self now and I see the judgement in your eyes and is it so very unfair. I never planned to become disabled in the middle of my life, and suffer with it for the rest. And what so many people just do not understand is, it can happen in the blink of an eye to them. One minute you are perfectly fine, the next, injured/sick and forever in pain.

WILSON HULLEY

I LIVE WITH PAIN 24/7 IN A 8 TO 10 PAIN LEVEL. WE REALLY HAVE NO RSD/CRPS MD’S IN THE GREAT WASHINGTON, DC AREA. WE MUST DRIVE 70 TO 90 MILES FOR ANY TREATMENT.

Greatly admire your practical positivity. Not only is it inspirational to read, I learn so much from you. Thank you…And to all of you who may well be worried about the Corona Virus epidemic. As chronic pain survivors, we willall be well practised at confronting yet another potential health crisis. Whereas many may not be so fortunate, if that’s the right word,..

Sarah

I also have Ehlers-Danlos and these gut issues are almost as big of a daily issue as the joint pain! I have been admitted to the hospital literally FOS (Full Of Sh*&- that’s what the doc called it!) – I can eat @ 5 bites per meal or I vomit – there is just no room! In the past I found using pancreatic enzymes worked very well at pushing things through though the lowest dose was …too strong I guess would be the best way to put it – taken with a meal I would be starving an hour later. I know that one of my medications causes slowing down of gut motility and have asked my primary (who is treating the Ehlers-Danlos as no specialists in the area) to switch to another that doesn’t slow things down further but because it’s a pain medicine she’s reluctant to change it – for political reasons – even though if politics were not involved it would be the medically appropriate thing to do. I just started using grapefruit seed extract and though things haven’t sped back up it’s not as uncomfortable gut wise and it works better as an anti-inflammatory for me than NSAIDS. I am diving into research about supplements and natural remedies – I hope to one day be in control of my body’s care – not a slave to the medical establishment and what politicians think is best for me. I have noticed that with Ehlers-Danlos that the more natural something is (foods, vitamins, meds) the easier our bodies can utilize it – fortunately I love cooking from scratch and try to whenever I can – on bad days dinner is a salad or a plate of grapes and yogurt – once I realized this and changed my diet accordingly things have slightly improved gut wise and it gives me hope that with more research that I will find more ways to improve my situation. Please post an article here or PNN if you have found any that work well – there are many more of us dealing with this condition than most would think and when we share something that works with others that are affected I think we are also sharing hope.

Theresa L. Negrete

Hi Ellen, One success I’ve gotten, that you reminded me of, is that after having to turn to cannabis, my gut and bowels are acting better. Who knew that would help with these problems I’ve had for decades. Being cleared out makes a huge difference in being able to move better, with a little less pain. Thank you for all you share with us! 💖

Connie

Hi Ellen. My entire digestive system pretty much stopped working and I couldn’t digest much of anything for years. In searching for pain control for other issues I found a miracle in RSO! I can’t swear it would help you but it worked great for me!! I used it for about 6 months several times a day and now only need to use it for a couple weeks when my system decides to stop functioning right! I was taking up to 10 laxatives a day and often needed both enemas and glycerin suppositories, now 2 or 3 laxatives a day keeps everything running pretty smoothly! I was losing 5+pounds per week and throwing up a lot, no more constant nausea and gained the 50 pounds I desperately needed!! Wishing you the best!
Peace Connie

Cindy too

Ellen, so sorry about your new problems. I’ve suffered from severe constipation my entire life, and it’s worse due to opioids, and due to my crappy diet thanks to my chronic pain — I no longer cook healthy meals with lot of veggies.

You mentioned alfalfa to get things moving. Can you be more specific? Many thanks.

Martha

Hi Ellen…and yes, most of us here deal with pain & the deterioration of our bodies, our lives as we once knew it, as well as the setbacks, progress or lack thereof. We deal with both physical & emotional trials, but sometimes we are able to rise above all adversity to appreciate the simple joys of life, maybe a spectacular sunset, a Hummingbird drinking at your station and someone’s random act of kindness! We all have set backs and trials every single day. So, it is absolutely OK if ‘we’ have a bad day, a sad day or decide to simply grieve for our “former, mighty selves.” The reason, in my humble opinion, that we all gather here – is to understand and encourage each of us not to give in nor to give up. I acknowledge your pain and sadness & my heart breaks for yours many days. We are here for you! I am able to type on my phone today (for a little while) & for that I am grateful. Many days I can not when my cervical vertebra slip out of alignment. So, in this long-winded way, I want to encourage all of us that it is:
1) OK to feel whatever you’re feeling – but 2) try to set a limit on the amount of time given to sad or negative thoughts
I allow myself 5 or 10 minutes to have a solo, pitiful ‘pity party.’ I miss my former life so much – my horse, snorkeling, my art, my clients, being able to hold a book like most people do, etc., etc. But then, that’s it, times up! After 5 or so minutes I turn on music that makes me happy & decide to live in that space instead.
You are loved Ellen & I hope you will join my dance party…if only in our minds and as soon as you are able to. Hugs

Carolyn Robinson

Hi Ellen,

I totally understand what you’re saying. I had a very successful spinal fusion surgery a year ago…my 5th surgery for scoliosis and pain…and this one made my life amazing!

Then, in September, I was diagnosed with
Rheumatoid Arthritis. Now because I work from home I have back pain (but nothing as severe as before surgery) and all my joints burn, tingle, and ache. The only thing that keeps me going is 1) God never gives us more than we can bare and 2) I love my job!

If I was not working depression would hit me like a ton of bricks. I do get depressed but it’s easier to bounce back now then it was several years ago!

Thank you for sharing your symptoms!

Laurie

Dear Anne,
I am sorry to hear of your setback. I didn’t realize ED did that to the digestive system!
Back when I was young and learning about how my body works and how to stay healthy, I was very interested in nutrition and how the body works.
My best doctors who actually listen to me sometimes often ask me if I have medical training. the other ones just get threatened, I find. :::sigh::: people are what we are, I guess, esp when lacking self-reflection. Oh well…
I know you have to get your bowel as clean as you can. After all aw they say in the health community “death begins in the colon”.
But, have you considered your intestinal flora situation?
I find if that gets out of whack, I have all sots of problems and enemas and colonics really do a number on the beneficial bacteria in our guts; like wipe them out!
If you can eat anything, try to ingest good, plain yogurt. It is very soothing on your stomach and intestines in the first place. I put it in berry smoothies and it’s yummy! Berries are also very good precursors to the bacteria.
Once we take antibiotics or other medications too, they can wreak havoc with these bacteria.
People don’t realize this and doctors sure don’t. In fact, they’ll poo-poo it.
Do some research of your own, I think and hope it will help you at least feel more comfortable.
Also, let yourself feel a little and maybe NOT be so positive all the time. They’re now finding out that may not be so good for us if it doesn’t reflect our actual situations.
And do what you need to do for yourself without shame of worry about anybody else. That doesn’t help anybody and we don’t need to take on imaginary problems
Love to you, honey

Bram Judy Cast

I suffer from pancreatitis chronically, and gastroparesis. Do you think alfalfa would move my gut? What milligrams did you take?
Thank you!
Bram.

becky

You keep fighting the good fight, Ellen! Those darn bowels with Ehlers Danlos! Had that here for my daughter, oh very scary as it is quite serious, can mean life or death if get impacted and punctured etc. I had take my daughter to ER and yes an emergency and yes she didnt let me take her till few days and extreme pain at home to try sit. For her, going to ER makes for huge nightmare of pain and suffering on top , since they won’t give pain meds due to state of affairs.
It is a major effort on top of chronic pain, and to disrupt the morning routine yo try to keep going, mentally and physically makes one have to really dig down emotionally and of course physically to do this. I see my daughter so yes understand how this compounds the entire EDS struggle. For those that dont kkow those exercises hurt like H E double golf sticks but are a must to try keep joints together and from experiencing even worse pain as the bones and joints subluxated or worse dislocate. Prayer sent up all turns back on Ellen. Cholestyramine is used by my mom to help with colon elasticity, thx for alfalfa tip!