EDS, Hollow Organs and Hydration Concerns

Written by: Amanda Henderson 08-25-2023

Spoiler Alert: this blog contains references to some real sh*tty circumstances.. reader discretion is advised. ;) Also, I'm not a medical professional- this blog is intended to provide experience and information in hopes of helping others. It is not medical advice.

EDS is a lack of/ damaged collagen, the glue that holds so much of the body together. For many who have EDS, it makes hollow organs vulnerable to stretching, flopping shut, and kinking, and in the vascular type of EDS, rupture. This causes many problems that need to be addressed and conventional methods aren't always the best answer for patients with collagen issues.

There are many common GI comorbidites within the EDS community. From the mouth to the anus and everywhere in between can have multiple issues that are enough to keep a patient from being chronically uncomfortable to painfully, and sometimes embarrassingly, homebound. This video is very informative for explaining EDS GI issues. These are a few of the myriad of issues brought on by faulty collagen, but not an exhaustive list..

•GERD - weak hiatal sphincters and MCAD can contribute here – the stomach produces acid in response to histamine from food reactions

•EOE - multiple biopsies throughout esophagus are needed with special stains for immunology. This is especially important when the patient has and/or is being treated for MCAD. Mast Cells/Eosiniphils release tryptase, cytokines, prostiglandins that damage the nerves over time making GI motility dysfunctional.

•Gastroparesis and Colonic dysmotility beyond just constipation and IBS, possibly from impinged nerves & vessels - difficult to test- prefer smart pill study to gastric emptying study - sitz marker study for colon

•Pelvic Floor Dysfunction

•Irritable Bowel Syndrome (IBS) & proclivity toward constipation, but with quick flips to diarrhea (likely food allergies/MCAD)

•Compression syndromes, including: Median Arcuate Ligament Syndrome (MALS), Nutcracker Syndrome (NCS), Superior Mesenteric Artery Syndrome (SMAS), and May Thurner (MT)

•Splenic Flexure Syndrome

•Hiatal Hernia (stomach to esophagus sphincter) and all other forms of hernias just about anywhere (inguinal, duodenal, abdominal, etc.)

•Diastasis recti (splitting of abdominal wall along the midline)

•Esophageal spasms

•Diverticulitis and diverticulosis

•Trouble swallowing & choking issues, often neuropathic in origin from CCI, sometimes due to floppy laryngial tissues

•Crohn’s and colitis

•Leaky gut syndrome

•Celiac disease and all forms of gluten sensitivity

•Uterine or rectal prolapse (rectocele), pelvic floor dysfunction

•Incontinence at any age (often from occult tethered cord and/or MCAD or allergy induced)

•“No burp syndrome“, aka C-RPD in which people cannot burp at all or ever, not just sometimes

•Intussusception (folding over/overlapping) of the GI tract at any age

•Stretching of the intestines over time due to partial blockages and collagen issues

•ACNES

•Gut-Brain signal sluggish, interrupted

•Hypovolemia and POTS can keep the blood flow from performing properly for digestion

•Dumping syndromes, Early and/or Late

•Postprandial hypoglycemia (reactive)

The venous system is another hollow organ that can have profound issues in people with EDS. Small, floppy veins most likely contributed to my stroke per the neurologist. Keeping the venous system clear and wide open are of importance, as well. Also, the cardiovascular, urinary, and lymphatic systems all help the body control water balance. The cardiovascular and lymphatic systems transport fluids throughout the body and help sense both solute and water levels and regulate pressure. Imagine what happens when these systems are not able to regulate properly- and there are so many physical and neurological issues that can keep these systems in a state of dysregulation, I could probably write a whole other blog about them.

Because of the myriad of issues that patients with EDS face, their physical and neurological burden can be such that they cannot utilize hydration through the GI system any longer, and acquiring it through the venous system is a much better option. We could drink water all day long and it will 1) flush needed nutrients and 2) run right out the body without absorbing correctly. Adding salt and electrolytes to water is helpful, but still not always the best hydration technique. When you're keeping dysautonomia and MCAS at bay as much as possible, but you still have too many symptoms to be able to thrive, you may require IV therapy. Getting the body to rest and heal when it is appropriately hydrated can go a long way in keeping many of the symptoms we live with on a daily basis in a better balance.

I've had issues with constipation and colic since birth and self eliminated foods from my diet since I was a small child. It's no wonder I have physical and neurological components that contribute to GI system involvement with hEDS. I often end up with partial blockages in my GI system due to stretches and kinks as well as nerve signals not working properly that keep from moving the muscles properly. I then have lots of overflow, discomfort, and incontinence as well as more fatigue, which makes eating normally or using the usual remedies not very helpful. Any medicine that requires liquid to be pulled from other places in the body can contribute to the whole problem. I already don’t have enough fluids in my body to begin with. I believe my colon is also a major contributor to these issues- it is delayed and backs up easily, then inflammation sets in and everything below my belly button is annoyed and hurting. "Sick Day Diets", smaller, softer meals that move through you easier - or Low-Histamine diet for help with MCAS (this, along with oral cromolyn sodium, famotidine, and loratadine are extremely helpful for the GI system that has histamine and MCAS difficulties). Saline IV is the best remedy that I have found to help move partial blockages in my small bowel due to these hEDS issues and the dysautonomic symptoms I encounter on an ever-changing daily basis, as well as the neuro-muscular problems that keep fluids from flowing through my body properly.

For me, receiving 3-4 saline IVs (lactated ringers did not work for me) per week has helped to regulate nausea, constipation/ diarrhea from possible partial blockages, incontinence (urinary and bowel), heart rate, stomach pain and food digestion issues, nutrient absorption, energy, sleep disturbance and fatigue, physical limitations due to muscular weakness and pain, brain fog, bladder and UTIs, female system issues, to name several things. They are collectively caused by dysautonomic, Mast Cell Activation Disease, and neurological and muscular/fascia issues. The exact causes have been difficult to determine and specific testing remains inconclusive on many fronts, but treatments and therapies have been helpful. Being able to leave the house to visit others or run an errand from time to time has been very uplifting. Also, IVs have given me enough ‘spoons’ back that I was able to enroll in Physical Therapy again, which has helped my neck issues enough that I won't require surgery in the near future. I never dreamed how much this treatment could help me, and I'm so glad I figured it out.

There are hydration walk-in clinics that don't use insurance and you simply pay for in the moment. They average around $100 per session, depending on your choice of hydration cocktail. Many patients find some benefit to this, but cannot afford to go often enough to provide adequate care or can't afford to go at all.

Having a doctor who is willing to order saline or lactated ringers IVs is the first step to receiving this care that will be covered, in some way, by health insurance. You also will need to research how you want to access your veins, what kinds of facilities it is best covered in, and how often you need to go in.

There are several options for vein access. Thoroughly research each option for the best outcome for your needs. A vascular specialist can help you determine which type of venous access device you will need, if you require further help than your doctor can provide. There are Peripheral Venous Catheters (PVC), Central Venous Catheters (CVC), Peripherally Inserted Central Catheters (PICCs), and Implanted Ports. Once these steps are complete, you'll need to find the best way to receive the hydration IVs.

Hospital outpatient centers have the broadest insurance coverage, especially if you have Medicare (Medicare covers hospital visits but not self care for hydration, and they do not cover IV fluids that are not run through DME- durable medical equipment, such as an IV pump), but some doctor offices have an infusion center facility in it that will only charge a copay to visit, like a specialist doctor office visit. Another option is a home care nurse who can access your port and leave it in for one week while you administer your own fluids once or several times per week, or the number of times you require it. They return when the week is up and deaccess the port and place a new needle, starting the process over again. Some insurances do not cover this benefit if you aren't homebound, though. Check with your insurance providers to see which will be the best option for you. You may even find more options in your area, as they can vary from state to state.

The best option for me, for optimal medical insurance coverage, is to visit a hospital outpatient center for treatments until I reach my deductible (the doctor office infusion center does not apply towards my deductible) and then a local home care pharmacy is covered for sending the supplies right to my home. I can then access my port and run the gravity fed IVs myself. I was trained in the sterile technique by a nurse, so I am capable of doing this. It took a while to figure out the best course of action for me because of the limitations of what different insurances cover. With patience and determination I've fought to get to this point, and hope better options may occur in the future. The outpatient hospital programs aren't the most ideal option, but they get me through until I can receive plenty of fluids at home again.

Administering these saline IVs in my own home has made it possible for me to have more freedom and utilizes less of my energy spoons so I can reallocate them as I'd like. It takes more energy and resources to go to the hospital than to be able to stay at home for several hours many times per week. I also have to find a ride or drive myself, which I usually don’t do- it’s difficult to find so many rides in a week, though. Being tethered to home because you need medicine inside a facility that has used up your energy spoons makes life beyond those treatments very difficult (I did that for FIVE years, but with fewer treatments).

Rate of IV flow is also a big consideration. When mast cells are already triggered, shocking the body with fluids can cause further degranulation. Reducing the rate that the saline is normally run at ensures that an already compromised body is not overloaded, causing headaches, general malaise and more fatigue. Inflammation can tip the scales of an already poorly working system. Spending 4 hours in a hospital or clinic setting per IV is a lot of work for a chronically ill patient. Also, many clinics prefer 1-2 hour IV sessions and aren’t set up for 4 hour sessions more than once per week per patient. You will need to discuss with your doctor the frequency, duration, types of fluids, as well as where to have it done for the standing IV fluid orders they will write and submit for you.

While there are so many things to consider in approaching the need for hydration therapy, finding the right combination for receiving this care can be life changing. I hope these insights can be of help to anyone who is looking for more information about this. Be sure and talk to your doctor about these options, and hopefully you'll be well on your way to helping your body work in a much better way.