Updated: Feb 18, 2019
Okay, okay… About those GI issues. We have an answer. Unfortunately we have too many answers. 6 to be exact. Yes, 6. There are 6 things contributing to my GI malfunction.
Right now i’m thinking back to all those months last fall when I fully convinced myself that there wasn’t anything wrong, I was just being a hypochondriac and I needed to suck it up. I couldn’t eat but yet I was positive I was over exaggerating. I mean, I knew deep down there was something wrong but i’m unsure if it was denial or just the fact that my mind didn't have space to deal with GI issues on top of everything else. I’m choosing to believe the latter.
While I believe I do a damn good job managing it all, sometimes I just cant deal with issue “x” at that exact moment. I think that’s a natural thing we do as humans. Like that eye doctor appointment Keith has been on my ass about for 13 months. Yeah, that isn’t happening right now buddy. I only have so much space in my brain to keep it organized and together. Just like we can’t have it all, sometimes we just can't deal with it all so we graze over certain parts. I’m a pro at that. Life is hard. Emotions are hard. Sometimes we just can’t do hard. And that’s okay. We do our best we can at that moment. And that’s okay too. (SIDE NOTE : If you are struggling with the feeling of not giving something your all, don’t be so hard on yourself. It isn’t worth your agony. I look back at some of my #everydaymay posts and see some that I know I could have given more to. But then I stop and think, on that day I probably gave all the effort and energy I could and i’m happy in that. I mean, I did it. I put in the work. Remember that.)
Finally gonna talk about those GI issues now. Notice i’ve been stalling? Ha!
I’m going to briefly explain each separately but know the whole body is just one big loop and each thing is connected in some way or another.
1. Pelvic Floor Weakness - My pelvic floor is weak. Very, very weak. I didn’t pass any of my testing. *What is the pelvic floor? Muscles, tendons, ligaments, connective tissue and nerves that support the bladder, uterus, vagina and rectum. Remember, in EDS we don’t make collagen correctly. Collagen is in all of those supportive structures, hence why mine is weak. -This is the reason I can’t carry children. There just isn’t enough support. -This also causes issues with evacuation and causes me constantly recurring UTI’s and issues expelling my bladder.
2. Gastroparesis - Also referred to as delayed gastric emptying. *Gastroparesis essentially means paralyzed stomach. The stomach can’t perform peristalsis (contraction) in order to digest and pass the food to the small intestine in a timely manner. My stomach is emptying at less than half the rate it should be. -This causes me to have acid reflux, regurgitation and occasional vomiting. When the stomach isn’t emptying like it should be, the food either sits in the stomach and brews bacteria causing nausea or comes back up. -This also causes a lot of issues with blood sugar regulation and severe bloating.
3. Small Intestine Dysmotility - *Dysmotility can cause isssues with speed, strength or coordination of the digestive system. My issue is mostly with speed. -This causes the same issues as Gastroparesis, just in my small intestines. (Side note : you’d be shocked how much my intestines and bladder can stretch because of the collagen issues. I mean, I can lose like 10-12 pounds after a day with Magnesium Citrate.)
4. Small Intestine Enterocele - *What is an Enterocele, Kirsten? A prolapse. Yes, a damn prolapse. For some reason I struggle with this one. It literally makes me feel like a cow. -This is an obstruction and affects evacuation for me. My small intestine has slipped in between my rectum and vagina and is putting pressure on my rectum. This is only allowing my evacuation route to be about the size of a straw.
5. Dysautonomia - Dysautonomia is an umbrella term used to describe a bunch of Autonomic Nervous System issues. My form is Postural Orthostatic Tachycardia Syndrome (POTS). *What is dysautonomia? ANS malfunction. Your ANS controls all your involuntary actions; heart rate, blood pressure, blood sugar, temperature,sweating, digestion, etc. -While it’s hard to say how this is really affecting my GI system, it is surely playing some role in my digestion issues.
OMG, we are almost there! You’ve learned so much in this post you don’t need to go to school or work tomorrow! You're welcome!
6. Median Arcuiate Ligament Syndrome (MALS) - This diagnosis is even hard for me to believe; man bodies are weird. *MALS is an artery/nerve compression syndrome. Apparently because of the EDS and lack of collagen, my diaphragm is positioned too low in my abdominal cavity simply due to gravity. While my arteries are not passing blood as efficiently as they should be (which of course causes issues with digestion) we caught it early enough that there would be no residual damage after treatment. However, the nerves are inflamed from my diaphragm constantly rubbing the area and have damaged a lot of nerves and produced a lot of scar tissue. -This causes a lot of upper gastric pain for me, to the point of not being able to wear a bra (no complaints, LOL). The area under my sternum is very tender to the touch and gets very swollen.
-It also causes delayed digestion because the nerve and blood supply are affected.
(See what I did there? Of course you do!) As you can tell it is very hard to know what exactly is causing the biggest problem when so many things have gone haywire. However, I don’t feel crazy about my GI issues anymore. I mean, I know they exist and it isn’t in my head. That’s a positive.
What the heck is my plan of action? Well, I don’t really know yet. MALS is the only thing that can actually be fixed. It would require a surgery in Connecticut. I have put that on hold for now until we figure out a more clear path. The road to a more normal will probably start with biofeedback therapy (a two week outpatient program) to try and help strengthen my pelvic floor. However, I see the surgical team at Mayo on May 30 to figure out what to do about the enterocele. It is a possibility that I would need a surgery to support my intestines, but I will most likely have to go through the biofeedback program first. My case (as always) is a little different because I have EDS and the enterocele is putting pressure on my rectum rather than the vagina.
I know, overwhelming. But remember, I'm okay and we are going to figure it all out.
If you made it all the way through...thankyou!
Remember, "Count your Rainbows, not your Thunderstorms!"
xoxo Kirsten 💕