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Unexplained GI distress and abdominal pain
Hi all,
I'm writing because I'm out of ideas and would like some help. In the past two-ish years, I've struggled with abdominal pain. After three ER visits, a same day, and a follow up, I'm not sure what to do. When I went in to see an internal medicine specialist for a follow up (my PCP was booked), she told me that my bowels sound like an 80 year olds (Im 32). I drink 100+ oz of water a day, when I take fiber supplements it makes the constipation way worse, I take 2 caps of miralax daily (it doesnt always help). Ive had 2 CT scans, ultrasoumds, xrays, an endoscopy, HIDA scans, pelvic floor dysfunction testing, endoscopy, and colonoscopies ×2.
For the past few weeks I've had blood with every stool. I've tried to manage hemorrhoids, but short of having watery stools I don't know what to do. I have many medical diagnoses that complicate this issue. I've posted here instead of GI because Im partly convinced that i have an undiagnosed autoimmune disease that I haven't seen.
My diagnoses: Charcot-Marie-Tooth type 1c/peripheral neuropathy, Fibromyalgia, chronic fatigue, Mast Cell Activation Syndrome, POTS/autonomic neuropathy, Endometriosis, Hypothyroidism, Ehlers-Danlos Syndrome (hEDS), pelvic floor dysfunction, anxiety, depression, adhd, ptsd, sleep apnea, low libido, nightmares, periodic leg movement disorder, chronic constipation, hemorrhoids (due to constipation), TBI x 2 in last 15 years,
The constipation started in 2013 when I turned 20 and has been chronic since. Upping my levothyroxine tended to help the constipation slighly, but i still feel exhausted a lot.
Any help, advice, or recommendations are highly appreciated. I'm sick of feeling full of shit, literally.
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Honestly it certainly does sound like an autoimmune disease.
I’m sorry you are having so much trouble.
Sounds like you have gone down all the right paths.
Keep researching don’t give up !
That’s what I am doing 😀
@medicalunicorn I am sorry you are suffering with this. Are you diagnosed with MAST?
There are things you presented, which do not get solved, but get managed. And you may have to accept those things and move on learning how to manage them. Grieve your old body and get on with managing the diagnosis.es.
I was misdiagnosed for 25 years on varying things which I ended up making go away. There are some conditions that I can only manage.
I had ruined my intestines by the time I was 60 because I didn’t know I was lactose and casing intolerant. Do a cheap genetic test and upload it to one of those Health places to find out if you have that Jean. Not knowing this, I ended up in the hospital twice with what mimmiced a heart attack. It was just the allium family.!!! no more eating garlic or onions for me. I stick to scallion tops and maybe an occasional red onion now that I’m eight years out from being on the FODMAP. Google Monash along with FODMAP. Start the diet today. I went to multiple gastroenterologist once they were through poking and prodding finding nothing. It was the FODMAP which 100% stopped the stomach aches and the IBS. It doesn’t get rid ibs it’s one of those conditions you have to manage.
Maybe don’t worry too much about the constipation because nerves can cause constipation too. When I go to the hospital for surgery or childbirth, I don’t poop for two weeks no matter what they give me. And then like clockwork. It returns after two weeks. I don’t worry about it anymore. I’m 69. The anesthesia puts my motility to sleep.
You may be eating the wrong fiber you will know when you get on the FODMAP. A lot of people eat non-soluble fiber, and that screws your system up.
I am so motility regular it’s crazy as long as I stay within the regime my body requests. For me it is a warm liquid in the morning. I prefer coffee, some prefer water, tea, with a little squirt of lemon. I a good assortment of fruits and vegetables along with lean proteins and a COMPLEX carbohydrate. Try and stay away from processed foods. If you’re working during the week cook on the weekends so you always have stuff to pull from the refrigerator that looks interesting..
Take a good supplement I like vitamin code for women raw. Mines over 50 because I’m 69.
When your digestion is screwed up, your intestinal track doesn’t take the nutrition. Your body needs and your body may be starving for good nutrition.
I also recommend finding a great acupuncturist or going to your local acupuncture college for treatmentbecause they will work on you till they resolve your problems and they are cheap.
It’s not easy being a woman because our bodies change at 30, 45 and 60 and I don’t mean for the better! I’ve had hidden inflammatory problems for most of my adult life. It’s just the way the cookie crumbled.
I checked nutritional chemistry in college and health because it fascinated me. My body always fascinated me and I want to stay healthy.
Get your hormones tested as soon as possible so you have a baseline going forward so you know we know when you enter menopause or even perimenopause that super important to have your hormones balanced most women don’t know to get their hormones tested before they need to get their hormones tested!
Have your cortisol tested.
Find a good doctor that supports you.
What you are doing and have been doing is going WIDE. You need to find your CORE and concentrate your efforts. I entirely empathize with your stress and heartache. I remember those days of not knowing where to turn and having my entire body shut down and how depressed I was. The answer came entirely from left field.!!! I gave blood to help others children, because I was so depressed. I knew I’d feel good if I did something for others. The karma finally paid off and I received a letter from the blood bank that I had hepatitis C unbeknownst to me for 25 years. unbeknownst to me hiding in my body! Once the hepatitis C was discovered, all of those disparate conditions could be brought into focus. I was put on a horrible medicine and I was cured! But then I started down other roads, but at least I was starting to know which battles I had to be my own advocate for and which ones the doctors were going down THEIR rabbit holes and not mine. I promise that if you don’t roll up and defeat that you will find that you’re suffering build character and you can go on to help others. In the meantime, I recommend having some go to things like therapy Art, reading, a list of movies, good foods that don’t bother your body, getting outdoors, even if it’s sleeping under a blanket and learning to be your own best friend. Get an emotional support animal because I think for me that is my best companion. If you need to write to me in private, after you’ve tried some of these things go for it I hope something helps.
Our bodies are unique, but they actually are very similar so you’re not really a unicorn. You either haven’t accepted one of the diagnosis or you haven’t gotten to it yet. It’s hard to know the difference when you’re just starting down this trail!
Blood in your stool is a warning that you need a colonoscopy to see about polyps and colon cancer. Especially with all your bowel issues. Maybe you did that already? Good luck.
@standinginfaith
My heart goes out to you for all you’ve been told you have.
I had a good six year journey with a stomach issue, was put on a med that helped while I was on it, but symptoms returned when off.
Long story short, I turned to functional medicine. It was exactly what I needed!
If you live in California, you’re in luck. The functional medicine doctor I saw for 4 years is only licensed in California.
If you’re in another state, you’re can find one by city and state on ifm.org. Look for one who specializes in stomach issues.
I wish you the very best in finding the right issue or issues you’re dealing with that can be treated correctly.