Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Well..some of the illness I don't know anything about.. but..I'm 72 and have been constipated all my life.. never really bothered me.. then.. an antibiotic blew a hemorrhage in my stomach and it was "all hell" from there.. for the past 6 1/2 years.. so I feel you..I have tried Amtiza Linzess and finally Trulance.. the Trulance worked and I only have to used Miralax once in a while..or some prune juice..(I have maybe..the rheumatologist isn't sure ..scoleroderma, systemic. a surprise diagnosis of fibromyalgia(WPI 19..who knew? ..compaired to the stomach stuff!!..Hurts!!) And am in 3rd stage kidney failure (no one told me for 3 years and have alot of kidney stones..) I also have panic attacks (caused p[rimarily by this being sick) and anxiety and can't sleep and really tired all the time..SO step one I think.. talk to your Gastro..I always start there..if it isn't working nothing else matters..(I've been to ER so many time and hospitalized at least 3 for constipation.. once had a blood pressure of 60 over 40 because I sweated out all my fluids trying to get something up.. or out any way possible!! I was diagnosed with pyloric stenosis which they booted 3- 4 time to stretch it (wasn't born with it.. probably due to the IDK scoleroderma) and a tortuous colon.. he said your bowels go up and down now sideways you've been constipated so many years.. you are so young to be suffering so much and there is a solution out there.. talk to a good rheumatologist..(I just got diagnosed with CSU Chronic Spontaneous Urticaria by an allergist.. I finally went and saw one).. you might try.. these tests to.. Celiac..and Alpha Gal. watch out for sucralose..it's a good gut bacteria killer..(I take 2 VSL3 Probiotics every AM).. try some elimations from your diet and keep notes...God healed my tortious colon 2 weeks before I was going to see a surgeon.. pyloric stenosis is healed to.. I am going to pray for you sweetheart!! You are far too young to be going thru all of this!! Lifting you up to the Lord right now!!
-
Like -
Helpful -
Hug
3 ReactionsI was slightly older 40ish when I started lipitor. 4 years of lipitor had my gut in such distress that I started bleeding. I now cannot take any version of a statin. You dont mention what else you are taking but even OTC supplements can change your digestive system. You might try getting off everything or looking at your diet to start. Food allergies can also be a problem.
-
Like -
Helpful -
Hug
1 ReactionTo Medicalunicorn, please find a good Traditional Chinese Medicine doctor/acupuncturist. They could very likely help you turn all this around.
@medicalunicorn Welcome to Mayo Clinic Connect! You have listed many autoimmune diseases; do you have a rheumatologist or an endocrinologist who manages your levothyroxine? They would be good places to start putting this puzzle together. Will you let me know when you get an appointment?
@mliz Welcome to Mayo Clinic Connect ! Do you use a traditional Chinese doctor or acupuncturist? Why have you come to the Mayo if you like Chinese medicine? No judgement on you, just curiosity.
Do you have an autoimmune disease that you have questions about?
@standinginfaith My colon doc told me that I have a permanently enlarged colon from taking MiraLAX daily. I had constipation before and now I have constipation, an enlarged gut, gas and cramps. Can’t win.
-
Like -
Helpful -
Hug
1 ReactionIf you’ve only seen 1 GI doctor get a second opinion. Have you had the test that you swallow the pill with a camera. I have fibromyalgia, ibs with constipation, ulcerated colitis ( in remission) cutaneous lupus. I had hashimotoes with hypertension for 10 years, which turned into Graves’ disease etc. A friend of mine had Crohn’s disease but the first gastrointestinal missed it. Not all doctors are good at what they do. Good luck, praying you find the answers.
-
Like -
Helpful -
Hug
3 Reactions@htolan I'm so sorry ..I'll pray for you!!