Introduction-digestive disease sufferer

Posted by mimisayhi @mimisayhi, May 22 9:24am

Hello, I am a 68 year old womaan, I have had digestive problems for 3-4 years now, started out with 2 years of explosive diahrrea after meals. Sometimes even not making it to the bathroom on time. What could be more embarrassing !? And concerning !? I was fighting a losing battle with tge krap food and drink I consumed-TV dinner type processed foods, mac and cheese, soda pop, tons of caffeinated coffee, fast foods- untill I moved near an old friend in Arizona who is a self proclaimed "nutritionist" - who came back into my life telling me how what I ate and drank were krap, chemically treated foods and drinks...that were making me so ill. I started making diet changes- no soda pops, no more beef or pork, no fast foods, no gluten, no dairy (I was a daily drinker of Milk)- organic fruits and vegetables (which are sickenly expensive), supplements and probiotics. During this transition I was diagnosed with Lymphocytic Collitis, Diverticulosis, TOXiN A&B (C deficile)and a stage 1 NET (neuroendocrine tumor) which I had major surgery on February 19 2024 losing 1/3 of my colon). Things got better quick and I was hiking in the mountains 3 weeks after surgery. I drove from AZ to my home in Minnesota April 23 on a beautiful northern lake..and its been all downhill since, windy, rainy, smoky canadian wildfire skies, severe hip and back pain (Physical therapy is helping), severe abdominal cramping every day, multiple bowel movements that are not normal looking all day long, debilitating fatigue, low to no energy and needing a nap every 6 hours . My Drs and GI specialists are all in Arizona, and now I have to start this process finding doctors who know or care how to treat me...which is exhausting in itself, more tests all over again (I went thru CT scans, PET scans, xrays etc galore only 6 months ago.
Just inteoducing myself, is tgere hope and how!? Did quitting probiotics and supplements and green juicing...but for most part keeping some healthy diet changes intact...cause this horrible cramping and returning digestive issues!? I stopped the supplements and probiotics and cheated in a very few things during my move and transition to Minnesota one month ago, more due to address change for shipping and 1400 miles of sole travel across country.

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cgper | @cgper | May 23 7:37am

It might help to go back to routine in Arizona. Supplements, probiotics, acupuncture, and diet are essential. If I cheat, all comes back, gradually but back again.

rozy288 | @rozy288 | May 23 11:24am

Yes if you felt so much better in AZ , you should go back to that routine .
At least you go some relief for a while . I’m 10 years in … not a days relief 🥲. I’ve done it all , 7 diagnoses. 6 Gastros , 20 plus tests . Nothing I’ve done ✅ or tried has helped me .
I hope you get well soon .

shelleyw | @shelleyw | May 24 1:31am

My goodness this sounds miserable for you. My one suggestion would be read about Hyperparathyroidism, nothing to do with your thyroid. The parathyroid glands (4, like a butterfly) in your neck, is the calcium controller in our bodies. Anyone can have problems with this, but it's far more common in females 50+. I am 65, female.
I got my first intro to this 17 years ago. My vitamin D was low, my PTH was whacko, low, mild, so high it was in the chronic kidney failure range. I don't have kidney disease. 2 years with my PCP altering vit D doses, then 2 years with an endocrinologist doing the same thing...finally sent me to GI... I had celiac disease and since I didn't know it, I ate gluten my entire life. I was asymptomatic or had opposite symptoms, I was shocked. The diagnosis was secondary HPTH caused by malabsorption. The CIC started getting worse. Colonoscopies, all the "protocol " meds, miralax by the case, Metamucil, ECT. I have now been diagnosed with primary HPTH and elevated calcium. The drs did such an awful disservice to me, by saying I was healed, because they found my celiac and my small intestines were severely damaged. The much bigger issue with HPTH is elevated calcium. This wreaks havoc on the smooth muscles, ie, pooping muscles.
I have been in the Hyperparathyroid side for about 6-7 years. Translation, 6-7 years of drop dead exhaustion, CIC so bad I thought it might just kill me. My muscles are so weak that I have to keep my poop In almost diarrhea stage, because I can't push anything out.
Take a look at it. I can't believe that this tiny glands are SO vital to the calcium levels. Low or high calcium is BAD. I just thought drink milk and it affected my bones. This is the least of what calcium does in our body. I have gotten 3 opinions, first my regular endocrinologist, Wrong!! Then two more that independently confirmed that I need surgery. There is nothing to except surgery for Hyperparathyroidism and elevated calcium. It may not help with your issues but it is worth looking at, online. Parathyroid.com and swparathyroid.com each have great info and each has their own "calculator ", you can put your own data in and see what it shows.

1775house | @1775house | May 27 6:06pm

I am not going to say very much but when it comes to digestive health even how long you cook some good health foods ( for me broccoli ) can make the difference whether I have an easy night or one with cramping that I have worked with my GI doctors to get a grip on eating all the good stuff without much pain. I leave the rest to all of you folks who can directly help. God Bless.