Anyone else have a Redundant / Tortuous Colon?

The pain is most of the time horrible, doctors have me on narcotics. Which is also know to cause constipation. I did call mayo about charitable care or financial assistance, told since I have medicaid I wouldn't qualify. Only for people that have no insurance with a rare disease. Is there any other way to get treated at Mayo?

Hi @les2436,

I saw that you posted a comment after viewing the Dr. Amy Oxentenko’s video on chronic abdominal wall pain (https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/chronic-abdominal-wall-pain/).

You wrote, "I have redundant colon, in 3 areas, sigmoid, transverse, and desending . Only have Florida Medicaid, Need Help ASAP. Pain horrible, can't afford Mayo.” I know it’s disheartening, but I was wondering if you know about Mayo Clinic’s "Charitable Care and Financial Assistance” program? Mayo Clinic appropriately serves patients in difficult financial circumstances and offers financial assistance to those who have an established need to receive medically necessary services and meet criteria for assistance. You can find all the details here:
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/financial-assistance
In the meantime, may I ask how you are managing the your pain?

Agree about the frustration with gastro docs that don't seem to know much, or care much. Same with me that my Family doc is better. But they were all wrong in advising me to eat MORE whole grain fiber. It made my life miserable, and when I stopped the whole grain regimen, many of my problems were toned down. The FODMAP diet and/or the plant paradox diet have helped immensely!

I wish you the best also, and hope you find that perfect regimen for your situation. It's taken me about a year, on and off, with many setbacks. But life is better now and I know that whole grain fiber is not my friend.

Hi Deedee.
Sorry that you feel very much that nothing has been resolved, but that happens sometimes, we are at the mercy of the doctors, and sometimes they are not compassionate with the situation of our problems, I have heard many times that nothing is resolved by having this operation, then I will try to avoid it as much as I can, for now with certain medications and probiotics a perfect diet, it seems that it is a little better controlled than before.
I love my family doctor she understands better how it is and the advice that has given me for now improves a little my situation, I am afraid to go back to see the gastronologists, I have seen 4 different in the time of 3 years, It is horrible that these doctors know even less than we do, all have given me different negative advice, as if my life is already ruined, and it is not true.
Anyway, I wish you the best, patience but do not let this prevent you from doing a better life, a little changed but it is your life.
Take care

I tried pelvic floor PT for over a year and it did not help me. I am missing a pelvic floor muscle. So after the removal of 18” of colon and the pelvic floor lift, none of my issues have been resolved.

I also had 18” of my colon removed 1 1/2 years ago. I wish I could say that there was a big improvement.

Yes, it contains milk. That's why I also had stomach pain, but it happens to me if I take a whole capsule, then what I do suggested by my dietitian, I open it, and for a week I take only half the powder that I take out of the capsule , the next week I take everything and I'm fine, the taste is good I put it on a toast, in cereals or in what normally you have breakfast every morning, to avoid that everything falls suddenly hit the stomach.
I feel pretty good, it has regularized my colon.
good luck.

I tried Align and it gave me terrible stomach cramps...I later read that it contains milk ..does the capsule contain milk? If so what is meant by taking in a toast?
Thanks,
Patty

Your gut microbiome is a vast community of trillions of bacteria and fungi that inhabit every nook and cranny of your gastrointestinal (GI) tract. The human colon is a real health organ. There are over a thousand separate bacteria living in your colon, believe it or not. The total number of bacteria can reach tens of billions, more than ten times the number of cells in the entire body! These microbes mostly live in your lower intestine (the colon) and outnumber all the other cells in your body put together.

These bacteria, when treated right, can do some amazing things for our health. They have a major influence on our metabolism, body weight, predisposition to illness, immune system, appetite and mood. They can provide numerous health benefits that range from strengthening our immune system to helping us with weight loss to sharpening our cognitive skills.

What are probiotics?
Healthy, probiotic foods
There are many very healthy probiotic foods you can eat which include numerous varieties of fermented soybeans, dairy and vegetables. If you can't or won't eat any of these foods, you can also take a probiotic supplement.

Probiotics help improve your health in a variety of ways:

Break down and digest food. Reduce bloating and constipation. Support overall gut health and improve digestion. Ensure the immune system works well
They play a role in how you think and feel. Gut bacteria can improve the production and regulation of hormones, such as insulin and leptin. Probiotics have also been found to produce neurotransmitters such as serotonin, dopamine, and GABA — which play a key role in your mood.
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What are prebiotics?

Prebiotics are present only in plants, mostly vegetables. They are the non-digestible part of foods like bananas, onions, garlic, Jerusalem artichoke, the skin of apples, chicory root, beans, and many others. Prebiotic fibre goes through the small intestine undigested (unchanged) and is fermented when it reaches the large colon.
Prebiotics are also available as supplements, one is called Oligofructose. This small molecule is acted on very quickly in bacteria on the right side of the colon. Inulin, on the other hand, is a larger molecule and is fermented more slowly on the left side of the colon.
Healthy, prebiotic foods
Prebiotic foods are high in special types of fibre that support digestive health.

I have torturous Colon, and I take a capsule a day of Align Probiotic Supplement, I break the capsule and I take the powder in a toast, after three weeks I feel very well, it has helped me in my bowel, with the inconfort that I had , less gas, less pain, and I can have an almost normal life, I've changed my way of eating, and it seems I'm doing much better.
I hope this helps you.
Take care.

What is the difference between probiotics and prebiotics. One reference I have says to use prebiotics. Yes, it seems to be the case with lots of folks on this blog that gastro specialists are not much help with diet suggestions or advice. Cannot figure that out!