My story - Diverticulosis (SUDD) Symptomatic uncomplicated Diverticular Disease, surgery scheduled May 4th.

Hi, 60yr old F. Sorry this is long. I am hoping this post might help people that might be going through what I have been going through since 2012 without getting any help. I don't want to argue with people about this as I am very ill. The purpose of this post is to tell MY story. My post will speak for itself. If you have opinions fine, but this is an actual real condition, although rare, and most GI doctors do not know about it and blow you off, which is what happened to me until I did my research and figured it out myself, consulted with a colorectal surgeon, and now I am scheduled for surgery May 4th.

First off I want to say that there is ALOT of misinformation on here about a condition called SUDD. People keep commenting that Diverticulosis pouches do not become infected or show any symptoms. This is not true. There is an actual rare condition that is not well known called SUDD (Symptomatic Uncomplicated Diverticular Disease). This is different than Diverticulitis.

https://pmc.ncbi.nlm.nih.gov/articles/PMC10066719/

You can have bacteria inside the Diverticulosis pouches. These pouches trap stool and create mini-areas of stagnation that allow bacteria to overgrow and can trigger localized infection, severe inflammation, irritate the gut wall and nerves causing severe chronic LLQ pain, pressure, severe bloating, chills, fever at times, mucousy and foul smelling BM's, odor in your pee, and altered bowel habits. The pouches can become infected! They can constantly release toxins and cytokines in your bloodstream, making you feel "poisoned" all the time, a type of "smoldering" if you will. The problem with the CT scans and colonoscopies is the bacteria inside the pouches don't show up on the scans, so if there is no "active" diverticulitis, GI providers or ER docs won't take it seriously. That is what happened to me.

Some background. I have had ME/CFS and Fibromyalgia since 2000. I became disabled in 2018 as my condition worsened. I was considered "moderate" up until now. I have been dealing with flares since I around 2012. I would go to the ER with severe LLQ (lower left quadrant pain), and they would only find "moderate DiverticulOS" in the Sigmoid area, not acute Diverticulitis (ITIS). Sometimes they would send me home with antibiotics. Over the years I went to ER FIVE times for the same severe pain, the last time in 2022. Each time I would get a CT scan with the same result "moderate DiverticulOSIS with NO acute Diverticulitis. During that time I would get maybe 1-2 flares a year. By 2023 it started escalating. I was getting flares every TWO months. I also had SEVERE inflammation through my entire body causing my chronic conditions to become severe. I tried everything, low fodmap, cut out red meat and other foods, went gluten free, walk on treadmill when I can, stay hydrated, tried natural supplements, fiber (made it way worse) and anti inflammatory meds. There comes a point where the sigmoid colon is just too far damaged and nothing works. My GI provider kept blowing me off but did prescribe IBSrela for chronic constipation which did help but it did not help my SUDD. I even did a round of Xifaxan (Rifaxamin) and it did nothing.

It always starts out the same, severe constipation, severe bowel pressure, very sleepy feeling, then chills, sometimes fever, then severe pain. Then when I do poop, it smells horrible (toxic). I try fluids for days, and it doesn't resolve. I have to get antibiotics to resolve it, usually from telehealth companies as my GI won't help.

Since 2023, because of constant flares and severe inflammation, my ME/CFS became severe. I developed Lipedema, and MCAS in 2024 and my gallbladder went bad in 2025 and I had it removed. The inflammation caused my DHEA to plummet, my night cortisol to spike 20x the normal range, and I feel like I am being poisoned. I have been homebound and mostly bedridden because of the flares and antibiotics. I have always taken a probiotic and I take Florastor when I have to take Augmentin. I am allergic to Cipro and Bactrim thanks to developing MCAS in July 2025. In the last 6 months, I did my own extensive research and was convinced I had SUDD. There is also a few people on Reddit who have this condition but it seems they haven't gotten help for it and are being dismissed. So I brought it up to my GI provider. She did not know what SUDD was and dismissed me.i was fed up!

I printed all my CT scans off the hospital patient portal and Radiology clinic, got copies of my colonoscopies all showing "moderate Diverticulosis", wrote a detailed cover letter, and found a colorectal surgeon at a different specialty clinic. My husband dropped off the packet on a Friday and by the next Monday morning I got a call and had a consult. This is a busy specialty clinic. The appt was 6 weeks out but I was so hopeful they prioritized me.

I met with the surgeon and she had heard of SUDD. She was a bit hesitant to do the surgery due to no documentation of Diverticulitis, but after she reviewed everything and how the inflammation and flares were greatly affecting my quality of life, she agreed to do surgery and did think she could could help me a lot. My primary care doctor also agreed as she had seen me go through this for a long time and what it has done to me. She thinks my health will improve drastically after this diseased section is cut out. I have also talked to other folks with ME/CFS, Fibromyalgia, POTS, MCAS whom have had had severe inflammation causing them to become severe, and had a Sigmoidectomy and they said their health improved dramatically after their surgery. So I am very hopeful!

I am scheduled for Laparoscopic Sigmoidectomy surgery May 4th. It wish it was sooner because I am extremely ill, but I am grateful it is scheduled! I have a rash on my chest right now because the inflammation has become so severe, my immune system is breaking down and causing severe histamine issues and exacerbating my Asthma. I also just had a flare Feb 5th and they are coming every month now.

I hope this helps people. If you have this condition, you don't have to live this way! Please send me prayers and good wishes instead of negative comments. I have been through hell. Thanks for listening, and please advocate for your own health!