Debilitating multisystem dysfunction from diverticulitis surgery

I am a 35-year-old male with a decade-long history of progressively debilitating multisystem dysfunction originating from catastrophic diverticulitis surgeries in 2016. I am currently in a state of assumed acute decompensation, characterized by rapid weight loss: Loss of +/- 30 lbs. in 4 months., functional urinary obstruction, and systemic inflammation (CRP 20 mg/L toward the end of an episode).
Recent imaging (MRE, Nov 2025) confirmed bowel loops tethered to the ventral abdominal wall. However, local General Surgery declined intervention (Dec 2025) due to the complexity of the "hostile abdomen," leaving me with an "inoperable" mechanical defect that requires tertiary-level reconstruction. This complex presentation is further complicated by a 'Double Crush' phenomenon, involving confirmed L4-L5 spinal nerve root compression (2020) exacerbating the pelvic neuropathic pain.
This period established the "Hostile Abdomen" and deep pelvic scarring.
Event: Severe Diverticulitis complicated by Colovesical Fistulas (Bowel connected to Bladder).
1. The Surgical Series (4 Surgeries in 2016):
• Laparoscopic Sigmoidectomy (Attempted): Planned ahead of time
(General Surgeon/DO). Procedure failed/converted.
2. Emergency Open Sigmoidectomy (Ileostomy):
• Performed by General/Trauma MD because original Dr.
was unavailable.
• Outcome: Sigmoid colon removed, temporary ileostomy bag placed.
3. Failed Ileostomy Reversal:
• Attempted by original Dr. (and Partner).
4. Final Colorectal Anastomosis:
• Successful reversal 8 weeks later.
5. Key Provider:
• Urology:
i. Managed the fistulas during this crisis (2016). Significance: He knows the deep pelvic anatomy was compromised early on. Even though this was the first person to dismiss my issues and my theories which are now coming true.
I am currently experiencing the following functional deficits:
1. Failure to Thrive (Nutritional Crisis)
• Rapid Weight Loss: Loss of ~30 lbs. in 4 months (230 lbs./199.4 lbs.).
• Early Satiety & Nausea: Eating triggers immediate nausea and "fullness" due to mechanical restriction. Diet is limited to soft/liquids (mashed potatoes, broth).
• Documentation: Primary Care confirmed "unhealthy weight loss due to lack of appetite" (Oct 2025).
2. Mechanical Tethering (Ventral Abdominal Wall)
• "Stuck" Sensation: Specific, localized pulling sensation at the 2023 Hernia Mesh site (periumbilical).
• Positional Obstruction: Acute episodes where bowel seemingly "locks up," requiring physical maneuvering (kneeling) to release the bowel loop (e.g., event on Dec 7, 2025).
• Correlation: Matches MRE finding of "small bowel loops closely opposed to ventral wall."
3. "Double Crush" Pelvic Dysfunction
• Urinary Retention: Inability to initiate voiding unless the rectum is empty ("Can't pee until I poop"). The struggle to urinate is constant. It is exacerbated by any gas or fullness in the colon. It is also worse during the cold or if I am physically cold, anxious, or shivering at all.
• Neuropathy: Retrograde burning in urethra ("flames gone backwards") and chronic left-sided testicular pain.
4. Systemic Inflammation
• Elevated CRP: 20 mg/L. Indicates active tissue trauma/inflammation (Autoimmune/Infectious causes ruled out).
• Hyperhidrosis: Profuse sweating secondary to sympathetic upregulation/pain.
• Fatigue: "Crash cycles" rendering the patient physically unable to work. Gabapentin has helped relieve this.
5. Symptom Classification Guide
• ZONE 1: ABDOMINAL WALL & BOWEL (The Mechanical Zone)
▪ Status: NO GENERALIZED PAIN.
▪ Clinical Definition: Mechanical Obstruction / Ventral Tethering.
▪ Patient Experience:
• Restriction: A sensation of being physically "stuck" or "tethered"
to the abdominal wall.
• Cramping: Intense muscular contractions attempting to push past
a blockage.
• Distension/Bloating: Hard, physical fullness immediately after
intake.
• Positional Lock: Bowel loops feel "caught," requiring physical
movement to release.
▪ Incorrect Documentation: Do NOT write "Stomach Pain," "Abdominal Tenderness," or "IBS-type pain." Pain is too quickly dismissed. This is not a simple pain issue!
▪ Etiology: Physical Adhesions (Confirmed on Nov 2025 MRE).
• ZONE 2: PELVIS, PUBIC & URETHRA (The Neuropathic Zone)
▪ Status: ACTIVE NEUROPATHIC PAIN PRESENT.
▪ Clinical Definition: Double Crush Neuropathy / Radiculopathy.
• Patient Experience:
• Urethra: Retrograde BURNING ("Flames gone backwards") specifically when retention occurs.
• Testicle (Left): Chronic ACHING and sharp neuralgic zaps.
• Pubic Symphysis: Radiating nerve pain connected to spinal
history.
▪ Correct Documentation: "Pelvic Neuropathy," Pudendal/Genitofemoral Neuralgia," "Radicular Pain."
▪ Etiology: Nerve Entrapment & Confirmed Radiculopathy.
▪ Documentation: Diagnosed with "Radiculopathy, lumbosacral region (M54.17)" and "Low back pain (M54.50)" (March 2022).
• Mechanism: L4-L5 spinal nerve root compression compounding
with pelvic adhesions.
I have hit roadblock after roadblock over the years and having to self-advocate. Which has earned me the term of combative. How many other "combative" patients are in this forum? Hopefully lots, so I know I am not the only obsessive one on making sure my care isn't just how someone else wants it.
Has anyone else dealt with similar issues? Any advice? Currently I have submitted my info to Mayo, Penn Presbyterian, and trying to with Johns Hopkins. I am 35 years old and have not been able to sustain or even settle myself. I am in mass debt, school, etc. I am lost without actual direct guidance from someone who believes me and accepts I am not stupid or just Dr. Google.
*Parts of this summary (which is now considered my Patient Bio and Dossier) was produced via assistance with Google Gemini which utilized every one of my care documents, discs, images, dr notes, and my own input to compile this description of what I am dealing with in words that make it more understandable to a provider, and those self-advocates who have spent years, hours, days, researching legitimate information, like I have.