PAIN and MRI-long post

Wow, again. That's all I can say. My situation pales in comparison to all that you are going through. There is nothing I can say that would be of much help, other than you are in my prayers.

As for the math...I so hear you! I dropped out of taking math early in the 10 grade. We had started Algebra in 9th grade back then. I could 'do' it, but I hated it, and it wasn't 'required' to graduate.

Years later, I wanted to go to nursing school. I only scored 13 on the entrance test math, 76 or better was passing! There was a lengthly delay for the 'math for meds' course and since my other scores were good, I was allowed to start the nursing course. During pharmacology we learned the math process for converting pounds to kilograms, we learned the math process for i.v. drip rate factors, and I scored 100's on tests and quizzes! Then the math for meds class started and this time, I scored a 34! The instructor was wonderful! She brought us from 'simple' math right on through the more complex algebraic equations and by the end of the course I scored a 95 on the final! She was able to help us all see the 'reason' for the math...give us real life applications. Perhaps there is a way to find a real life application for what interests your son. Having a 'reason' to learn something is a great motivator. Watching episodes of the show 'Numb3rs' might inspire him as the opening of each episode explains a bit how 'math' is all around us. The rest of each episode shows how math can be used in fighting crime. I don't know what your sons interests are but I'm sure there is a way that math fits 'into the equation'.

I'll be honest, I assumed that was what the word meant. I know I have the hernia and that was a word I haven't seen before

I have a super strong binder that I've been wearing. I call it my medieval corset.

PT has been focused on core strength, so posture is part of the session. As far as weight loss, I've lost close to 100lbs. Being on the steroids for 10+years caused the weight to pile on a LOT. The gi and swallowing complications both have caused my weight to plummet. I'm working with a nutritionist to try and regain weight.

According to both surgeons, at two different medical facilities, it simply must be fixed. They are concerned about the size of it and of how quickly it occurred after the surgeries. I know both surgeons spoke with the surgeon down at WF since he is the one who performed all the surgeries-he is not my favorite individual on this earth. With how long the abdomen was open over the summer they feel that the mesh is needed to strengthen the area and ensure healing. I mentioned that hernias generally don't get larger over time and that I can live with the binder, but since I have the tissue issue(ha!) they all feel it might widen. Without the binder, I can't even see my feet.

Bowel issues have been a problem for years due to the nerve and tissue problem. I use miralax, mag citrate, amitiza, and stool softeners weekly. A few times a year I end up inpatient for more aggressive measures with a nj tube. Since I'm already prone to bowel problems, my gi docs(one local and the other down south who coordinates the care) want to remove the high risk factor.

And then the fluid pockets add to the fun. Neither can be reached using a needle to drain, it's been tried before. The one on the right is pressing up against my lung. As the report states, they are concerned that both are an abscess. I had previous pockets, both drained by intervental radiology down at Wake. They were easy to reach.

I don't know...I got the second opinion because I'm not a fan of the idea. I guess I actually got a 3rd since they consulted my nemesis who did the surgeries. Shoot-add in the two gi drs and it's practically a party.

I have and they both freak me out.

This summer was just sooooooo bad, and I can see how this has happened. Part of me just wants to wait and see what happens, but I also understand the urgency of those in my party-and not all of them were invited, ugh.
Here's something funny: One surgeon took a look at the scan and me and said, "Sweet Land'o Lakes!". I asked-like the butter? Yep

Another concern is that I'll start the rituxan/cytoxan treatments again leaving me much more open to infection. Right now I'm off treatment which helps a bit with my immune system. It takes months for the meds to clear my system, so if an emergency surgery is needed, I would have a greater chance of complications. Weather permitting, a treatment plan will be established tomorrow.

I'm honestly at a loss. A pretty good number of drs from multiple medical centers feel it is needed, but my mind is still caught up with what happened a few months ago.

Rocckyd:
Having survived a harrowing ordeal with sepsis myself, I will admit that some of your posts and writings are at odds with what I experienced and leaves me scratching my head.

I do not see your CT scan findings as alarming as you outline. Lots of people who have undergone multiple open abdominal surgeries live with HUGE hernias, where a segment of intestine actually protrudes from the abdomen due to a large tissue deficit. Your CT narrative uses the word “diastates,” specifically. This is a separation of the midline connective tissue referred to as the linea aspera, most often due to an enlarged abdomen (late term pregnancy; obesity/overweight where the excess weight is carried around the mid-section, often called an Apple-shape figure as opposed to a pear-shape figure where the excess weight is carried around the hips or thighs).

A hernia becomes an emergency when/if a segment of intestine becomes twisted or kinked as it protrudes through the hernia/complete tissue deficit. This is called an incarcerated intestine. In becoming twisted or linked, vascular blood supply is compromised. The normal medical course is to place an NG tube with admistration of generous IV fluids. This is often sufficient to provide a negative atmospheric pressure that allows the intestine to self-mobilize and release itself. Generous IV hydration produces a moist and slippery omentum, upon which the trapped segment of intestine is able to squirm and squiggle and free itself. A 92 hour time clock is started when the individual presents to the ER. A mechanical obstruction that does not clear within 92 hours with conservative treatment (NG tube, IV hydration, bowel rest) then becomes a surgical candidate.

I have had several mechanical small bowel obstructions. I am a vested veteran. I have experienced both scenarios. I have had obstructions clear with conservative management. I have had obstructions that necessitates surgery for lysis of adhesions.

When a person has sepsis due to a bowel perforation or leakage, bacteria are freely released into the once prestige abdominal cavity. The bacteria make their home in the many moist and warm tissue folds and crevices, and rapidly multiply. It is the exponential proliferation of gram negative bacteria that makes a bowel injury life-threatening - the bacteria crossing the membrane coverings of blood vessels and entering the blood steam for wider dissemination.

IV antibiotic therapy is rapid and aggressive. Broad-spectrum. But the “bugs” that populate the intestinal tract are virulent and not easily assuaged. The bacteria are smart and constantly mutate. Even with high dose and long-term antibiotics, a person who survives sepsis is never 100% bacteria free of harmful intestine specific bacteria. A sub-clinical level of bacteria will always remain. Lurking in the warm and moist tissue spaces and crevices and divots. Given an increase in body stress or a weakened state of the immune system, a survivor of sepsis remains vulnerable to the conditions that enable the latent bacteria that remained behind to repopulate and flourish.

That you have a surgeon(s) not only offering but suggesting that you need immediate placement of mesh is concerning. You are not even 6 month’s post acute sepsis. The likelihood of residual lurking peritoneal bacteria is high. Bacteria love biological and artificial mesh. Bacteria love the honey-comed artitectual configuration of a sheet of mesh. Bacteria love the warm and moist omentum covering. Placement of mesh is an inviting environment to bacteria.

Mesh that becomes infiltrated by the body’s own bacterial residents is a true nightmare, as you might well imagine. It is a life-threatening course.

Surgical removal of the mesh and open irrigation of the abdomen is necessitated. The incision is left open to heal by secondary intention or a wound vac is placed. Recovery is a long slog and many people are left with lingering disabilities.

Future mesh placement is out of the question. Future abdominal wall reconstruction is out of the question. Future repair of the original abdominal wall deficit is out of the question. These poor individuals live with HUGE HUMONGOUS hernias. There is no repair or surgical option. And they live with the real threat of bacterial repopulation and recurrent abscesses.

I can see many warnings not to proceed with a repair of the abdominal weakening. I see no compelling reason to proceed.

Know that the prominent factor that leads to abdominal wall weakening is excess weight carried around the abdominal girth. Excess weight produces a substantial outward pressure, along with the accompanies pressure of organs pushing outwardly and wanting “out.” Wearing a spandex/compressive lumbar support is important because it provides a counter inward pressure gradient. Lying down, supine, to rest has similar benefit to reduce the hernia/tissue deficit.

I have had the misfortune of having encountered some serious health speed bumps in the last 6-8 years. Life, as I knew it, changed in the blink of an eye. I was an engaged professional and long-distance runner before chronic ill health found me. Like many of us on this forum, I live in a body that has become a stranger to me. My body is no longer my friend.

One thing that am very careful of as I navigate the maze of health care, is to make certain that in choosing a potential treatment or procedure that I do not place myself in the misfortunate position that I become worse or lose what sliver of health or function that I have. Quality of life matters to me. do not want to be worsened by a treatment or procedure. I will stay the course and decline a treatment, medication, or procedure where there is a possible risk of further erosion of health and function.

Be exceptionally careful and thoughtful in any decision that you make. That is my unwavering advice to you.
Karen

My post to you is one that stresses the utmost of caution as you consider surgical placement of mesh.

Nothing more. Nothing less.
Karen