Diverticulitis Journey - Complicated Order!

[BeamerBikes]

Figured I'd share my medical story - about 10 years ago I had my first case of diverticulitis.  Fever, chills, abdominal pain that went away the less I ate.  It landed me in the hospital for monitoring since if left untreated, you could go septic quickly.  

What's diverticulitis?  

Basically, pockets form within the folds of your colon. Food debris can get stuck in there, and cause inflammation and pain. Enough inflammation and lack of movement - it will cause a tiny hole to form from the bacteria laden inside of your colon into your abdominal cavity. That causes a small infection to form hence the fever/chills. Once the small hole forms, it's considered "complicated" 

How do they diagnose it? 

Symptoms, previous history, CT Scan with contrast (oral and often IV).  In a normal CT scan, the oral contrast should only light up your GI tract.  If the CT scan shows the oral contrast outside of the plumbing, you have a leak and you just won yourself a in-patient admission.   

How do they treat it in the hospital? 

Gut-rest. They put you on an IV for fluids and antibiotics.  No food or drink for several days.  They will slowly reintroduce you to liquids, soft foods, and finally close to regular foods.  Once you're tooting, it will eventually lead to pooping.  Once you're doing that normally without a fever or pain, you're on your way to low-fiber diet and plenty of advice on what NOT to ever eat again.  Seeds, popcorn, strawberries, or anything that has little hard to digest things.  Also, a whole lot of conflicting information.

How do they fix it? 

For uncomplicated diverticulitis, you just have some pain but you never end up with a leaky colon.  They just have you watch your diet to avoid things that causes flare ups.  If you have a flare-up, go gut-rest at home. You will feel miserable so its not hard to avoid food. 

For complicated diverticulitis cases, you will end up speaking at some point with a surgeon eventually to consider removing the problematic section of piping.  I held off on this for about 6 years and 2 hospitalizations before I went that route.  I did NOT do enough homework, and opted for a local community hospital and a general surgeon.  This was my mistake.  I ended up being part of the 5% of complication rate for this surgeon.  I can cover the complications in subsequent posts. It kicked off a cascade of surgeries.  😕  

Benefit - I haven't had a recurrent case of diverticulitis since the problematic section was removed. Everything is back to normal plumbing wise in less than a year.  I'm almost back to normal health wise from the complications.  

Caution - Don't think just because it's lapro and the community hospital recommends the general surgeon that's the recommended course.  THIS IS MAJOR SURGERY.  Treat it as such and seek a 2nd opinion preferably at a larger big city hospital with a specialist GI surgeon. If your insurance will cover it, you're better off going to the specialist. Even if it ends up routine with no issues. 

Exception - If you're really blown a hole open - you may not have a choice on going to surgery or not.  If you're leaking into your abdominal cavity from your colon AND you're not responding to the antibotics, they're going to recommend a surgical intervention.  In that case, roll the dice with your local hospital, you're probably feeling like crap and will go with the flow just to make the pain go away.   

[BeamerBikes]

Adding

Risk Factors - Age (usually strikes after 50), being overweight, western processed food diet/sometimes heard it's more prone to Northern European decent (could be diet), 

I had it at in my 30s.  It's considered rare to strike that age.  One of the veteran night nurses, who was one of my cheerleaders/protectors, pointed out that usually she would see it strike guys in their 30s/40s with high stress jobs/family life. I dunno if the data supports that.  Stress is usually one of the harder data points to collect.  I'm inclined to believe her though.  1) Nurses spend more time with patients than doctors and tend to get to know them better 2) "I have old man problems in my life, only makes sense I get old man diseases" - I told that to a doc - he wasn't amused.  

[samhexum]

I had diverticulosis in my 20s.  Never changed my diet, and have had mild to moderate digestive problems at times.

[+ sync]

I had heard of diverticulitis from a peer when I was in my twenties, but I was never made aware of it being a precursor of so many dire complications.

Good news that you have made it back to almost normal health after such an ordeal.

[BeamerBikes]

1 hour ago, sync said:

being a precursor of so many dire complications

The surgical complications came from a rare but severe drug side effect.  It's a commonly used stepdown non-Opoid painkiller and it's rare to the point that most surgeons miss it being the root cause of surgical recovery complications.  

The drug Toradol in me caused the surgical connections not to heal and caused additional leaks.  First with the plumbing, then in subsequent surgeries with bleeding.  It took a surgical team that had the confidence in their work to know something changed after they did their work to find it.  Last hernia surgery, we avoided the drug and no complications occurred.    Works great for most people, but I guess I'm the special snowflake that causes clotting issues. 

[+ sync]

6 minutes ago, BeamerBikes said:

The surgical complications came from a rare but severe drug side effect.  It's a commonly used stepdown non-Opoid painkiller and it's rare to the point that most surgeons miss it being the root cause of surgical recovery complications.  

The drug Toradol in me caused the surgical connections not to heal and caused additional leaks.  First with the plumbing, then in subsequent surgeries with bleeding.  It took a surgical team that had the confidence in their work to know something changed after they did their work to find it.  Last hernia surgery, we avoided the drug and no complications occurred.    Works great for most people, but I guess I'm the special snowflake that causes clotting issues. 

You must have an enviable constitution to have come through all that.  👍

[BeamerBikes]

Thanks, I want to be clear that once you are talking surgery if you have the chance do your homework and seek out a specialist.  90% no issues.  I just fell into the 10% complication rate that kicked off another surgery then a reversal surgery.  

Those 3 surgeries and a little weight set me up for incisional hernias and their repairs.  

Definitely consider it major surgery and find a specialist in it. 

[Guest]

13 hours ago, BeamerBikes said:

... plenty of advice on what NOT to ever eat again.  Seeds, popcorn, strawberries, or anything that has little hard to digest things...

Although this is a fairly common misconception, there is no evidence that dietary factors are causative in diverticulitis--in particular the old seeds and nuts myth:

https://pubmed.ncbi.nlm.nih.gov/19607778/

"... No direct evidence establishes a role for fiber in preventing recurrent diverticulitis, however. No evidence supports the common advice to avoid nuts and seeds to prevent diverticulitis. Eating nuts, corn, and popcorn does not increase the risk; in fact, nuts and popcorn may have a protective effect..."

https://pubmed.ncbi.nlm.nih.gov/21447765/

"...Historically, low-residue diets have been recommended for diverticulosis because of a concern that indigestible nuts, seeds, corn, and popcorn could enter, block, or irritate a diverticulum and result in diverticulitis and possibly increase the risk of perforation. To date, there is no evidence supporting such a practice..."

https://www.jandonline.org/article/S0002-8223(08)01843-9/fulltext

"...In this recent study it was noted that nut, corn, and popcorn consumption was not associated with an increase risk of complicated diverticular disease. Instead the researchers observed inverse relationships between nut and popcorn consumption and the risk of diverticulitis.."

https://pubmed.ncbi.nlm.nih.gov/18728264/

"...During 18 years of follow-up, there were 801 incident cases of diverticulitis and 383 incident cases of diverticular bleeding. We found inverse associations between nut and popcorn consumption and the risk of diverticulitis. The multivariate hazard ratios for men with the highest intake of each food (at least twice per week) compared with men with the lowest intake (less than once per month) were 0.80 (95% confidence interval, 0.63-1.01; P for trend = .04) for nuts and 0.72 (95% confidence interval, 0.56-0.92; P for trend = .007) for popcorn. No associations were seen between corn consumption and diverticulitis or between nut, corn, or popcorn consumption and diverticular bleeding or uncomplicated diverticulosis..."

[Guest]

11 hours ago, samhexum said:

I had diverticulosis in my 20s.  Never changed my diet, and have had mild to moderate digestive problems at times.

Unlike diverticulitis, there is no evidence that diverticulosis causes any symptoms (barring complications, of course, such as bleeding or diverticulitis). 

[BeamerBikes]

1 hour ago, Unicorn said:

Although this is a fairly common misconception, there is no evidence that dietary factors are causative in diverticulitis--in particular the old seeds and nuts myth:

https://pubmed.ncbi.nlm.nih.gov/19607778/

"... No direct evidence establishes a role for fiber in preventing recurrent diverticulitis, however. No evidence supports the common advice to avoid nuts and seeds to prevent diverticulitis. Eating nuts, corn, and popcorn does not increase the risk; in fact, nuts and popcorn may have a protective effect..."

https://pubmed.ncbi.nlm.nih.gov/21447765/

"...Historically, low-residue diets have been recommended for diverticulosis because of a concern that indigestible nuts, seeds, corn, and popcorn could enter, block, or irritate a diverticulum and result in diverticulitis and possibly increase the risk of perforation. To date, there is no evidence supporting such a practice..."

https://www.jandonline.org/article/S0002-8223(08)01843-9/fulltext

"...In this recent study it was noted that nut, corn, and popcorn consumption was not associated with an increase risk of complicated diverticular disease. Instead the researchers observed inverse relationships between nut and popcorn consumption and the risk of diverticulitis.."

https://pubmed.ncbi.nlm.nih.gov/18728264/

"...During 18 years of follow-up, there were 801 incident cases of diverticulitis and 383 incident cases of diverticular bleeding. We found inverse associations between nut and popcorn consumption and the risk of diverticulitis. The multivariate hazard ratios for men with the highest intake of each food (at least twice per week) compared with men with the lowest intake (less than once per month) were 0.80 (95% confidence interval, 0.63-1.01; P for trend = .04) for nuts and 0.72 (95% confidence interval, 0.56-0.92; P for trend = .007) for popcorn. No associations were seen between corn consumption and diverticulitis or between nut, corn, or popcorn consumption and diverticular bleeding or uncomplicated diverticulosis..."

Yeah, I should have been more clear.  Plenty of advice (which may or may not be accurate).  I've gotten tired of trying to correct folks with their advice based on the data.   What is clear?  When you're feeling crummy, it's definitely time to stick with foods you know don't cause you issues.  

I managed to put off the surgery for several years by managing it with diet.  Finally called it after the last hospitalization in 2017. 

[Guest]

3 hours ago, BeamerBikes said:

...I managed to put off the surgery for several years by managing it with diet....

My point is that while it may be comforting to think one can control this problem with diet, science cannot find any link between diverticulitis and diet. This includes the JAMA. 2008 Aug 27;300(8):907-14. doi: 10.1001/jama.300.8.907. study above, which followed 47,228 men aged 40 to 75 years for almost 2 decades....I must confess that I too used to suggest the low nut/berry diet until that study came out. It was common (albeit unproven) advice at the time. We know better now. Unfortunately, while there have been associations, there are no links so far which have shown a dietary correlation. If anything, there was a trend for nuts and popcorn to lower the risk. 

As you can imagine, these huge, decades-long studies are difficult and expensive to perform. We might as well learn from the knowledge the studies give us. 

Edited March 2, 2022 by Unicorn

[BeamerBikes]

1 hour ago, Unicorn said:

My point is that while it may be comforting to think one can control this problem with diet,

I felt I only held off the inevitable surgery. I still had flare-ups, and during those flare-ups, I'd go back to safe foods and gut rest.  It seemed to work for me to keep me out of the hospital most of the time. 

Essentially, I wasn't going to poke the bear when he was already angry.   Either way, the point is hopefully moot for me for several more decades maybe rest of my life.  

The 1st part of the journey was lapro partial colonectomy, then open surgery for a diverting loop ileostomy, a balloon expansion for a constriction at the reconnection site(worst butt play ever), followed by the ostomy takedown.  

2nd part of the journey has been incisional hernia repair, redo of the hernia repair thanks to infection from Toradol bleeding, and now waiting for another hernia repair. Oy...   

6 surgeries and still don't have a GD 6 pack out of the deal.  0 stars. 

 

[Beancounter]

18 hours ago, Unicorn said:

Unlike diverticulitis, there is no evidence that diverticulosis causes any symptoms (barring complications, of course, such as bleeding or diverticulitis). 

What is the primary difference between diverticulitis and diverticulosis?  

[Guest]

5 hours ago, Beancounter said:

What is the primary difference between diverticulitis and diverticulosis?  

Diverticulosis:

Diverticulitis:

I would clarify the first slide in that diverticulosis ONLY causes symptoms when there are complications (infection, bleeding). Also, diverticulitis is rarely diagnosed with colonoscopy (in fact, one would usually avoid colonoscopy if one suspects diverticulitis), but rather with CT or other imaging modalities. 

Edited March 2, 2022 by Unicorn

[BeamerBikes]

Oof. I don't miss reviewing/viewing my insides and the pathology with the docs.  Forgot how comfortable I was with it at one time.  

I adjusted to the ostomy life for 6 months while things healed up. Even traveled internationally with it. Amazing how you can adjust to new realities. The sex life definitely dried up though because that was one area I wasn't ready to have conversations about. 

[Guest]

2 hours ago, BeamerBikes said:

... I adjusted to the ostomy life for 6 months while things healed up. Even traveled internationally with it. Amazing how you can adjust to new realities. The sex life definitely dried up ...

I remember a patient who had an irritated stoma, and the culture grew out gonorrhea.... 😏

[BeamerBikes]

So fishing for feedback...  Anyone find the content/discussion helpful?  

I can write up another thread on the abdominal wall reconstruction/advanced hernia repair that's hopefully the last part of this journey.  

[Luv2play]

On 3/2/2022 at 10:25 PM, BeamerBikes said:

So fishing for feedback...  Anyone find the content/discussion helpful?  

I can write up another thread on the abdominal wall reconstruction/advanced hernia repair that's hopefully the last part of this journey.  

I found your discussion of your experience very educational as it is a disease I was mostly unfamiliar with since noone in my immediate circle has suffered from it.

My late mother developed it very late in her terminal illness but at that time it just seemed to be another aggravation in her condition and didn't kill her in the end.

The diagrams and explanations of Unicorn were also very illuminating if not a bit scary (illustrations mostly).

Your attitude throughout is to be commended, not a hint of self pity. Congratulations.

[BeamerBikes]

8 hours ago, Luv2play said:

Your attitude throughout is to be commended, not a hint of self pity. Congratulations.

I omitted this bit... After the initial surgery and subsequent complications, my mom whom I was her primary long term caregiver passed.  After 12 years on caregiving duty, she didn't die on my watch. I was hoping to make the funeral at least. The day before I was due to be released, one of my surgical drains turned cloudy with a bit of food residue present. My heart dropped. I knew what it meant. I was headed back for emergency surgery to get an ostomy which may or may not end up reversible. 

I'll admit the diverting loop ileostomy news was rough to hear.  I knew the stakes though. My digestive system was leaking bacteria into my abdomen and if not fixed, it will kill me. I'd miss my mom's funeral, but that's the breaks. She's dead, I'm still alive. I did the heavy lifting when it counted the most. Just gotta pick up the pieces and get on with it.  

Long story short, always seek out the best  specialist if time permits. 

[Luv2play]

2 minutes ago, BeamerBikes said:

I omitted this bit... After the initial surgery and subsequent complications, my mom whom I was her primary long term caregiver passed.  After 12 years on caregiving duty, she didn't die on my watch. I was hoping to make the funeral at least. The day before I was due to be released, one of my surgical drains turned cloudy with a bit of food residue present. My heart dropped. I knew what it meant. I was headed back for emergency surgery to get an ostomy which may or may not end up reversible. 

I'll admit the diverting loop ileostomy news was rough to hear.  I knew the stakes though. My digestive system was leaking bacteria into my abdomen and if not fixed, it will kill me. I'd miss my mom's funeral, but that's the breaks. She's dead, I'm still alive. I did the heavy lifting when it counted the most. Just gotta pick up the pieces and get on with it.  

Long story short, always seek out the best  specialist if time permits. 

Your mom would have understood. Funerals are for the living, not the dead. While helpful in aiding the grieving process, we all find our own ways to remember and cherish the memories.

[Rudynate]

Diverticulosis is very common.  Just about all of my friends have been told that they have it and have been told to avoid nuts and seeds.  Most ignore the advice and nothing happens.  I had a sigmoidoscopy when I turned 50 and the nurse practitioner said I had diverticulosis.  Also advised to avoid nuts and seeds, which I didn't do. 

I have had two colonoscopies and the reports from these didn't say a word about diverticulosis.  As a matter of fact, the second colonoscopy was occasioned by the first, which showed a few of the bad kind of polyp, which the doc removed.   The second didn't show any new polyps and no other disease.

My oldest brother has been hospitalized twice for diverticulitis. None of my other sibs has mentioned it.