I think diverticulitis is going to kill me

Oh no. My mother and husband have it. Doc told my mom that she’s no longer allowed to get colonoscopies. Apparently they aren’t allowed to eat seeds. I hope you are ok

I've had both diverticulosis and diverticulitis. The pain is nasty. I hope you have decent medical insurance. You will need to live out the remainder of your life being very careful what you eat. I don't need to tell you, I'm sure you already know what kind of diet you must follow. Yup, no seeds. Because one of my docs messed up and nicked my colon during a procedure, I went septic and ended up having that section of my damaged colon that was causing the diverticulosis, completely removed. This all set off a chain of events everyone fears. I had a poop bag for 4 months which allowed my colon to heal where it had been sectioned off. It really wasn't so bad. You get used to it and the idea that it will eventually be gone in a few months makes it bearable. These days I have a shiny new (mended) colon and I can eat anything I want. For that reason alone it was worth it to me. You'll be ok OP. Hang in there.

I can't even get to the point of a physician taking me seriously. I got my diagnosis and the GI docs all have appointments booked 6 months or more out.

I'm at the stage now where sometimes I seriously just wish I could take a pill and go permanently to sleep. Ten years of fighting various GI ailments with no doctors being helpful. It's a lot.

The seeds thing is questionable - I've heard it's an issue but also heard it's not.

Dont blame the seeds. Or popcorn. Lets be honest, it's not one little thing, it's decades of bad food choices. When I changed my diet, it resolved on it's on. My advice is stop lying to yourself that it's just one little thing. It's not, it's a major diet change in what you are eating as well as losing some major weight.

Except it's not. I eat an almost entirely vegetarian diet - but have had complications from a gallbladder removal years ago that just keeps getting worse and worse.

I wish I could blame it on my diet, but seeing as though I eat three solid meals a WEEK, not a day, due to the pain........

Sorry, OP. Treatment for diverticulitis has changed drastically in the past few years.

Find out if your "pockets" are infected or only inflamed. Inflammation can be substantially reduced with medication, then the symptoms ease. It can take months. Antibiotics are useless to treat inflammation. GIs used to start patients on antibiotics immediately, but most did not have bacterial infections, only inflammation

If you have an infection, antibiotics first, then anti-inflammation meds. The ideal treatment is IV antibiotics for three days, then oral antibiotics for another thirty days. Most insurance does not cover this, however. Once the infection is cleared, Lasix works well to reduce inflammation in the colon and symptoms generally resolve.

R7 what meds did they have you on for inflammation? If you don't mind sharing

Can you still bottom?

R9 No.

No interest whatsoever.....

and if it gets any worse I'll probably be too prolapsed to try

R8 Started with Bumex, then switched to Lasix for the inflammation. I had been taking Advil and Aleve to reduce pain, but it turns out that was a bad idea. Two years later I take Lasix only as needed (especially after particularly high sodium consumption).

Be careful to avoid any drugs that cause constipation: opioids and antihistamines cause you to stop up. Also, NSAIDs can cause excessive bleeding of the "pockets," so use them sparingly.

BTW, my gastro doc had to advocate for me to be admitted to the hospital for the three days of IV antibiotics. Kaiser relented after a couple weeks. Within two months, after having finished the thirty days of oral antibiotics after the IV in the hospital, my symptoms were completely resolved.

I took Lasix daily for about five months. A follow-up colonoscopy showed no more infection or inflammation, and resulted in a downgraded diagnosis from diverticulitis to diverticulosis. The "pockets" are still there, but they are no longer inflamed nor infected.

TMI: I have to watch what I eat and when (high fiber, low residue foods)and take regular poos to lower the risk of recurrence. Good luck!

Thanks R12, I so appreciate the time you spent to write that (probably more than any doctor has spent with me in years).

OP, Did you know that one of the worst things you can eat is avocado?

R14 I did read that, and haven't had it in some time.

It's also on the FODMAP list, along with pears.

Me too. I can't eat pears, oranges, grapefruit, grapes, certain kinds of apples. I can eat Golden Delicious apples. No watermelon, popcorn, seeds, I have to avoid mucus producing foods. So no more than 4 ounces of milk a day, but I can eat 0% fat yogurt. Red meat also is mucus producing.Avoid sweets as much as possible, and avoid ice berg lettuce. I can eat mixed greens. Yeah, it's a very restrictive diet. No cottage cheese. So mostly fish and chicken, and certain kinds of beans. Lentils are good, cannellinis are good. No black beans. I do cheat with chili and pasta sauce using ground beef, but it's grass fed and very lean. No fried foods like French fries or fried chicken.No fast foods, or processed foods. I should weigh 90 lbs. but the carbs add weight.SoI'm overweight and I need to lose 35 lbs.

a friend of mine has this. she's fat but she drinks like a fish and smokes too.

Fat, drinks AND smokes? Are you on a suicide watch yet?

R16 here. I smoked for 30 years and stopped 17 years ago. I also drank three or four times a week. Socially, never more than two cocktails. Vodka and tequila were my choices. Ah, those were the days. My GI Doc told me no more alcohol so I stopped distilled alcohol in 1990. Not supposed to eat bacon but I manage two or three times a month. The scary thing is the polyps they keep finding. I have to get a colonoscopy every two years. The last time I also had an endoscopy and they found polyps in my throat too. Biopsied and everything was benign, but diet and exercise is really important. So is water. And getting enough fiber. It can be very discouraging and when the attacks come it is painful and harrowing because the spasms are intense. I have an anti spasm medication I take as needed and it has given me some freedom from anxiety. I was restricting myself based on my fear of getting sick while I was out.

OP, sorry to hear. People don't take GI issues seriously. I have had lifelong struggles with constipation and IBS-type stuff. It's no joke and can make you feel depressed.

I bet your poo stinks to high heavens.

But yours does not.

I can't eat solid food. I think that is ultimately not life sustainable.

R23 you can sustain. You just have to put most things in a blender. It sucks, but it's better than starving. Why can't you digest solid food?

I had a friend that lost 100 lbs on a totally liquid diet. You can in fact live without solid food.

I could never do it.I need to crunch on something.I need to chew.

If you dont have a choice. There are people every day who get their jaws wired shut from a fight or accident. They have to eat all their meals through a straw for months.

I can't think of a worse time of year to be sick with this.

R28, you're right, but the way I try to manage it is to stick to my regimen as much as possible, and only deviate from it on special occasions. That helps minimize the discomfort.

An alternative view -- diet restrictions only embolden diverticulitis.

Instead you should eat anything you want to toughen up your gut.

Who the boss? You or some pissant little protrusion of your colon?

I recommend starting this toughening up process by developing a fondness for fiery chili peppers. Seriously.

r30 Smart move - and to toughen up those lungs, start smoking unfiltered cigarettes all day. To toughen up those eyes, look directly into the sun numerous times a day. That'll teach 'em!

r31 This technique won't work on for lungs or eyes .. just diverticulosis. Dummy!

R32 the reason I developed Diverticulitis/and Diverticulosis is BECAUSE I ate any damned thing I wanted and discovered my GI tract could not tolerate certain foods.

On another note: I have found that when I follow my diet, drink enough water and exercise daily, my symptoms lessen. They don't go away, but the are minimized. I also take Dicyclomine an anti spasm medicine, as needed and it's a life saver. I use to restrict my outings and plan my activities around the possibilities of an attack,, and now I have these pills and if I take them as needed they really helps.

R33 am on Dicyclomine. Still having spasms, unfortunately.

can someone post the diet you're supposed to be on?

My friend told me she had to go to ER 3 times last year due to this. But it doesn't seem she's doing anything special for her condition. She smokes, drinks like a fish, eats whatever and is overweight. She stands on her feet all day (job) so that's her exercise....

R35 you just explained why your friend is having problems. Smoking, drinking, no exercise, overweight? ( standing is not exercise) ? Hunny she sounds like a mess.

That's awful, R34. Have you talked to your GI specialist? Also, and this might seem like a really dumb question:Have you checked the date on your prescription? Because since I only take them as needed,, one script (90 pills) can last for months and I remember anticipating an attack, and I popped one and nothing happened. I then realized the pills should have been discarded 67 months ago. They seem to lose potency faster than other meds.

I can't tell you what diet works. I can only tell you what I'm doing and it seems to help: I have been told by my doctor to avoid mucus producing foods, and it was definitely part of my problem seeing mucus in my hard as a rock stool. So I rarely ever eat red meat. While fruits aren't mucus-y they have too much sugar and that is rough on the colon. I cannot eat pears, watermelon, or grapes and strawberries are not too friendly. No processed meats or fatty foods. Fatty foods like bacon and spare ribs a are real bad, so is fast food. Ditch the french fries. 0% fat yogurt, but otherwise lactose intolerant if I have more than 1/2 cup of low fat milk. No sugary sweets or alcohol. Only romaine or mixed greens, no iceberg lettuce. Garlic is very gassy. I can't eat dried fruits like dried apricots which I used to love. I get deathly sick from them. Don't eat cabbage cooked or raw. No white Rice or White breads. Brown rice and whole grain multi grain bread. Cooked broccoli is my friend. I can eat brussel sprouts sparingly. Same with green beans and asparagus, but the asparagus is very tricky. Best to avoid. Oatmeal is fine. As for apples the only ones that I can really tolerate are Golden Delicious. Granny Smiths are...ok. fruit juices are off the menu. Try to check out an anti inflammatory diet because it may be helpful. Also I need fiber in my diet so certain beans. Funnily enough I can't tolerate black beans but Cannellinis and lentils are my BFFs. If you eat potatoes stick with sweet potatoes and red skins. I have to avoid caffeine too, so no coffee, but I can drink green tea. I mostly drink herbal teas. That's about all I can think of. Hope it helps.

It's a very frustrating medical condition, and you really need to have a good GI specialist and do some research to cope. Very depressing. It affects everything.

Right now this is my diet:

Eggs (small amount of scrambled eggs once every 3 days)

Grape juice

Apple juice

Ensure Clear

Broth

Occasional fruit smoothie

Been on that for two months now. Mentioned the pain and additional spasms to my doctor who seems unconcerned. Next appt is in March. As I said at OP, I don't see how I will survive from then until now.

I strongly suspect cancer that's appeared/grown since my colonoscopy about 9 months ago.

R40, ditch the Grape Juice or the apple juice. They contain a shit ton of sugar.It's bad for your colon. You're telling me you are eating hardly any fiber at all. Is that on purpose? Can you eat oatmeal ? Can you eat multi grain bread or maybe some brown rice? Do you get any protein besides eggs? How about canned tuna? Id gradually increase my fiber if it's not prohibited, and I would drink a glas of lemon water with Miralax. Miralax is not a laxative. My GI specialist recommended it because it helps your colon. Do you have a bloody stool? Did you have any polyps in your colon when you had your last colonoscopy? If you can digest the eggs you ought to be able to have toast and brown rice and try a small amount of roasted chicken with the broth. You can buy brown rice pasta and Whole Foods or order it on Amazon, I get Jovial. It's a reliable brand and you hardly notice the difference. Try some pasta with olive oil, no cheese, but maybe a small amount of dried oregano and a pinch of garlic powder for seasoning, but not tomato sauce. What you want is stuff easy to digest, but you also need some bulk, some fiber. Unless your doctor has you on low fiber. And IMO you may need to find a new GI Specialist because this one seems to not be aggressively treating you.

R41 all good suggestions but

I

CANNOT

EAT

SOLID

FUCKING

FOOD

in any way, shape or form.

I mean, I can. It will just hurt like hell until I shit it out.

time to go to the er

R41, You need to go to the ER and insist on a new GI specialist.

The main symptom seems to be pain after eating, is that right? Sometimes with fever and nausea?

Never with fever or nausea. Just pain at some point after eating. I only eat solid once every few days now and it still happens.

My husband has diverticulosis and also psoriasis. When he started taking Humira for the psoriasis, his symptoms greatly lessened and hasn't had a bout of diverticulitis since.

OP, I am truly sorry for your condition. My mother suffered from it as well, but was well and stayed well then for the rest of her long life. But I am equally prone to deeply sympathize because you say you are overweight and yet are not snarking and sniping and otherwise blowing up threads. Get better. I came to this site first 20 years ago because of a very troubling condition, got some good words from people here, and am doing better now.

Am going to the ER - either tomorrow morning or, if pain increases, tonight.

I've been reluctant to go because there hasn't been any of the pain, or vomiting, or chills that is usually said to be a part of diverticulitis. Most of my pain over the years has always been on the right.

But the left side has some pain (not intense or sharp, but pain and bloating nonetheless) and I would rather be safe than sorry, so am heading there. My GI didn't return a call from earlier in the week.

Cancelled a small holiday trip.....just a shitty week all around. But thanks everyone for your suggestions. I appreciate it.

Good luck OP As a fellow sufferer, I hope things improve for you. IMO when you go to the ER, lie. That's right, I said Lie. Tell them your appendix burst, and start moaning and screaming. I'm not joking. People get taken care of faster if they think it's life threatening and a burst appendix is life threatening. And it could be related to your appendix in point of fact. Now please do not tell me you already had your appendix out. Please don't. If you have already had it out, tell them it's your gall bladder. YOu think something burst.

my friend said the pain moved from one side to another...there is bacteria. you need antibiotics!

oof....tried to go to the hospital and was told they are on bypass....thanks covid

Will go to another town tomorrow AM to see if things are any better there

OP, that sucks. I'm sorry you're having such a difficult time. I don't know where you live, but no hospital ER is supposed to turn anyone away. But I think if you want attention from the ER, you have to aggressively demonstrate how sick you are.

Maybe urgent care.

Do you have a stand mixer?

R54 if he goes to urgent care they won't do anything. He needs specialized care and he will only get it in a hospital setting. Something is obstructing your ability to digest food properly. The comment above about the possibility of a bacterial infection that requires antibiotics is a good guess. That is a possibility. But if it is an infection it is secondary to the cause. Something else more basic is happening. I would be curious to know if the OP has ever been prescribed a course of Prednisone. It's a miracle drug and would definitely help with inflammation.

OP, one thing I have learned with my chronic GI problems. Those of us who are plagued with this condition have to push our doctors. Ask questions,e tc For me the first step was getting information. I was Googling and reading and educating myself about my condition and the kinds of treatments and medicines available. I was the one who discovered the anti spasm medication and asked my doctor if it would help. I got an instant prescription! It hadn't even crossed their minds until I raised it. We can't sit there and assume they will be pro active. We have to be pushy. Cataloguing symptoms and complaints about our condition is step one, but we have to also take step two which is to be informed so we can ask the questions and get the relief we deserve. A lot of doctors are just MIA. Sad to say.

What R57 said is true.

You have to be your own patient advocate these days. Don't expect someone else to do it for you. Your life depends on it. Don't be an ass, just be informed, ask questions, throw out ideas, ask what the other medical alternatives are (not holistic bs), ask what the success rate of their other patients are with what they are throwing at you. Ask if there is any new research in that area, and have them explain what they think about it.

It must be quite painful. At a company Holiday Party a few years ago, a colleague's wife was in such pain they left to go to the Emergency Room. Turned out to be Diverticulitis. I'm sorry you're suffering, OP.

OP, I hope you made it to the ER and they admitted you for tests. I hope things get better for you.

Give us an update OP. are you OK?

Can I have your stuff?

I did make it. They couldn't find anything. No obstructions that could be seen. No bile duct issues. Small but non blocking kidney stones (I knew about them). No infection, no diverticulitis.

They sent me home.

The PA kept suggesting my pain was kidney stone related but I shot that down. I had a colon spasm while I was there and had a BM not long after getting to the hotel (we went to another city, so stayed overnight there) and after not eating solids for several days I had a substantial BM this morning. So yes, something is either obstructing somewhere, or it's getting caught somewhere along the way and delayed.

I almost wish they had found something....I'm glad they didn't but damn, that would have been some kind of answer......

Could I offer you some nuts OP?

If you end up with a colectomy, I have a lot of advice on dealing with it.

VOTN, I know you're in the medical field....do you mean as a professional, or did you have one? (Hope that wasn't too personal. I appreciate you posting & may have questions, indeed.)

R63, go play in traffic. (Not OP)

Both professional (although I haven't done any kind of surgery since I was an intern) and personal. In 2022, I developed toxic megacolon which perforated, necessitating an emergency subtotal colectomy, which also resulted in me having to poop into a bag glued to my stomach for six months before I healed and got the two ends put back together.

And if you should need part of your colon removed, while a colostomy isn't pleasant, it's less extreme than the ileostomy I had. Depending on how extensive the diverticulous is, and if you're not inflamed when they operate, they might even be able to just anastomose the two ends without needing you to have 3-6 months of bowel rest.

Oh my gosh VoTN, that sounds awful. Curiosity on my part... how long ago and how is your diet now (very restrictive/) and how is the overall digestive system operating?

VoTN, I'm sorry you went through that.

It happened at the end of May of 2022. My surgery to put my insides back inside was in November last year. This summer, I had another surgery that was half cosmetic (to deal with the gigantic scar from the laparotomy as well as the loose skin from my weight loss, both in terms of fitness as well as the 40 lbs I lost when I got sick) and half to repair a hernia that was forming around the incision. About the first eight weeks after the initial surgery were the absolute worst; they couldn't close the incision because it was a dirty wound, so I essentially had daily nursing care coming to my house to change my dressings, and I was so out of it, I have no idea how I managed to still be there for my patients.

As far as now...well, I don't have a lot of colon left to...store...things so I depend on taking Imodium three times a day. I also have to not get too hydrated or or go overboard on caffeine because that makes stuff move quicker.

I'm alive. I almost wasn't. Beats the alternative.

Oh man, best with the ongoing recovery VoTN. Um, I googled, really didn't find an answer, what causes "toxic megacolon"?

Generally, it's caused by some kind of inflammatory bowel condition like ulcerative colitis or Crohn's. I have neither of those, but I did have a double whammy infection of Salmonella and Shigella that I probably picked up in Mexico. So it was basically a bad infection, and since they didn't really treat me appropriately, I ended up with the rupture.

How much total weight did you lose VOTN? And with all the surgery you’ve had are you eating smaller meals because you have a smaller colon and need to be careful?

Btw, sorry you went through all that. Life altering for sure…

R40 What do the spasms feel like? Are they similar to the poop spasms we’ve all experienced at one time or another, but more intense and more often?

I'm not R40, but I can't even describe how intense they can get. I've had times when I was going from both ends, the horrible spasms, the the emptying out, and vomiting from the pain at the same time.. Years ago, a GI doctor I had who has since retired, said I was allergic to certain foods. This was like 30 years ago. And of course dairy fucked me up too. That's when he diagnosed me as having acute mucus colitis. Put me on a bland diet.

VOTN, do you know anything about intestinal motility? Because my GI doctor once said I had a "lazy bowel?"

I didn't get a big dick, hairy chest or a ripping bod like I wanted, but at least I don't have this shit.

OP/R40 here.

I've had GI issues for some time. Earlier this year I was diagnosed with diverticulosis and gastritis. I don't remember ever having diverticulitis (no fever, etc.)

The colon spasms, or what I believe are colon spasms, started in the last few months. I was doing well for a few months and then issues started again in the fall.

No, this is not a stealth scat thread, but the last two "events" scared me. Both of them involve what I believe to be colon spasms. I seem to have these spasms most frequently after lying down and then getting back into a seated or standing position.

In November-ish, I had a week where I ate some minor solid food at breakfast but kept it light during the rest of the day (broth at lunch, juice in PM) - sort of intermittent fasting. But even after a week of that, and having several BMs during that week, I had a severe spasm (after sitting up in bed) and then, over the next 8 to 12 hours, had 4 or 5 BMs. And not just any....they were huge. I hadn't had any substantial intake of food so I was like, WTF? Where could this have come from?

Over this last week before my ER visit I'd actually had almost no food intake. 9 or 10 days prior I'd had a small amount of scrambled eggs, and a few days later, same at breakfast. But all other intake was solely liquid - mostly clear liquid but a few smoothie type (Bolthouse Farms) when my blood sugar dipped.

Had a few moderate BMs during that week. On Thursday, when I sat up from the CT scan, I had a spasm as I was being rolled in the wheelchair back to my little area in the ER. I had a BM about an hour later and then, a few hours after that, a very large BM again. And again....where the fuck did it come from? Very little intake for over a week.

So either there's a severe abnormality in the pathway that digestion and expression of feces is taking, or I have a blockage or tumor somewhere that's delaying this in what I think has to be a pretty dangerous way.

R67 I had very similar when I was 13. It practically killed me. Got put back together, so got rid of the colostomy. They removed (so I was told) 8 feet of small intestine. I think it reduced my digestive ability, both of my brothers are waaay taller and bigger than me, I'm small and skinny. The two doctors handling this got in a real fistfight with each other in the doctor's lounge over my treatment. One of them left the state not that many months after.

"Flat" polyps and diverticulosis. I'm having a right hemicolectomy in February.

Do colonics help with this problem?

OP, I have had similar experiences, where I have a Bm, then spasm ,and then something huge. I get it. This isn't the most appealing thing to discuss and we can't help but be graphic, although I will also try to try not to gross people out. I had a colonoscopy and afterwards, for about a month or two I was so normal it was a miracle. Then gradually, the old patterns reasserted. The stool was normal, and formed but I also had some that was impacted, rock hard that slowed things down. I was taking fiber supplements and probiotics for years. I stopped all of that. And the spasms lessened, but when they hit they were intense. I know now that certain fruits, and sweets sugar, etc.. was causing the rock hard stool. So I've ad to limit that. And the Miralax and the anti spasm medication helps. I'm not a medical expert, but it seems as if your GI tract is just rejecting certain kinds of foods. And even when we have what we think of as a normal BM, we aren't completing the job. So eventually the spasms hit to push everything out. I can almost predict when I'm going to have an attack just based on my output.

R82 I appreciate your post. I can relate to most of it.

Miralax seems to hurt me, which is a worry of mine. Both Miralax and the prep solution for the colonoscopy hurt, bad, in the same spot where the colon spasms happen.

I have diverticulosis, and my GI specialists are pretty uniformly adamant that the former received notion that it stems from "bad" foods (like seeds or nuts or popcorn) is flat-out wrong, even though people believed it for years and years.

People love the idea of "bad foods" and always want there to be quick fixes. The way to temper it is to eat a high-fiber diet and get exercise.

The seeds and popcorn stuff is an old wives tale. We were taught that as far back as our GI block pre-clinical.

My friend who has this condition is going on ozempic! She drinks like a fish. I wonder if she's gonna die....

Do you know Doug and Wendy Whiner?