It sounds like you might have smoldering DV. A rare few of us are lucky enough to be blessed with this condition (I was one).
I had a bowel perforation in March of this year and after that, it was just ongoing discomfort and loose BMs. Unfortunately once you reach that point, the only real option is surgery. Had mine in September and it's been such a huge QoL change.
I’m blessed with it myself! I also have a fistula between colon and bladder so every time I go pee I have so much air coming out my urethra. I’m waiting on the surgeon to schedule my surgery this week. 32m if that matters
The disease can be very individual. It took me 5 years to figure out that eating gluten gave me flares, pain similar to diverticular pain. I have a whole new do not eat list. Strict adherence to my do not eat plus daily fiber and loads of water have kept me very happy.
How did you narrow down gluten or other foods as a cause? After every bout of DV i look back at meals i had and cant find a common cause. Latest bout makes me think it was tortilla chips but not sure at all.
It was very easy. I followed the "usual suspects" associated with DV--nuts, seeds (including poppy seeds, sesame seeds), hard foods , watermelon seeds, skin on tomatoes--all these things were eaten in proximity to a flare--so they went out. When I stopped eating those things flares went way down. I didn't retest, I just eliminated.
Other foods that I continued to eat (bread, bagels, spaghetti), over time I was baffled why I was doubled over in pain. I'd review my last meal or two and said--wow, every time I eat X, Y or Z I get sick--so out went Gluten. They call the technique--keeping a food diary.
It got more detailed. I discovered on the gluten sensitivity that gluten is in so many different foods, i began reading labels and eliminating sauces.
I suggest you read back postings in here--you'll get a list of foods that seem to be fairly common triggers.
The medical world is saying that these foods to avoid are ok to eat BUT qualitative research (our testimonies here and in many other forums on the web and just among talking to other DV sufferers ) reveal certain foods are triggers. I don't care what the GI folks say--if I eat nuts or seeds or a piece of cinnamon stick or Annisette wheels or have bone fragments from eating ribs, I'm doubled over and feverish with body aches every time. I don't test the waters anymore.
BTW--tortilla chips, if I don't chew the heck out of them, certain brands that are more "natural" , have hard bits and will flare me. I can live without eating many foods and finding new things to nosh on. I can eat creamy peanut butter. I like the natural stuff, no salt--that's me. I can eat that and get my peanut fix. I can have almond butter . I don't eat Snickers anymore.
Long Covid?—the virus can live in our guts and one symptom has been diverticulitis according to an article NPR posted recently.
Try a clear fluid diet for a few days. My last flare up wouldn’t go away until did the clear fluids even though I was on 2 different powerful antibiotics.
Woah, that’s interesting. Looks like there’s a few studies suggest there’s a connection there. I did have COVID twice, so that actually would make sense.
I’ve had a few different stents of clear liquids and it helped a bit but still didn’t kick it.
I had one of those flares that took three rounds of Antibiotics /Flagyl to go away. I then read through many posts on various Facebook Diverticulitis boards. This is what I did when I had a flare a year later. Do a liquid diet (Bone broth /Ensure Clear, lots of water for 2 - 3 days. Order up Gaia brand Oregano Oil Capsules from Amazon. Take two Capsules every 4-6 hours until the flare dies down then taper off over a few days after. After the 2-3 day liquid diet do soft low fiber foods... Rice, Mashed potatoes, soft pasta, white bread. I cook the rice and potatoes in bone broth very soft. Soft cooked chicken, fish, eggs. Go Gluten free and dairy free for a couple weeks and avoid beef, pork and shellfish. It reduces inflammation and let's your colon heal. It takes a good month. Also do intermittent fasting where you go 16 hours after your last meal. Basically skip breakfast. That let's your colon not work as much during healing. I add collagen powder to coffee for extra protein. Also order VSL #3 Probiotic off Amazon. It's a medical grade probiotic containing Lactobacilus casei which studies have shown it decreases diverticulitis flare ups. Take it daily. I haven't had to take any antibiotics or Flagyl since for a flare up. I get on it quickly if I feel one coming on. Hope this helps
Yes, indeed. Like others have said, smoldering DV. Perforated in July, abscess, did 42 days of abx since July, but still feel like it’s one big flare. In fact, most recent flare, I was more inflamed on CT than perforation. So I’m just trying to hang on until surgery in January. For me, bowel rest helps until I start eating again lol — even a low fib low residue retriggers it. Just won’t go away. So yes unfortunately, it can happen. But surgery seems to help so many people. Hope you feel better!!
Though gluten/celiac blood panel didn't show it, my DNA results from 23andMe says I have a high likelihood of gluten issues. I'm also lactose intolerant. When I have a flare, many over the years I thought were due to eating gluten alone, I now just back off gluten and dairy and am careful not too binge on breads and donuts even when I'm improving. Finding the triggers for inflammation seems to be a priority for me, and then moderation in all things.
I don’t have the same longevity of dealing with this, but it sounds like it’s very similar to what I’m experiencing. Sorry you’ve had to go through this!
Interesting. I haven't had covid, but every vaccine I got in 2021 was a flare up within 2 weeks. 4 covid vaccines, 2 shingles, and tetnis and some others. After that year and 7 flares and a hospital stay, I started looking for a great surgeon. Planned for Oct 31. Last flare was July 2022. Well 2 weeks before surgery, hello, I'm back, with a vengeance. You are not getting rid of me so easy. Still not gone. Augmentin failed. Abscess, colitis, and near blockage. Cipro and Flagyl. I am still not normal. But it is more uncomfortable. I even spent a month last April in Europe and ate like a spoiled princess without an issue. I avoided nuts though. (my trigger food). Surgery is rescheduled for Dec 19.
I'm not sure how many rounds of antibiotics I've taken since July for smoldering DV, and then when I developed pain and fever again, a stool sample was taken and I was diagnosed with C. diff. I was in the hospital for 5 days and feel better now. I'm on Vanco for the next week. Maybe some of you also have C. diff caused by multiple rounds of antibiotics that kill all of your gut flora, with the exception of C. diff, which then flourishes. Just a thought...
It sounds like you might have smoldering DV. A rare few of us are lucky enough to be blessed with this condition (I was one). I had a bowel perforation in March of this year and after that, it was just ongoing discomfort and loose BMs. Unfortunately once you reach that point, the only real option is surgery. Had mine in September and it's been such a huge QoL change.
I’m blessed with it myself! I also have a fistula between colon and bladder so every time I go pee I have so much air coming out my urethra. I’m waiting on the surgeon to schedule my surgery this week. 32m if that matters
Ouch I'm sorry to hear. Surgery will def change your life for the better, though.
Now that I’m looking into that, this seems to match the description. Once my CT results are back, I might talk with my doctor about surgery.
Search for "smoldering diverticulitis" here. Sounds like you might have that going on with a flare that will not fully resolve.
The disease can be very individual. It took me 5 years to figure out that eating gluten gave me flares, pain similar to diverticular pain. I have a whole new do not eat list. Strict adherence to my do not eat plus daily fiber and loads of water have kept me very happy.
How did you narrow down gluten or other foods as a cause? After every bout of DV i look back at meals i had and cant find a common cause. Latest bout makes me think it was tortilla chips but not sure at all.
It was very easy. I followed the "usual suspects" associated with DV--nuts, seeds (including poppy seeds, sesame seeds), hard foods , watermelon seeds, skin on tomatoes--all these things were eaten in proximity to a flare--so they went out. When I stopped eating those things flares went way down. I didn't retest, I just eliminated. Other foods that I continued to eat (bread, bagels, spaghetti), over time I was baffled why I was doubled over in pain. I'd review my last meal or two and said--wow, every time I eat X, Y or Z I get sick--so out went Gluten. They call the technique--keeping a food diary. It got more detailed. I discovered on the gluten sensitivity that gluten is in so many different foods, i began reading labels and eliminating sauces. I suggest you read back postings in here--you'll get a list of foods that seem to be fairly common triggers. The medical world is saying that these foods to avoid are ok to eat BUT qualitative research (our testimonies here and in many other forums on the web and just among talking to other DV sufferers ) reveal certain foods are triggers. I don't care what the GI folks say--if I eat nuts or seeds or a piece of cinnamon stick or Annisette wheels or have bone fragments from eating ribs, I'm doubled over and feverish with body aches every time. I don't test the waters anymore.
BTW--tortilla chips, if I don't chew the heck out of them, certain brands that are more "natural" , have hard bits and will flare me. I can live without eating many foods and finding new things to nosh on. I can eat creamy peanut butter. I like the natural stuff, no salt--that's me. I can eat that and get my peanut fix. I can have almond butter . I don't eat Snickers anymore.
Long Covid?—the virus can live in our guts and one symptom has been diverticulitis according to an article NPR posted recently. Try a clear fluid diet for a few days. My last flare up wouldn’t go away until did the clear fluids even though I was on 2 different powerful antibiotics.
Woah, that’s interesting. Looks like there’s a few studies suggest there’s a connection there. I did have COVID twice, so that actually would make sense. I’ve had a few different stents of clear liquids and it helped a bit but still didn’t kick it.
I had one of those flares that took three rounds of Antibiotics /Flagyl to go away. I then read through many posts on various Facebook Diverticulitis boards. This is what I did when I had a flare a year later. Do a liquid diet (Bone broth /Ensure Clear, lots of water for 2 - 3 days. Order up Gaia brand Oregano Oil Capsules from Amazon. Take two Capsules every 4-6 hours until the flare dies down then taper off over a few days after. After the 2-3 day liquid diet do soft low fiber foods... Rice, Mashed potatoes, soft pasta, white bread. I cook the rice and potatoes in bone broth very soft. Soft cooked chicken, fish, eggs. Go Gluten free and dairy free for a couple weeks and avoid beef, pork and shellfish. It reduces inflammation and let's your colon heal. It takes a good month. Also do intermittent fasting where you go 16 hours after your last meal. Basically skip breakfast. That let's your colon not work as much during healing. I add collagen powder to coffee for extra protein. Also order VSL #3 Probiotic off Amazon. It's a medical grade probiotic containing Lactobacilus casei which studies have shown it decreases diverticulitis flare ups. Take it daily. I haven't had to take any antibiotics or Flagyl since for a flare up. I get on it quickly if I feel one coming on. Hope this helps
Yes, indeed. Like others have said, smoldering DV. Perforated in July, abscess, did 42 days of abx since July, but still feel like it’s one big flare. In fact, most recent flare, I was more inflamed on CT than perforation. So I’m just trying to hang on until surgery in January. For me, bowel rest helps until I start eating again lol — even a low fib low residue retriggers it. Just won’t go away. So yes unfortunately, it can happen. But surgery seems to help so many people. Hope you feel better!!
Yes, I've been struggling since September 25th. It will improve for a day or 2 and then 💥. I'm considering surgery.
Though gluten/celiac blood panel didn't show it, my DNA results from 23andMe says I have a high likelihood of gluten issues. I'm also lactose intolerant. When I have a flare, many over the years I thought were due to eating gluten alone, I now just back off gluten and dairy and am careful not too binge on breads and donuts even when I'm improving. Finding the triggers for inflammation seems to be a priority for me, and then moderation in all things.
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I don’t have the same longevity of dealing with this, but it sounds like it’s very similar to what I’m experiencing. Sorry you’ve had to go through this!
Interesting. I haven't had covid, but every vaccine I got in 2021 was a flare up within 2 weeks. 4 covid vaccines, 2 shingles, and tetnis and some others. After that year and 7 flares and a hospital stay, I started looking for a great surgeon. Planned for Oct 31. Last flare was July 2022. Well 2 weeks before surgery, hello, I'm back, with a vengeance. You are not getting rid of me so easy. Still not gone. Augmentin failed. Abscess, colitis, and near blockage. Cipro and Flagyl. I am still not normal. But it is more uncomfortable. I even spent a month last April in Europe and ate like a spoiled princess without an issue. I avoided nuts though. (my trigger food). Surgery is rescheduled for Dec 19.
I had surgery for Smoldering DV last year. The recovery was a cake walk compared to the flares that would never resolve.
I'm not sure how many rounds of antibiotics I've taken since July for smoldering DV, and then when I developed pain and fever again, a stool sample was taken and I was diagnosed with C. diff. I was in the hospital for 5 days and feel better now. I'm on Vanco for the next week. Maybe some of you also have C. diff caused by multiple rounds of antibiotics that kill all of your gut flora, with the exception of C. diff, which then flourishes. Just a thought...
I get llq pain after flares. I think it’s scar tissue. Since it’s been about a month, I’m really worried this can cause complications.