Living with diverticulitis

I don't have great wisdom to share. Greatly appreciate everyone sharing their experiences with diverticulitis. My dr thinks I may have the 'smoldering' kind of the illness, in which there's thought to be a chronic inflammation and (mostly?) subclinical manifestations. I've never had the intense pain; mine has been low grade, which causes me to wonder if I actually had/have the illness, but it was twice confirmed with ct scans. I've gotten a variety of dietary advice (from an internist, a gi group, and nurse practitioners) - and if in fact there are different kinds of diverticulitis, maybe it makes sense that there isn't one-size-fits-all dietary advice. I wish I had good answers about how to keep the illness at bay. I do know that my gut is happiest if I eat modestly - meaning small meals. I've greatly increased my daily intake of liquids, and my docs are keen on psyllium (Metamucil), so I take that twice a day. None have expressed any worries about Tylenol. They do say to stay away from Ibuprofen.

Sure seems that the digestive tract is as complicated as the brain, and we don't know a whole lot about either. I asked my internist for recommendations for the gi docs in town who love to treat diverticulitis, and she said there were none. Because, she said, drs think the illness is "boring."

It's so helpful to hear other people's experiences. For myself--- I try to avoid fiber. When I have a flare-up, I go on a liquid diet--- broth, water, tea, clear apple juice the second day. Then onto the bland, white low-residue diet. Luckily I like all the foods that are on it. I've always preferred Wonder White Bread to any Grain Bread so I guess I'm lucky in that regard.
Some doctors have told me that seeds, popcorn, etc. are alright. But a Nurse who has divertic. assured me that they're NOT. And I've heard the same thing from several other people.
I'm careful to avoid constipation and Ibuprofen, since that's what landed me in the hospital last year for 10 days with my first very painful attack. I didn't have surgery and I'm hoping that I'll never need it. So I'm handling it as best as I can. And I drink plenty of water all day long. And Green Tea. The thought of having surgery has me terrified.

It's so helpful to hear other people's experiences. For myself--- I try to avoid fiber. When I have a flare-up, I go on a liquid diet--- broth, water, tea, clear apple juice the second day. Then onto the bland, white low-residue diet. Luckily I like all the foods that are on it. I've always preferred Wonder White Bread to any Grain Bread so I guess I'm lucky in that regard.
Some doctors have told me that seeds, popcorn, etc. are alright. But a Nurse who has divertic. assured me that they're NOT. And I've heard the same thing from several other people.
I'm careful to avoid constipation and Ibuprofen, since that's what landed me in the hospital last year for 10 days with my first very painful attack. I didn't have surgery and I'm hoping that I'll never need it. So I'm handling it as best as I can. And I drink plenty of water all day long. And Green Tea. The thought of having surgery has me terrified.

Hi @learningtime - glad that it's helpful to hear others' experiences. Thanks for sharing yours and what helps you day-to-day and when you have a flare-up.

Sorry to hear you've gotten conflicting input on eating items such as seeds and popcorn.

Medical advice about the details of your particular condition and whether you should ever consider surgery should come from your primary care doctor or gastroenterologist/GI surgeon. Mayo Clinic Connect members can share their experience but not provide medical advice.

You mentioned the thought of surgery has you terrified. Do you know if you are considered a potential surgical candidate in the future? When you were in the hospital or afterward, did you get to ask one of your doctors about whether they foresaw surgery for you at any point?

@lisalucier I spoke to my doctor constantly for the 10 days I was in the hospital. I don't think I'm a good candidate for surgery, due to my age and my fear. The doctor advised me that I would have to be extremely careful in the future if it was my intention to avoid surgery-- which it is. He told me to avoid constipation, which caused my perforation in the first place. So I'm careful to monitor everything. I watch everything I eat, and keep a journal every day. If I feel that my symptoms are returning, I immediately go on a liquid diet. Water, broth, tea, etc. Then I go on the Low Residue (white) diet. Bed rest and a heating pad for pain (which so far has been minimal) ... no ibuprofen! This seems to be helping and so far, so good. I'm interested to see how other people are handling this.

@lisalucier I spoke to my doctor constantly for the 10 days I was in the hospital. I don't think I'm a good candidate for surgery, due to my age and my fear. The doctor advised me that I would have to be extremely careful in the future if it was my intention to avoid surgery-- which it is. He told me to avoid constipation, which caused my perforation in the first place. So I'm careful to monitor everything. I watch everything I eat, and keep a journal every day. If I feel that my symptoms are returning, I immediately go on a liquid diet. Water, broth, tea, etc. Then I go on the Low Residue (white) diet. Bed rest and a heating pad for pain (which so far has been minimal) ... no ibuprofen! This seems to be helping and so far, so good. I'm interested to see how other people are handling this.

@learningtim: sharing my journey. I was 67 ( I am female) when I had my first flare up and hospitalization. I was told I needed a colonoscopy within 3 months. I was So fortunate to have a gastro surgeon perform that because I was still sick and the doctor performing it immediately told me I was still quite inflamed. He also told me if I wanted to consider elective surgery to contact his office. I was terrified at the idea. I too thought I could keep it at bay with diet etc. I too journaled everything. What I ate, my pain, my bowel movements etc. I delayed any surgery decisions. Well fast forward and almost 3 years past the first episode. I continued to have flare ups. My surgeon was very clear that I could treat each flare up. And based on my disease he saw I had a 95% chance that I would have more. And diet changes would not going to help. He also said I could choose to just keep treating each episode. Ie antibiotics. Maybe hospitalizations etc. And surgery would be a quality of life decision. I was finding myself so sick on the antibiotics with each of the 6 flare ups over those 3 years and constant anxiety and fear I decided to have the surgery. ( also after trying hypnotherapy and a naturopath because I was still hoping to keep it at bay. But it didn’t work. I also asked him if this was his mother with this case like mine, what would he tell her? Without hesitation he said I would tell her to have the surgery! 😀 I am 3 months post surgery and have no regrets. Recovery was a bit longer / harder than I expected but I am really doing well now. So worth it. And I was lucky to get the amazing and kind surgeon that I got. It was done robotically and laparoscopic. I empathize with you. It is all terrifying. But if you can find a good surgeon who will take the time to review your case / condition of your disease, It will help dramatically on how you might proceed. Good luck

Which I think is a cop-out. Not boring, but very difficult to treat.

@learningtime you are right, once you have the episodes, eating carefully is key…corn and popcorn should be avoided ! Hard to believe some of the things docs say…also, anyone with gut issues really shouldn’t mess with ibuprofen…it can even cause ER visits if used improperly ! Limited diet doesn’t feel limited if it helps healing ! Hope you can avoid surgery !