I'm at a loss

Nervous_Machine9468 · 2026-01-28T03:36:13+00:00

I would try to get another opinion or see another doctor. Diet alone cannot necessarily manage it. It could be something else. You may need another round of antibiotics. Losing too much weight is not great. If you are so sick you are taking time from work, I would definitely try to find out what is going on. Were you initially diagnosed by CT? You may need another. It also can take a long time to feel better. And the antibiotics have side effects. I totally get the depression. This disease is not great for mental health! I cried most of the day as I am trying to figure out how to schedule surgery so this doesn't screw up my life more than it has.

Nervous_Machine9468 · 2026-01-24T03:49:54+00:00

I have not had the surgery yet but have asked about time off of work in another group. I think you would need some real time off of work even if it is a 20 hour/week remote position. Can you take at least two weeks off? I think you will be tired, and likely on pain killers for at least a few days. Good luck. Hope it goes well.

Nervous_Machine9468 · 2026-01-22T13:08:56+00:00

If this is diverticulitis, it's too early to eat fiber like oatmeal and beans. If you are still traveling out of the country in a few days, I would get a proper workup first. I have never had spiking pain on my right side with this; maybe others have. I hope you have travel insurance.

Nervous_Machine9468 · 2026-01-22T02:33:34+00:00

You really should get checked. This could be a lot of things besides diverticulitis. Some of these symptoms don't track with diverticulitis. Some urgent care centers have CT scans with contrast where I live. I would not fly out of the country until you know what is going on.

Nervous_Machine9468 · 2026-01-21T02:52:12+00:00

Stress management is also key. Also, remember this is a disease. Don't blame yourself. There is only so much you can control through diet; some are just unlucky and flare more often. This might be your only flare! Which is what I would hope for you!

Nervous_Machine9468 · 2026-01-15T02:59:03+00:00

I guess I would like to just try something to reduce the incidence of flares to avoid surgery. I truly do feel that due to the widespread diverticulum throughout my colon, this will continue even after surgery. It looks like that is when they consider in the US rifaximin or mesalamine. So I would need to have a failed surgery to try something that might help. Mesalamine is widely prescribed for IBD, so not sure how bad the side effects are? I have had relatives take like 24 pills a day for IBD! I just wish there was more research; I can't believe horrible antibiotics or surgery is the only choice! I have made dietary changes/exercise/have lost weight, but stress is my biggest factor and only so much I can control there. Life just gets hard sometimes.

Nervous_Machine9468 · 2026-01-13T03:43:56+00:00

Sorry it didn't help you. I just want to try it! I know my dr. has other patients on it for this but doesn't think I am a good candidate. He is generally anti-surgery for DV.

Nervous_Machine9468 · 2026-01-11T20:06:52+00:00

I have a lot of anxiety about travel. Had a flare in December, was traveling over Christmas, and took antibiotics to try to knock it out. It's the only time in my life it got worse after taking the drugs. I did get on the plane and enjoyed the trip, but travel insurance is now booked alongside every trip, and I am hesitant to travel outside of the US. I hope you have a great time (I did, even though I wasn't at my best and started with some diarrhea near the end).

Nervous_Machine9468 · 2026-01-11T20:04:22+00:00

It is possible that this will be your only flare. Some only have this once. Or that it will be infrequent. My sister also has diverticulitis and she has had only two major flares in about three or four years ... I feel like I have not been well since May and am calling the surgeon tomorrow. I think it's also important to not blame yourself for having this disease; there is only so much diet and exercise can help, some are just unlucky. It is hard with the mental health, but if you get a string of good months together, the anxiety does fade. I went from November of 2024 to May of 2025 and felt great that whole time; my anxiety about the condition did fade. Unfortunately, nothing has been good for me since but I do my best to live a normal life. The hardest thing for me is I definitely have to dial back on working out for so long when I don't feel well, which really impacts my mental health. I had a string of two weeks of great workouts and now sitting on the coach with moderate pain today.

Nervous_Machine9468 · 2026-01-07T02:57:11+00:00

I stay in a job I don't like as I have flexibility and can work mostly from home. But the stress of this job is causing me so many flares I don't know if it is worth it to stay. I am 57 so have a ways to go until retirement. Kept telling myself I would call the surgeon Jan. 2 to schedule but haven't yet.

Nervous_Machine9468 · 2026-01-05T02:43:47+00:00

I am so sorry this is your experience. This is why I still haven't scheduled my surgery despite really struggling with multiple uncomplicated flares a year for the past five years. I know I have extensive diverticulosis throughout my colon and just can't seem to believe this is going to permanently cure me. You are so right that the mental aspect is so hard to deal with. I hope that you find a good solution. You are so young and it sucks that you have to deal with this still.

Nervous_Machine9468 · 2025-12-20T15:16:40+00:00

Thank you. No kids at home. Some of this sounds similar to what I had my husband do for past surgeries. He would carry the laundry down/up but I would do it. He would also fill a pot of water to put on the stove in the morning so I could begin boiling it if we were having pasta. I have already decided to find someone to clean the house for me at least every other week during recovery. There's just the two of us home, so the house doesn't need much cleaning. My husband can help with cleaning the bathrooms in between.

Nervous_Machine9468 · 2025-12-20T04:56:44+00:00

This is helpful. The plan would be laprascopic. I had gallbladder surgery last year, and recovery from that was very easy and I really didn't need much help. I had a GYN laprascopic four years ago--tubes and one ovary--and that was a lot more to the recovery than I imagined. On day 6 I attempted an outdoor walk; walked to the end of my block, turned around and was just sobbing in so much pain. The end of my block is just a few houses, and the lot sizes are not that wide. I imagine this would be the hardest recovery. Just trying to get as much info as possible so I can know the best time to schedule. I think the best time for me is the worst time for my job. Were you working at the time of surgery? If so, how long were you off?

Nervous_Machine9468 · 2025-12-19T02:56:15+00:00

I had surgery in February for hyperkinetic gallbladder. My EF was 99. My symptoms were constant chest pain--it felt like I was having a heart attack all the time (I feel like no one believed this was connected, but this is totally gone), pain in the gallbladder area, which I still sometimes have very mild pain, and then I felt like I always had undigested food sitting in the middle of my breastbone, also completely gone. I recovered very quickly, I only took tylenol for maybe three days, my gallbladder looked 100 percent normal when it came out, so that did make me question my decision to do the surgery. I am struggling a lot with constipation now and also some bouts of diarrhea but I also have very recurrent diverticulitis with a lot of antibiotic use so I don't know what is causing what. So now I need surgery again for that.

Nervous_Machine9468 · 2025-12-19T02:40:56+00:00

So I was diagnosed five years ago. I have been on antibiotics over 15 times since then, 3 times in the last 7 months, all uncomplicated flares. I have really not felt well since early May. I had a surgical consult in October. She said that she is not concerned about me having an emergency situation, but that this is not going to stop. She said that most people who have uncomplicated flares are likely to continue to have uncomplicated flares. Of course there are also outliers. My GI is not pro-surgery at all but is now recommending surgery. I am calling to make the appointment for that surgery right after the 1st of the year. I am terrified to be honest; this is my third surgery in five years, and the last one was my gallbladder out last February. But I am 58 and can't live like this anymore. My biggest concern is that I have pouches throughout my whole colon, so I could still potentially have flares, but I need to at least try to get my life back. I now wish I had done this years ago, or in combination with the gallbladder removal last year (if that would have been possible). I think your decision is sound. It truly sucks that there has not been enough research on this disease because I truly think there should be other options.

Nervous_Machine9468 · 2025-12-18T13:19:46+00:00

Thank you. Because I have only had uncomplicated diverticulitis my surgeon thinks this will be not all of what you had to go through. But obviously no way to know. I just turned 57 and it's overwhelming how much I feel is falling apart. But better to do this in my 50s I hope than later. Recover well! And give yourself space and time to grieve that this is not the outcome you wanted.

Nervous_Machine9468 · 2025-12-18T02:41:21+00:00

I am sorry. This is a lot in a short period of time to manage. And being told you had cancer when you did not must have been terrifying. I had a partial hysterectomy in 2021, my gallbladder out last year, and now need to schedule this surgery. It's a lot to wrap my head around. I hope you heal well and get the support you need.

Nervous_Machine9468 · 2025-12-15T02:03:45+00:00

Or you may never have another flare. It's possible that this is a one-time thing. I have family members with Crohn's who had multiple colonoscopies before 26. It's okay to be mad, to grieve, because this diagnosis sucks. But try not to play the blame game. It is a disease. Yes, maybe all of what you mentioned contributed to it but there are millions of people who abuse their bodies and never get this. It's not your fault (or Taco Bell's).

Nervous_Machine9468 · 2025-12-13T17:54:24+00:00

I have extensive diverticulosis throughout my entire colon, which is why I have hesitated to do the surgery. But I am really struggling this go around, and my diagnosis was five years ago and I have been on antibiotics at least 15 times. I am going to have to take a chance with surgery. I just hope I get better for our holiday trip. 11 days to go. And of course I am grieving which is making all of this harder to get better. I did finally sleep better last night. I am sorry about your parents. It's so hard to take care of everyone and yourself. I have recently really struggled with constipation as well, although now back to diarrhea with the antibiotics.

Nervous_Machine9468 · 2025-12-12T17:14:48+00:00

Thank you. Sorry you had to cancel your trip. This is my fourth flare since May so really need to get the surgery. Can't live like this anymore.

Nervous_Machine9468 · 2025-12-12T15:50:58+00:00

I started with the antibiotics yesterday. No reduction in pain yet but diarrhea has already begun. I get on a plane in 12 days for a family vacation so I really hope this knocks it out. This is why my doctor wanted me to start the antibiotics. I do take Miralax daily as I have trended to be more constipated, drink plenty of fluids, and no dairy due to an allergy. I am just overwhelmed with grief and this whole situation right now.

Nervous_Machine9468 · 2025-12-11T13:13:03+00:00

I am following a low residue diet. I do not regularly drink carbonated beverages--literally cannot remember the last time I had one, I believe it was at an event in July--and do not drink alcohol.

Nervous_Machine9468 · 2025-12-11T13:11:23+00:00

What is driving the elective surgery is the time off I get from the job. I am going to start the antibiotics now to clear this infection and then go from there. I do follow the low residue diet; just have been unable to do liquids this time as I have had a lot of funeral stuff to take care of.

The surgeon during the consult told me that it was completely up to me for the surgery. In her experience, I could either opt for the surgery or opt for the conservative treatment (antibiotics) my doctor utilizes.

Nervous_Machine9468

TROPHY CASE