Overwhelmed!

I’ve had a resection because of diverticulitis. They removed 8 inches of my sigmoid. I did/do have diverticulosis pockets throughout my whole colon but the sigmoid was the worst.

I didn’t have any more diverticulitis episodes right after my surgery but 18 months later I developed UC. One dr told me that it sometimes happens after a surgery like mine but I do not know if that’s true or not.

I have had 2-3 more episodes of diverticulitis in the last several years but they resolved each time after a course of antibiotics. Have you tried a course of antibiotics and does it help?

With diverticulitis I had specific pain and symptoms that would resolve with antibiotics and was pretty much ok in between. If you do have more diverticulosis pockets throughout your colon chances are surgery can greatly improve your quality of life but not cure you completely. It just depends.

After my second diverticulitis episode my dr recommended surgery to remove the rest of my colon but my attacks have been far enough in between that I can handle infrequent attacks. I think a general rule of thumb is 2 or more attacks in one year, they recommend surgery. There is always danger of perforation with diverticulitis. My last attack I had a microperforation. My surgeon told me after my surgery that the section they removed had a small perforation in it.

Surgery itself was one 4-5 inch incision and 4 small laparoscopic ones. I was in hospital for 5 days. The day after was pretty rough but after that wasn’t too bad. I did have to stay an extra day in hospital after surgery because they wouldn’t discharge me until I had a bowel movement and my bowels didn’t want to restart.

Any other questions?

Yes I have an anastomosis. I thought the surgeon told me he used some kind of circular stapler for it. But I GI said he saw a stitch during a colonoscopy so I really don’t know. I did have staples instead of sutures on the incisions. That was my first time having staples so that was a little freaky. I was scared it would hurt taking them out but they didn’t at all.

It’s been almost 10 years since my surgery so I don’t recall recovery time. I only remember waking up and immediately feeling pain and hitting the morphine button a lot. Morphine makes me puke tho so after throwing up with a super sore stomach I didn’t use that anymore. I don’t like pain pills either so I don’t think I took any of those either although I may have used them temporarily.

Surgery is never fun but I only recall the first day or two being really bad. I do recall being really tired for a long time after.

Never heard of your condition before! Did they do a biopsy during your colonoscopy and that was the diagnosis?

Thanks for your replies

Flowers - I had everything: blood work, colonoscopy and ct scan with contrast. The pathology report said “consistent with diverticular colitis”. The surgeon mentioned using staples. She said recovery time 6-8 weeks. But it would take longer for bowels to settle. During that transitional time could be constipation, diarrhea, etc.

Old Hat - I tried lots of different diets and alternatives. With your advice I switched to balsalazide disodium. While on it at 9 caps I didn’t have major flares (major flare for me is when instead of gas I pass bloody mucus), so I think it works better than Asacol. But it doesn’t put me in remission. It’s not horrible, but it’s like I am in constant mild/moderate flare. And it’s exhausting. Also all my colonoscopies including the latest show inflammation. This is a concern. Logically the next move would be biological, which is also scary considering side effects, etc.
Of course, if they were talking total colectomy with ostomy, it would be different story. But removing 20cn of sigmoid to improve quality of life seems worth to consider. Oh well, I need to process it mentally and emotionally.

Thanks for listening

I just want to add — having been through this surgery: I agree with a 2nd opinion. But be aware of something I’ve learned — surgeons LOVE to do surgery. So it does influence their recommendations (in my opinion).

Surgery to remove a part of your body—even if it’s unhealthy— is permanent and cannot be undone. I also understand the frustration and tiredness that comes from being chronically ill. But sometimes surgery does not cure things In my case it made my diverticular disease better (fewer attacks and farther between), but I still have them. And it possibly led to my UC diagnosis— although granted that could have happened anyway.

I tried to look up your diagnosis but came up empty. Do you have any studies or links you could share? I just don’t understand how diverticulosis pockets cause inflammation but not infections requiring antibiotics.

If I were you I think I would look for a 2nd GI opinion and another surgical opinion. And ask specifically if they think surgery will permanently cure you. I understand they will say they can’t say for sure, but they may have a more involved explanation that helps settle your mind.

Second, personally I would ask to give a biologic a try. I’ve had a good response to my biologic with so far (after 6+ years) no ill effects, so that’s my opinion only. But at least a biologic isn’t a permanent change to your body and maybe it would work? And if not then you could do the surgery.

I felt I didn’t have much choice in my surgery decision as I’d been on antibiotics 3x in one year and flagy (which is always prescribed along with another antibiotic) is very rough on me and makes me almost more ill than the disease itself. After 3+ rounds of that, I mainly decided on the surgery because I didn’t ever want to take flagyl again. It didn’t turn out that way as I’ve had 2-3 more episodes since my surgery. So… depending on the extent and location of your disease— in my opinion— surgery might not be a cure. In my case my diverticulitis pockets were closer together and more numerous in the section they removed, but there were still plenty left in in the rest of my colon.

Good luck and let us know what you decide.

Hi I am sorry to hear about your condition, its not something I have any experience.

Zeposia is not actually a biologic although the safety profile and degree of immunosuppression is broadly comparable to the biologics. I was wondering if that would make it cheaper (since it is tablets and easier to manufacture than a biologic) - a quick google says $8000 per month 😳 Is that less than biologics? I'm in Europe so don't have a feel for US prices (other than that they are exorbitant). But i was wondering if that was why the dr suggested it over a biologic treatment?