Anyone on W&W with CLL have sudden acute diarrhea?

[Bar68]

I have CLL/SLL, and am on watch & wait. I have had a sudden bout of acute diarrhea lasting about 2-1/2 weeks. Things are better, but I do not feel entirely better/great. Blood work was normal. Stool culture did not show bacteria, but did show an elevated fecal calprotectin. I did not see report, so not sure how elevated. After consulting Dr. Google, I saw that fecal calprotectin could be related to colitis or to cancer. Am scheduled for a colonoscopy in a week to rule out colitis and polyps etc, but now worrying about how worried about a bad prognosis I should be. Especially since people with CLL are prone to secondary cancers. Any similar experiences or words of wisdom/advice? I did email my physician asking to see copy of stool culture report, as was not aware of the elevated fecal calprotectin until the gastroenterologist mentioned it today during me pre-colonoscopy office visit.

[Walkingtall62]

Hi, just wondering if you took any medication to try and fix the diarrhoea. Hope you are feeling better

[Bar68 in reply to Walkingtall62]

No. But I should have asked about doing that after stool culture showed no bacterial infection. I now wonder if it would have calmed down the inflammation. Since I am scheduled for colonoscopy in a week, I feel it is too late to do now.

[LeoPa]

Possible food poisoning of viral origin comes to mind.

[blowinginthewind]

Sending a big friendly germ free hug. I am into week 8 of these symptoms- intermittent, I have times when I am ok for several days. I am in UK, and when I told GP (several weeks into this) they sent me to se gastroenterologist on the NHS 2 week cancer pathway. Last week I had a CT colonoscopy, still have the clear out medication, but the CT scans would show up whether raised lymph nodes or enlarged were obstructing the bowel. And this week I had a flexible sigmoidoscopy, that wasn't too bad to have as I opted for no sedation so I could watch the screen - yes I am weird. The good news is there is no sign of cancer, and I am off the 2 week pathway. Don't have a diagnosis yet - all stool samples are clear too. So I am waiting for conversation with consultant this week.

I had all of these tests because of CLL, and because of the long list of family who had bowel cancer, going back about 5 or 6 generations. My friend, which no CLL or anything else wrong with her had these symptoms starting a few weeks before me, and still not completely ok. Her GP told her "there is something going round" - don't know if he actually tested for infections, my GP did and mine wasn't an infection.

I hope you get this sorted quickly because I know how horrible it is.

Liz in Manchester UK

[Bar68]

Hi Liz. Thanks for your input & commiseration. What is the difference between a CT colonoscopy and regular colonoscopy? Barbara

[happyclappy]

Nuffin like Dr Google to put the schitz up you! Pardon the pun

[Gooseman]

Sorry to hear you're worrying a lot right now. (probably most of us do before the tests).

I've had 6 colonoscopies starting in 2014. The first one found a 2 cm. lump in the splenic flexure that was benign, and since then they've found several small polyps that have all been benign.

Several times I've had intermittent diarrhea in the past 10 years, but it's almost always caused from a bacterial infection, .... like this past winter when I was in Asia for 3 months where I ate and drank lots of wonderful street food. Thankfully some friends gave me a de-worming pill that I think fixed the problem.

From my last scope that I had in Oct./2022, my biggest advice is to be kind to your digestive system when you start eating again after the scope. (NO spicey or gassy foods). I made this mistake and started vomiting a few hours later, which just made me weaker and weaker, and then I couldn't keep anything down.

Wishing you good results from your test. G.

[Vlaminck]

Hey, Bar, if you are on the east coast of US, ask docs to test you for alpha gal --- it's getting more and more common, from tick bite, and can play havoc with your body, especially digestive system. My son was finally diagnosed, has all your symptoms (3 months now, and will finally get endoscopy end of June and colonoscopy early July) Univ of VA here, where I went to school, has been worse than horrible in getting him in for tests, losing referrals, etc etc. He had Ctscan ordered by his non-UVA doc; nothing. Blood tests, normal. Does have calprotectin. Hate to tell you but if you get alpha gal, you are allergic to everything mammal. All meat, dairy, etc, etc. Not chicken or eggs but otherwise have to go pretty much vegan. Good luck. Let us know results.

[Bar68 in reply to Vlaminck]

Thank you!