This is my first post for information. I have been reading and learning a lot from the wonderful people on this support site since my CLL diagnostic back in December 2020. I have negative markers of TP53, del17p and trisomy 12 but Ibrutinib has done wonders for me. You can read more about me in my bio.
2 to 3 weeks ago, after returning from a 11 days rough sailing trip from lake Erie to lake Michigan, I started to have lower abdominal cramping which I initially associated with more likely muscle strain due to the rough ride, until my bowel frequency changed (lower amount more often and soft) and the cramping intensity increased with pressure on the right side of the abdomen. A Sunday visit to the local clinic, after putting up with the cramps for a week, landed me in the ER to check my appendix and other lower abdomen organs. Blood work and urine analysis were all ok and normal, so the ER doc immediately sent me to the CT room for a scan which indicated no issues with the exception of a "loaded" intestinal track. Doc recommended I use Miralax for 4 to 5 days and see if it would help to "unload" my intestinal track and prescribed Levsin to be used as need to help with the cramping, and to consult with my Oncologist/Hematologist if the symptoms persisted.
After trying the Miralax, the cramping continued with various intensities through the day and night with frequent bowel movements and as I was already scheduled to see my Oncologist/Hematologist on Tuesday, which would include more blood work, I decided to wait till then.
The new blood work on Tuesday (9 days after the blood work in the ER) showed a small increase in lymphocytes and monocytes which were still in normal range, but a significant drop in Neutrophils absolute count from 2.77 to 0.66 K/uL (low end ranged is 2.30) and a drop from 45.6 to 14.1%.
After a great discussion with my Oncologist/Hematologist we felt that my persistent lower abdominal cramping and bowel movement change was not related to my CLL and probably not a new side effect of Ibrutinib and most likely an infection and he ordered stool sample labs. He also asked me to stop my daily Ibrutinib until we figure out what is going on and mentioned that a few days/weeks off the medication would not be an issue.
Well, we were right, the stool sample detected an presence of a Yersinia Enterocolitica infection:
"Yersinia enterocolitica is associated with animal foods (meat, poultry, or unpasteurized milk) and seafood. Yersinia bacteria are found in soil and water and cross-contamination during food handling is the main reason these bacteria are transferred through the food supply."
"Infection with Y. enterocolitica occurs most often in young children. Common symptoms in children are fever, abdominal pain, and diarrhea, which is often bloody. In older children and adults, right-sided abdominal pain and fever may be confused with symptoms of appendicitis."
Interesting that it can be confused with symptoms of appendicitis (my ER visit 10 days earlier).
"Yersinosis usually goes away on its own without antibiotic treatment. However, antibiotics may be used to treat more severe or complicated infections."
I have no idea how i contracted this infection and since it is contagious, suspect that my wife my also have it, since she has complained of some minor digestive symptoms but nothing to my level of discomfort.
For now my Oncologist/Hematologist, after consulting with colleagues specializing in the infectious field, wants me to wait and an see if the infection clears on its own and to hold off on my daily Ibrutinib until he tells me to start again. We are now due to talk on next Monday afternoon.
Has anyone on the forum dealt with this type of infection?
Sorry for the lengthy explanation, I felt that providing the details may also help someone in the future.
Richard
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Sanflore
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I have not had this, but I would like to comment if that's OK. I do have an infectious disease background, as well as experience dealing with infections as a CLL patient.
Before doing this "wait and see" approach, if it were me, I would ask both docs how many cases of this they have treated, and specifically in immune compromised patients. My concern would be this this particular bug, although it generally clears up in normal healthy people, is known to penetrate the mucosa and can then invade other organs. I would imagine this type of thing is more likely in those of us less able to fight infections.
From the Continuing Education (i.e. this is how the docs are learning the recommendations of how to treat)
"Yersinia can invade the epithelial cells and penetrate the mucosa, resulting in colonization of lymphoid tissue (Peyer patches). From here, the organism can spread to other organs."
Being immune compromised would make me personally push for antibiotic therapy sooner rather than later. I know antibiotics affect our gut, but my thoughts are, I can eat healthier and get gut probiotic supplements to help correct gut biome problems easier than fending off infectious agents. So if it were me, if I didn't *drastically* improve over the weekend, or if I saw no improvement At All by tomorrow morning, I would be asking for medication. And possibly for my spouse, also. And I have "normal" immune globulin levels. IDK what your particular situation is, but it is my belief that my success at avoiding hospitalizations from my yearly infection of some sort, is to aggressively treat it instead of waiting.
Thank you Sofia, your comments are most welcome and I have enjoyed reading your insight on many other issues.
I am taking your advise seriously, more specifically after receiving a call from the local state infectious disease office this afternoon (I was not aware that my infection was a mandatory reportable infection) to inquire about my condition and piece together how and where I could have contracted the infection and how to handle mitigating the possible spread to other persons I may come into contact with (30+ minutes of conversation with several precise questions). Turns out that on average only 10 individuals contract this specific infection in Wisconsin each year. So the answer to your question about how many immune compromised patients have they treated with this infection is most likely "none".
Not sure if psychological or not after knowing what is wrong with my gut, but my digestive issues have improved today with significantly less cramping and a more "normal" bowel movement this early evening. I will see how this evening/night/early morning goes and will reach out to my Oncologist/Hematologist with your comments and information, if not better in the morning.
It's likely that you are clearing it up as anticipated. You may want to consider this section of the Treatment guidelines from the training above:
"Antimotility agents should be avoided in patients with diarrhea, as they may worsen the infection. Antibiotics should be used only in selected patients such as the elderly, immunocompromised individuals or patients with diabetes. Children may need admission for dehydration or sepsis. Most patients are anorexic and may require an overnight admission for intravenous (IV) hydration. In some cases, patients are admitted because it is not possible to rule out appendicitis."
Note the recommendation *is* to use antibiotics in immune compromised folk. Among those listed earlier in that paragraph excerpt are Bactim DS, which also prevents some other opportunistic critters in the immune compromised. Having one infection, while you are fighting it off, can weaken some immune compromised to where another can set in. That's where the stories of pneumonia on top of Covid, or another infection leading to sepsis, play in. Since the ones covered by Bactrim DS also clear up this infection, I would be asking for that. I don't have a sulfa allergy and have taken that med successfully before, I just have to avoid a lot of sun exposure, I am susceptible to sun-drug reactions. IDK how far i to this diagnosis you are, or if you have a history if infections, but I personally get around 1 a year of some sort. So in my case, I would be pushing for the antibiotic. Something to discuss on Monday. My concern around "not treating" would be if you would then have a low grade level of this bug colonizing your gut. If you did, at times of various stressors it can pop out again (like people with MRSA get colonized, then people can have it come back over and over), or how people with some of the herpesviruses can get repeat occurences of shingles or zoster.
So no Lomotil or Imodium or other antidiarrheal, stay very hydrated. Make yourself eat even if you have no appetite, it doesn't have to be much, but don't fast. IDK about you but I find things like oatmeal, rice, yoghurt (no sugar, put fruit or something like stevia in if you need sweet), watermelon, blueberry, carrot, chicken, tended to not aggravate my bowel as much when I was having diarrhea issues on the ibrutinib. Things easier to digest as opposed to leafy greens and fatty stuff.
And ask your doc, why, if the treatment recommendations say to use antibiotics in the immune compromised, they aren't using them on YOU. You need to clear it up, not have low level colonies that can hang around and spread to other tissues, or infect deeper into the gut wall and cause an abcess. We look and act so "normal" I think our docs forget that. If you were older, or if you have diabetes, it's an automatic. You are immune compromised, so why isn't it an automatic? There's reasons the official guidelines say "treat in immune compromised." Send your doc the link, it's why I gave it to you. I find my GP will do what I ask, when I provide documentation. It's ultimately your/your doc's choice, of course, but FWIW I think the reason I have never been hospitalized for my recurring MRSA infections is because I hightail it to the docs and get treatment early. I don't wait until it could overwhelm my system, land me in the hospital, and potentially lead to sepsis. With us being immune compromised, we can't afford to do as normal folk. If it were me, since I am also on a B cell depleting targeted treatment, I would be saying something like this (with either a hard copy of the above link with highlighted relevant sentences, or my iPad with the article pulled upon the screen)
"I understand there is a risk with antibiotic use, but since the official recommendations are to treat immune compromised people, I would prefer to do this. I am on a B cell depleting treatment and not making antibodies. If I weren't on treatment I might feel differently, but since I am, I want to do the antibiotics as recommended in the official literature."
FWIW I have had success with this method (having a copy of the info to give my doc) when requesting something, whether GP or CLL specialist. If there is a medically valid reason to do something, they generally will, and providing the reference means they don't have to look it up themselves. Similar to the methods one uses when asking their boss for something at work Make it easy for them, they will do it haha
wishing you well and hope you get this under control quickly
Thank you for posting - it is so helpful to hear about other peoples journeys , the hard parts and the good parts . Our doctors who may be experts in many medical issues in addition to CLL , may not be familiar everything … we have to be our best advocates and the information shared here is extremely helpful keeping us aware and informed …..
I have not had that infection yet( knock on wood). I did have a C-Diff infection while on Ibrutinib that was a difficult to get rid of. My dosage was lowered to 1 a day for months to get rid of it. I also got a infection in my blood and got sepsis while taking Ibrutinib. Doctor's determined that infection was caused from cockroach feces. We had just moved into a rental home that was supposed to be cleaned already but it was not. I cleaned because i wanted it done good before we moved in our belongings. That one day of cleaning landed me in the hospital for over two weeks. I had no idea that cockroaches even had feces. 🤷 I had no idea how careful we have to be till then. I now where gloves to clean, garden and do others laundry. Is it possible that some meat or dairy spoiled on your sailing journey? I used to sail and we wouldn't always have the fridge running. We would use dry ice while sailing. Did you fish while sailing?
This particular bug is most often found from raw pork. So preparing bacon or other pork products, or (more worrisome) a restaurant where one got breakfast (even if you yourself didn't order bacon) or another place where pork might be handled/prepared.
FYI, picking up my prescription of Bactrim in a few minutes (10 days, twice a day).
Yesterday was a false alarm of "feeling better". Had a terrible night and sharp cramping this morning triggering a significant soft bowel movement. Lower milder abdominal cramping with pressure to the right (like an appendix issue) are remaining pretty constant today, so I pressed my Doc and sent him the information you provided to me. (big Thank you)
I am suspecting possibly 2 sources, we did have bacon on the trip during some morning breakfast meals, could it also come from the water tank supply on the sailboat? It was located in a marina in lake Erie that has stagnant green water with a lot of growth (like a swamp) and had not been used for a few weeks. I did flush the water tank system with a mixture of bleach to try and sanitize the system and did not drink from the system yet, BUT, I did brush me teeth using that water during the trip! Probably not a good idea. I will be re-sanitizing the system a few more times this weekend.
It's possible that the bug got into the water supply. But that would mean pork, or someone handling pork, was messing with something water supply related. All it takes is someone not thoroughly cleaning/missing a spot on a surface/washing hands.
Erie's not the cleanest lake, and other campers/sailors could have contaminated the area. I don't have any more knowledge other than what that article stated.
Only use bottled/purified water for brushing teeth, moving forward. Bleach will not kill everything. That's a source people may not consider for a number of potential problems, since we don't swallow and forget that bugs can get in at the tooth-gum interface.
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Make it easy for them, they will do it haha
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