CLL and Chrohn’s disease

[Gino23]

hi, I have had CLL for four years on W&W. Now, I have been diagnosed with Chrohn’s disease and will be starting Entyvio infusions. CLL specialist says this is fine to take with CLL. Just wondering if anyone else doing infusions for Chrohn’s and having any problem with there CLL!! Thank you

[SofiaDeo]

Have you had a biopsy of any of the inflamed area, to determine if the area is infiltrated with lymphocytes/CLL? If so, it may be better to solve the root problem.

There is at least one person here who was going to have surgery for gut problems, but decided to treat their CLL first. Their gut problems cleared up. There are some here who had problems with other organs, and it was determined ultimately to be CLL, and the CLL needed treatment.

When I went to have my colonoscopy, I asked my specialist "if there are any problem spots, how do I get them checked for CLL"? He said to have a pathologist look for lymphocytes. So, have you had this done?

[Gino23 in reply to SofiaDeo]

Yes, my biopsies in my colon have been checked for CLL, there is no CLL but inflammation and ulcers on my small intestines, causing anemia. Thank you

[SofiaDeo in reply to Gino23]

Sorry to hear you have another problem, on top of the CLL. I hope the treatment works well for you!

[Gino23 in reply to SofiaDeo]

Thank you ☺️

[PoisonDwarf in reply to SofiaDeo]

Hi SofiaDeo,

Please forgive me Gino23 for jumping into your thread. I hope the infusions deal with the Crohn's.

My stomach (antrum and body) biopsy came back positive for focal intestinal metaplasia, negative for dysplasia. Is metaplasia a catch all term that would include cll infiltration or would the pathologist need to be instructed specifically to look for lymphocytes do you know?

It did pick up severe, active H. Pylori gastritis but thankfully not celiac disease. I have a CT enterography scheduled for tomorrow to check the small intestine. Hopefully know more soon.

Thanks for any info.

[SofiaDeo in reply to PoisonDwarf]

Metaplasia is considered a "pre-cancerous" condition, and IMO if there were actual CLL lymphocytes present, it would have been noted.

Your "positive for...metaplasia, negative for dysplasia" means the pathologist is of the opinion that the cell changes being seen, are all of a larger degree of change (metaplasia) than only a small amount of change (dysplasia).

my.clevelandclinic.org/heal...

So you'll need to be monitored,and the cause(s) investigated. Since you have been diagnosed with severe H.Pylori infection, once that is treated, the tissues may slowly revert back to normal as you build new gut tissue that isn't infected, it may be the only cause of the metaplasia. If you haven't changed your diet, you may be asked to, to prevent reoccurrence of infection and to try to optimize a healthy gut biome.

[PoisonDwarf in reply to SofiaDeo]

Hi SofiaDeo,

Thanks for the link and information, it was most useful.

Since I posted, the gastroenterologist made an addendum to his original report. He added a post-operative diagnosis 'normal gastroscopy with biopsies pending to rule out H. Pylori or Celiac disease, unremarkable colonoscopy.' This aligns with his comment to me "what to do with you, visually the scopes were abnormally normal."

The scopes were done to rule out occult bleeding as a cause for iron deficiency without anemia. The scopes were clear, the 'severe H. Pylori' caught by the biopsy.

I questioned if I still needed the CT Enterography as H. Pylori would account for malabsorption. He still wanted the CT due to my CLL/SLL. CT was clear of any small intestinal disease but showed borderline hepatosplenomegaly (spleen 13cm & liver 19cm) & numerous enlarged lymph nodes throughout the abdomen, pelvis and inguinal regions.

Interestingly, the follow up CBC and ferritin check 4 weeks post antibiotic treatment showed ferritin level jumped upwards from 27 to 55, but a full iron panel done yesterday showed a drop in ferritin only. It's now down to 40. Still no anemia. I have a urea breath test scheduled for Thursday. That will show if the infection is cleared and I guess if the ferritin bounce was due to inflammation.

Co-incidentally, a doppler ultrasound to rule out vascular thoracic outlet syndrome showed a partial venous obstruction from an enlarged axillary node. Neurology will repeat EMG & nerve conduction testing to see if there's a neurogenic cause for ongoing peripheral nerve damage and debilitating symptoms.

[Davidcara in reply to SofiaDeo]

I do not want to hijack this thread. So will shortly be posting new question. Hope you respond

[CoachVera55]

Yes I have slow motility/peristalsis after reaching stage 4 & 13 months post BTK Inhibitor Therapy. I am presently dealing with a 3 month long GI Imbalance after antibiotics. I hope to deposit a stool specimen today. My gut hasn’t been ‘normal’ in over 2yrs 🤦🏽‍♀️ #GODSPEED🙏🏾

[LeoPa]

Hi, did you consider possible connections between your dietary habits and Crohn's?

[RCA123]

hi there. I’m in the same boat. I was doing infusions of Entyvio for a few years and switched over to self auto inject. No problems to report

[Gino23 in reply to RCA123]

Thank you

[Gino23 in reply to RCA123]

Did your Chrohn’s improve and were you experiencing any joint or back pain? Doctor told me, my joint pain might not improve on Entyvio!