Does anyone get Stomach Discomfort from CLL , or just feeling malaise and cruddy ?
I am not on any treatments as of yet, and I was diagnosed recently, May 2018.
Thanks and I wish everyone to feel well and that those on treatment are doing well, those, like me who don't need it , yet, that CLL is moving at a very slow pace !
Previously you shared that your blood counts were good other than your elevated lymphocyte count. While remembering that with CLL, we are still subject to common health issues, could it be that your immunity is sufficiently low enough that you are more at risk of stomach upsets? What's your neutrophil count? (It's in the WBC differential section of your complete blood exam results near your lymphocyte count). Likewise, do you have your immunoglobulin test results (IgA, IgG and IgM)? That's a special blood test only occasionally done, so you may need to ask for it.
Has your diet changed lately, or are the foods you eat likely to be high in bacteria counts? Healthy people can tolerate this whereas we may not. Soft cheeses, raw foods not cleaned thoroughly, food prepared a long time before eating - particularly from self serve banquet facilities and so on may be responsible or perhaps you've just developed a food allergy? There are many possible causes, with the impact of CLL on your immunity just one of them.
Neil
Do you have an enlarged spleen? That can cause some discomfort.
Since I had diverticulitis that how they found I had SLL I’ve been lactose intolerant. Since I’ve been diagnosed with both I have off and on stomachaches and occasionally have nausea even though I’m not eating Dairy products.
I take Dramamine and the problem goes away. So in closing I don’t know if it’s my sll or my diverticulitis causing my off and on stomachache/nausea. All my Blood work is normal and my CT’s and Pet scan show all organs are normal and the few enlarged lymph nodes have been stable since diagnosed with diverticulitis about 2 years ago and SLL a year ago. So I have been wondering the same thing if it’s my sll or diverticulosis causing my issues. I’m on watch and monitor. Best wishes John
funny...that's how I've been feeling too. I have put it down to working too hard and not yet having a proper balance with my condition, diagnosis only confirmed in Dec 2018. Had to take a day off work last week where I was nauseous, felt yuk, no energy to even make a cuppa, and when I drove to and from work the next day my left side under my ribs was very uncomfortable - thinking it might have been slightly enlarged spleen, but don't know what it feels like (happy for anyone to provide some illumination!!). I could sleep for Ireland!!! Bloods taken yesterday and I see the haematologist 11th March so hopefully will see what's been happening.
oh - and appetite really taking a hit - forcing myself to eat as I could easily go all day without - trying to keep healthy.
My diagnosis was 6 yrs. ago and each year my lymphocyte counts go higher and immunoglobulin lower. After biopsies and extensive testing, I've also been diagnosed with Chronic Pancreatitis, Lymphocytic Colitis, EPI (Exocrine Pancreatic Insufficiency)....so much to go wrong with a GI tract! Having been told that I'm immuno-compromised, I've no idea if it's related to CLL, but a very restricted diet has helped me immensely. I follow the FODMAP diet, eat almost no raw foods and am vigilant about the amount and kinds of fat I consume. Yes, I feel profound exhaustion at times from the CLL, and feel GI pain, cramping and nausea when not careful with eating, but my life is blessed and I smile in gratitude for being able to live in serene surroundings. May you all have a blessed day!
Mutamer, I was diagnosed 6 years ago and on wait and watch.....no symptoms, but do have problems with digestion, causing constant burping and abdominal discomfort. I've tried the usual antacids, etc, with no luck. I do a lot of burping, even 12 or more hours with no food eaten. I wonder if you had similar symptoms before the FODMAP diet? I have not heard of that before, so it aroused my interest. Thank you so much.
Oh yes, aptucxet, all symptoms you write of...check, check! I've had them all. I couldn't understand that I eat only organic food and tried to eat what I thought was super-healthy...an apple a day, cauliflower, cashews, onions, garlic, cheese, etc. After it was recommended by my gastroenterologist that I try the FODMAP plan: webmd.com/ibs/guide/what-is... verywellhealth.com/foods-on...
I had immediate relief and after eating this vigilantly for a couple months, I can eat small amounts periodically now without symptoms.
Best to you!
Really? The constant burping? That's my main complaint. I have tried so many different approaches with no luck, I am beginning to think the problem may be enlarged nodes in my gut interfering with digestion. i guess only a scan would show if that is the problem. Like you, I have been eating a healthy diet for the past 4 or 5 years......low carbs, healthy fats, minimum sugar, cruciferous veggies......on and on. I'm certainly encouraged learning about your results with the
FODMAP approach. Sure hate giving up the cashews, macadamias, pecans, kefir, yogurt, etc. Thank you again!
Have you seen a gastroenterologist? I began with a series of Upper GI tests and they discovered the problem. While I didn't like subjecting myself to these tests, it's a great relief to know exactly what's causing the symptoms and to understand how to get relief.
I have not seen a GI doctor. I hesitate to submit to the tests that he would order. Perhaps my burping and bloated problem is different from yours and gardening-girl's......as i have not lost weight and have not had debilitating abdominal pains. Nevertheless, I am going to try the FODMAP plan......at least in part.....especially avoiding dairy for a while. I bought almond milk today......ughh! Best wishes to you.
Sometimes it's just time to bite the bullet and put ourselves in the hands of someone who can get to the bottom of whatever is causing our discomfort. My gastroenterologist is amazing. I had a scan done and picked up the report from the imaging center the next day. Then my gastroenterologist called to say that I has two spots showing diverticulitis. When I said that I had read the report, which said that everything was clear, he replied that that is why he read his own films. A week later - pain gone.
I can’t say enough about following the FODMAP diet to ease indigestion, burping, heartburn, bloating. Monash University developed a wonderful app to help you wrap your head around FODMAPs. It costs a little but well worth it. Sometimes even healthy food can really do a number on your digestion - case in point: cauliflower, broccoli, mushrooms. Go figure.
jemorgen, I looked at the Monash FODMAP list of foods......showing rye and wheat on the HIGH list.........and also on the LOW list. Very confusing to me. Maybe I'm not reading it correctly.
The FODMAP diet looks at a variety sugars in foods such as fructans, oligosaccharides, etc. some people react to one element but not another. The idea is that by cutting out all these foods initially then introducing them back gradually you figure out which foods you can and cannot eat - or what you can eat a bit of but not a lot of. The app helps make this easier
Yes, I think I understand that........but what confused me was the fact that the food chart showed rye and wheat in the HIGH list ......and they also showed it in the LOW list. I don't know how it can be in BOTH lists.
jemorgan, MY BAD.....I looked at the list again and it shows wheat and rye FREE breads. I missed the FREE earlier. Anyway, I am going to give the FODMAP a shot and see how it goes. Thanks again
mutamer, I also have been diagnosed with EPI, and as long as I faithfully take a pancrelipase capsule (Creon 6000) with any food that I eat, I can eat anything without experiencing any problems. Have you been prescribed pancreatic enzyme replacement therapy (PERT)? If not, you might want to ask your physician about it. It saved my life. Before my EPI diagnosis my weight had dropped to 48 kg/~105 lbs, and I had nearly debilitating intestinal problems.
gardening-girl
Gardening-Girl....Your story sounds so similar to mine..."debilitating intestinal problems," oh yes! My weight had also dropped to 105lbs and I often was curled up in a ball with pain. I was given Creon and had an immediate reaction...hives over my body. The docs discovered that I am allergic to anything porcine and all prescription pancreatic enzymes are pig-derived. So that has hindered my recovery and forced me to rely on food choices for relief. I am allowed 20 grams of fat a day. It's awesome that Creon has worked for you.
Wishing you a joy-filled day!
CLL with Abdominal discomfort. 
Second cancer from CLL???
Well but not feeling wellness
Feeling scared, nervous, you name it.....
