I am at my wits end with suffering from stomach pains and swelling since I first started my treatment 4 years ago on ibrutinib, along with 3 days a week antibiotic (morning and night) and a daily Aciclovir tablet. Initially, after about 4ā6 months on the drugs, my lower legs and feet became swollen and I started to gain weight, then my stomach swelled with pain along with daily diarrhoea. After much discussion with my doctor, he changed the drug to Calquence, but the same issues have continued.
I've had test after test throughout, from colonoscopies, scans, MRI's etc., trying to find the cause, but to no avail, and I think the doctors are running out on what other part of the body can be tested upon! The worst part, is the pain can't be managed, so my quality of life is badly affected. So my question to anyone kindly reading my story, is for any advice on the probable cause or if someone has the same problem, then what was their outcome? I am truly grateful for any feed back and thank you x
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MorganHardy
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I really feel for you suffering with this particularly as the cause is proving elusive. Iāve just had a couple of weeks suffering with very painful gastritis and that was enough to sap my resolve after just coming out of Covid.
Any suggestions on my part would be speculative because it sounds like theyāve investigated everything. My first thought from the symptoms was to wonder about a renal issue and itās interesting that it seemed to start with the start of your treatment and in particular antibiotics. They can be very hard on the gut biome. Stomach and leg swelling is sometimes associated with liver issues.
Stomach pain is miserable and unfortunately meds can sometimes just irritate the lining of the stomach. I can only imagine theyāve tried all the usual helpful remedies like PPI (lansoprozole etc) ? Iām not aware of suffering with acid but theyāve helped me.
Try to keep a diary about better days and what youāve eaten. I had to resort to codeine for the pain but thatās had the efffect of negatively impacting my kidney function (eGFR). Iām due to have follow up blood tests soon.
Sending huge best wishes to you. This is hard to endure for you so find whatever helps. A wheat bag warmed in the microwave helped me when my stomach was particularly painful and anti-spasmodic tablets stopped muscle contractions. However, your doctor would need to authorise those.
Thank you for such a thoughtful reply. I have suspected, for a long time, that the long-term use of antibiotics might be the cause and will discuss this with the stomach specialist next week. I don't suffer with acid like symptoms, just chronic pain in the lower abdomen and a lack of appetite. This, in turn, makes me tired all the time with little to no energy. My very best wishes and appreciation x
MorganHardy, my gastro gave me dicyclomine for my painful stomach discomfort. It works very well. He thinks it is because my colon contractions need to be slowed down. My colonoscopy was clear. š Sandra
Yes, that's my first priority too, but if my stomach were to go down, I'd know there was some healing going on. I'm glad you're feeling better Sandra x
So sorry. The only thing I can think of is consulting a pain management practice at a major medical center with a GI doctor on board. I listened to a three hour podcast with Dr. Sean Mackey of the Stanford Pain Management Center who said he himself had a severe reaction to a food and debilitating stomach pain. He finally consulted an allergist who said she saw this scenario alot.
Thank you for your suggestion. I am seeing the stomach specialist again, at the end of this month, and will insist on some pain management. All my haematologist has recommended is paracetamol, which does diddly-squat. I was totally fine before I started taking the drugs and have never had any issues with food or allergies and have never even had a weight issue. Mostly, though, it's the pain that's so awful to live with and just to know why, would help enormously.
Yes, he did about 2 years ago. I was taken off ibrutinib for 3 weeks and then put onto Calquence to no avail, other than keeping my blood healthy. He said at the time, that proved the drug wasn't the cause, but I have often wondered, if 3 weeks was long enough to make that assessment?
I was gonna suggest an allergist, b/c it seems like the only consultant not mentioned. Pain is a lesser-known symptom of many food allergy reactions.
So, I would document your food eaten and how you feel for a week. And then if still waiting for the doc, I might switch up something from my diet (biggest suspects - dairy or gluten) and drop it, and see how I felt after a week.
Thank you. I have tried removing anything that I felt has caused a flair-up, for example, I thought broccoli was a culprit, but the next time I ate it, I was fine. I can only manage small portions of food and eat just twice a day, because of a lack of appetite, yet strangely, have put on a lot of weight. Maybe, that's all the bloating, which never goes down, even on days I have fasted. Still, I will put your suggestion to the doctor and I appreciate you taking the time to reply to me x
Thank you for that suggestion. I have tried up to a point to remove foods that I thought may have caused a flare-up, but even when I have fasted for 24ā48 hours (which is easy for me, having no appetite), the pain is the same. I won't rule this out though and at this stage, am prepared to try anything! Best wishes to you x
As Newdawn suggested the wheat bag, I use a bag filled with rice and heated up in the microwave. I can place it under a 10 inch wide back support belt and carry it around with me and with a sweater or loose blouse nobody even notices.
I am sorry you are so miserable on this medication. Have you seen a cardiologist? I have a family member whose legs swell up and it seems to be related to his heart.
I restrict my intake of regular salt. We use a salt substitute. I find that I retain water easily if we eat food at a restaurant or prepared by a restaurant because of the salt.
Sorry to hear about your miserable experiences. I canāt see food intolerance and allergies having been tested. Your hospital should have a facility, but donāt use the online testing.
Thank you for writing. No, I have never suffered with stomach issues and have been very lucky with my health until the diagnosis. I've been banging on doors for over 3 years and the last gruesome colonoscopy has yet again, proved negative apart from mild diverticulitis, which has already been discarded. My limbs are quite slim now, but my stomach makes me look about 7 months pregnant and stays swollen and painful, no matter what. Just knowing what is wrong, would help?
I would be inclined to really check out whether the damage to the gut microbiome through the constant use of antibiotics could be a factor. I myself have had digestive problems after I was given antibiotics for a bout of covid January 2021, and then again a month later for an operation to remove a skin cancer, and then again six months later for a gall bladder operation. I was also taking Ibrutinib at the time so that could also have been the cause. I tend to think that it was both. But I too looked like I was pregnant with a badly swollen belly due to gas. It was painful and embarrassing. My haematologist was not much use in this respect other than suggesting I could interrupt my Ibrutinib usage for a week at a time when it got to the point of interfering with my life. I did that a few times and it did relieve for a while, but then it would come back. Then last year February I stopped with the Ibrutinib due to intolerance and I am still having a pause from medication now. For the first five months after stopping, the digestive problems continued, but after that it has gradually improved and now at this moment the problem is very minor and I think still improving. It is however clearly a slow process of repair!
I had a colonic cleansing last year and I consulted a nutritional therapist who had me do a gut microbiome analysis. It turned out that I was severely lacking in the Bifido bacterium. I have been eating/drinking kefir, kombucha and kimchi as well as my usual live yoghurt and have been taking a quality bifida bacterium probiotic on the advice of the nutritional therapist.
I hope you can find a way forward that works for you,
Oh my goodness, you have almost written my CLL biography! I can't thank you enough, and I hope you won't mind, if I show your reply to my doctor next week. My daughter lives far away and visited me last summer, and she was relentless in her opinion that the antibiotics were destroying my gut. I agreed with her, but was still suspicious of being treated with Calquence as well. I was on ibrutinib prior to that, and because of my stomach issues, was taken off it for 3 weeks before starting the drug I'm on now. My doctor said that it proved it was not the drugs causing the problem, but I remember feeling at the time, that 3 weeks wasn't long enough to make that assessment?
I am so grateful to you for this extremely helpful summary and truly, you have given me hope again!
I am so pleased to hear that my experience could be of some use to you . Of course you can show what I have written to your doctor. The need to repair the gut microbiome after intense or prolonged bouts of antibiotic use is becoming more generally accepted now and hopefully your doctor will also be aware of that.
Have you heard of ZOE? It is a scientifically based programme to educate about nutrition and digestive health. They make a weekly podcast/YouTube video and offer the possibility to have yourself tested for gut microbiome, blood sugar and fat levels after eating certain foods. Professor Tim Specter is one of the leading people in it. You might find it interesting to find and listen to their programme about bloating and gas.
I think it could also be interesting to see if your gut reacts more to certain foods than others. And remember that can change in time. A food that is highly problematic now that your whole system is not functioning properly may be possible again once it has quietened down. For instance, I took milk kefir for years in a drinkable form but then could not any longer. It was too 'strong' for my gut. I stopped for about one and a half years and switched to water kefir. But now as I am feeling better I am again taking small doses of milk kefir with my breakfast, and do not have any problem.
In terms of the Ibrutinib I was taking. I should add that I already was on a reduced dose when all these problems began. I was initially on a 420mg dose but had such terrible skin reactions that that dose was reduced twice. I was for two years on 140mg per day and it is in that time that I had my digestive disturbances, and also after I stopped taking Ibrutinib altogether last year February due to intolerance ( meaning allergy like symptoms such as dizziness, confusion, inability to function properly, deep fatigue for a few hours a day after taking my daily dose of Ibrutinib )
I am happy to answer any questions you may have. Good luck!
Thank you for supporting my use of your own story. It is in this area that I feel is the cause for all my pain, because I don't react to any given foods. The other week, because of having a colonoscopy and gastroscopy, I fasted for 48 hours, and yet the flare-up I was experiencing at the time, didn't settle down until several days later, after I had starting to eat again. There is simply no pattern, except that the mornings are the worst and on my better days, it eases up by around noon. If it's bad, then there's no let-up. The only thing I am grateful for, is I rarely ever have pain throughout the night, so at least I can sleep.
It may take some time, but if I have any good news to share, I will post my outcome on here. My very best wishes to you x
Hello again Morganhardy, I am just thinking with you again and am hoping my experience can help you with asking further questions of your doctor(s).
At what time in the day do you take your Ibrutinib?
I am asking this because last year January/February I was having the symptoms of allergy - lightheaded, difficulty to focus, tired , unable to function - every morning at about 11 oclock, and it would last until about 6 pm. I thought it was my breakfast and in particular the walnuts I was eating with breakfast. We have walnut trees in the garden and therefore a lot of walnuts! I stopped eating walnuts and yoghurt and wheat. But the symptoms persisted. Then my GP suggested that it could be the Ibrutinib which I was taking straight after breakfast. My haematologist was of the opinion that it could not be the Ibrutinib, but agreed nevertheless that I stop for a few weeks. The symptoms disappeared! Then three weeks later I took Ibrutinib again and immediately the symptoms reappeared. My haematologist now clearly was of the opinion that it was the Ibrutinib after all and told me to stop with it. It was the intention to start with Acalabrutinib when necessary and he kept a close watch on me for 6 months. But in fact my blood counts are still excellent with everything in the normal range.
Maybe you can discuss with your doctor whether you could have a dose reduction or even a pause, depending on your present condition of CLL.
Of course you would not see an immediate reduction of your symptoms since it takes a while for it to clear from your body. A few days would not be enough if you are having a lot of problems at the moment of stopping.
And also you could ask whether you could have a gut microbiome analysis and whether there are alternatives to antibiotics.
I asked for an alternative to antibiotics right away when I started with treatment in 2017. My dr wanted me to take antibiotics ( twice weekly ) and an anti-viral. When I asked about an alternative to the antibiotics, he prescribed Pentacarinat inhaled with the aid of an oxygen tank. I took that once a month for several years. This was to prevent pneumocystis. He told me I could stop with both of the medications when my T cells had rebuilt to a healthy enough level. So now I don't take either. But I had a lot of antibiotics for covid, two skin cancer operations and a gall bladder removal. I do believe that that was detrimental to my gut health, especially in combination with the Ibrutinib.
I'm now on Acalabrutinib and have been for about 3 years. I was on ibrutinib previously for a year, which was changed when I started with all my stomach issues and swelling. I have to take one tablet in the morning and one at night and can't say I have any direct side effects, except I have always suffered from a lack of energy and diarrhoea, but that has been the case with both drugs. I can deal with those issues and accept them as part and parcel, but having daily pain is mentally and physically exhausting, playing havoc with any enjoyment of life.
Unfortunately, I do not have a very sympathetic haematologist, who only cares about how well I respond to his prescribed treatment. But it's the stomach specialist (we call digestivo in Spain), who is taking my general health more seriously, and whom I am seeing next week. So my intention, after reading about your experiences, is to discuss the antibiotics and if she would do a gut microbiome analysis as per your suggestion. Previously to all my bloating, I have always been a small boned and slender lady, and have often wondered if these powerful drugs have just knocked me for six? Perhaps that's a wrong assumption, but to compare my size to a 6ft, well-built male who may be given the same dose as I, seems a big ask on the body?
I send you my very best wishes, and thanks for giving so much of your time to my problem.
I think that is a wholly justified question to ask your haematologist. I too am not a big person ( 1m 59 cm ) and the full dose of Ibrutinib was clearly too much for me, My haematologist lowered my dose twice until it was 140mg six months after starting. This did not stop my stomach problems, maybe because in this same period I was having the antibiotic treatments mentioned above., but it did stop the really terrible skin rashes I was having. And I have done very well on the reduced dose!
To me it just makes sense that a small person should have a different dose from what a. big person has. But that is just my opinion and of course this needs to be discussed with your haematologist. It is a pity that you feel you cannot communicate with him. Is it not possible to find someone else, or at least have a second opinion? I live in Southern France and here they do allow you to get a second opinion.
It might reach that stage to request a second opinion, but for the 3 years, I have been dealing with other specialists and not relying on my haematologist. It was actually the digestivo who saw a pattern in my blood which turned out to show how poor my immune system was, and I was immediately put on monthly immunotherapy. This shocked me, because I would have thought the haematologist would have picked that up? But my priority now, is to sort my stomach out and then deal with what comes next in due course.
But who is prescribing the antibiotics? If it is your haematologist who is prescribing them, it would be important to discuss with him/her. I tend to think that a situation where you feel you cannot have an open discussion with your haematologist about the use of antibiotics, is not a healthy one for you.
I understand that we may need antibiotics as a preventative because our immune system is so impaired, but at the same time digestive illness like you are experiencing is not going to be good for your immune health either. Our gut bacteria do contribute to our immune health! You should be able to discuss this with your doctor. Maybe there are other possible solutions to boost your immunity - for instance monthly infusions of gammaglobulins, or as in my case Pentacarinat in aerosol form. Your doctor should be able to give you advice on such matters.
I really feel for you and hope some corner will be turned soon.
I agree, but my thoughts were, that if the Digestivo sourced what was causing the problem, their report would be forwarded to the haematologist, who would then have to adjust my medication. I guess, it was my way to get around the difficulties I have with him. I have taken on board everything you and I have discussed, and because I started this whole conversation with "I'm at my wits end", I shall endeavour to get the right people around me and if need be, ask for an opinion from another haematologist.
Since you already tried everything, the doctors can't help you and you have nothing to lose but everything to gain, here is what I would do in your situation. If you can only eat twice a day and not large quantities then what you want to eat is the most nutrient-dense and satiating food available on the planet. On top of that I would expect the food to be definitely not being suspected of causing allergies., easily digestible and the nutrient contents highly bioavailable. When it comes to my digestive tract I do not want to irritate it in any way. Therefore I would just for 10 days undergo an experiment. For 10 days only eat meat and eggs. And drink water. In order of suitability and quality: wild caught ocean fish, grass-fed grass finished beef, eggs, beef and pork liver, conventional beef, free range chicken, pork, conventional chicken. Strictly no dairy products. And that is your selection. No plant matter of any kind. No spices except salt. No alcohol, no coffee, no tea, the only thing to drink is water. Salt to taste. Take a magnesium supplement. If you decide to try this for 10 days please let me know whether you notice a difference. If any further questions, just send me a private message. Good luck.
Edit: if you are diabetic talk to your doctor first.
Thankfully, I am not diabetic, but I can not connect a food group to the horrendous flare-ups I have. Still, I will start taking more detailed notes and go through the process of elimination. I used to have an extremely healthy diet, but now I joke that I've turned into a fussy toddler and getting anything down me is an achievement!
It would be best to start the elimination diet from the bottom up. The bottom in this case is fatty meat. Literally nobody is allergic to fatty meat. And once you feel fine you can try to add one new food item every 2 weeks. And see how that single food item affects you. Check out the story of Mikhela Peterson on YouTube. She's an example of what food allergies can do to you. And how an extreme diet is necessary to fix an extreme condition. Good luck.
I donāt know if my experience is helpful. Iāve written before. After pancreatitis I had diarrhoea investigated for four years. I had checks for SIBO, coeliac, lactose intolerance, pancreatic insufficiency etc. Creon gave me some help but my consultant was still not sure as creon can help with other things than pancreatic insufficiency.
All this time I had CLL without knowing. The team kept telling me my high white cells were reactive and my raised inflammatory markers too. I was essentially diagnosed by a referral to a colorectal team who didnāt feel comfortable doing a colonoscopy with such a high white count. A scan found large spleen etc.
sorry for the waffle! After being diagnosed with CLL and continuing to have high inflammatory factors I was still worried. Because of a very strong family history of coeliac disease, including unusual forms, I decided to cut out gluten, as I was frightened of the high inflammation. At exactly 6 weeks all my symptoms disappeared! No more diarrhoea! My pancreatic team said to assume I was coeliac because I was unwilling to go back on gluten.
It sounds like you have not had gastroscopy and biopsy so donāt try stopping gluten until you speak to your consultant.
For any biopsy to confirm coeliac, you have to be on Gluten. Then when you stop, you have to be patient, it takes at least 6 weeks.
When a blood test is done for antibodies to gluten, they have to do a biopsy if you have low IgA, as the blood test doesnāt work. I didn't have a biopsy all those years ago because my IgA quantity was ok.
However, unknown to anyone, I already had CLL and I think my IgA was dysfunctional. So I think the test was negative.
I have never had diarrhoea since 6 weeks after I stopped gluten. But if I consume the tiniest bit of gluten I have diarrhoea and incontinence within half an hour! (Sorry for the information!). Itās almost like my body says ādonāt you dare!ā. I found I could tell when something was contaminated with gluten from this side effect! Weirdly I found that two of my vitamin tablets were contaminated, and was fine when I swapped to a confirmed gluten free one. Might be worth discussing my experience with your gastroenterologist.
I also had to stop the creon when I stopped the gluten as they started to then cause side unpleasant side effects. Almost as though they knew they werenāt needed as my guts returned to normal.
Thank you for explaining your experience. I have had a gastroscopy done twice, and I am going back for the results of the biopsies taken recently. Nothing so far has suggested coeliac, but I will bring this up with the doctor, and I'm glad to hear you have yours under control.
I took a nutritional class years ago. I remember learning that as we age our digestive track can become more sensitive to foods. When I was younger I could eat everything I wanted. As I aged I developed a lot of sensitivity to certain foods. My sisters who are twins, 4 years younger, have also developed some food intolerances. I saw a functional medical doctor years ago who did nutritional testing on me. I was surprised to see all the foods I had developed intolerances to. In addition I went through testing years ago and was told I have IBS. Before the testing I would experience a lot of stomach pain and bloating. Therefore I try and stay away from my trigger foods. I just bought organic low acidic coffee that is more gentle on my digestive tract. Before I go to bed at night I take digestive enzymes to help my digestive track when I sleep. That is my experience. It may not relate to what you are going through but it may help. I wish you luck finding answers. I know how frustrating it is not to know what the root cause is. Take care!!š„°
I read the suggestion from CLLerinOz about dose reduction. I am having a different issue, on-going headaches. I was going to ask my oncologist about a does reduction to see if that may make a difference with my own issues. It's worth a try. My heart goes out to you. I hope you can get some answers soon and your symptoms can subside. š
So sorry for your discomfort. It is frustrating to be turned away from each specialist without answers. You are doing well being your own advocate - so keep trying! There is a reason and an answer - it just hasn't been found yet. I don't have any experience with stomach issues on treatment other than acid reflux but I wanted to reach out in support. You are not alone.
Everyone's response has been quite overwhelming and a surprising comfort, so truly, thank you for taking the time to write. I have noted down all the points to see if I have missed something and will present them to the doctor, but must say here, what a wonderful community this is! x
If you have had any gut surgeries where a section is removed, they do not have much success reattaching the severed nerves. So the stomach, small intestine or large intestine stops communicating with other portions of the digestive system as effectively.
I've only had biopsies and the last time, 9 polyps were removed. I was in pain down my left side for 3 days, but that has gone now. although the usual lower pain remains.
My GI issues were different to yours but the only thing that brought me any relief was a dose reduction and a switch from morning to evening dosing (I take a once a day BTK inhibitor).
As you're now well into your treatment, if you've tried everything else except a dose reduction, it might be worth discussing that option with your CLL specialist.
What youāve described sounds awful; I hope you get some relief soon.
I personally stopped the BTK that was making me miserable. I had a very very restrictive diet in trying to manage the near constant diarrhea. The drug was working well, and that doctor gave me a lot of pushback on stopping it. In retrospect, I wish I had stopped it sooner. But the GI on top of skin problems had me miserable.
Is it possible to consider another agent? Quality of life is very important. Just because one or more agents cause problems, doesn't mean all of them will. Some of us have to try a few more things than others, before finding something that is working well without a lot of adverse effects.
Thank you, and I agree, the quality of life must be considered. I have had this now for 3 long years and have felt unable to take the long journey to Costa Rica, where both my girls and my grandchildren live. I think that even if I could survive the flights with my swollen stomach, my fear is, on the back of it, I might take ill when I get there? So yes, it does play a massive part on my mental health. I hate using that word, but you know what I mean?
Yes I do. Physical things that affect us greatly also affect our mental health adversely. In the US, physical side effects of medication that interfere with our ability to function in a relatively pain free state and go about our lives, is said to be affecting our Quality of Life.
Nowadays, a drug treatment that is interfering with one's Quality of Life, even though otherwise working, is a good enough reason to switch to something else, at least in the US. 20 years ago we were sort of expected to suffer through whatever, but that was in the days when there weren't other options. If you can't visit family because your treatment is essentially keeping you homebound, and since now there are other options available, you should be able to argue that as a basis to switch treatments again.
Please investigate this, don't continue to be miserable. Like I mentioned, my doctor then put a lot of pressure on me not to stop. But I just couldn't stand it any more, I basically was stuck in bed or on the couch.
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