22-09-2016 02:51 PM - edited 22-09-2016 02:52 PM
Thank you for your help! I have been on Tamoxifen as a preventative measure for 7 months and I have been having terrible IBS especially around my period. Happened right after I started taking it and my doctor said he had never heard of this happening. I am going to try to lower carbs as well and see if that helps.
28-07-2016 03:43 PM
Snap.......a lifetime IBS sufferer here, but generally coping fine with it and mostly under control. It's gone into over drive with tamoxifen ( 4 weeks on it now); huge amounts of wind, bloated stomach and bad bowel pain, 'going' hugely more than I used to .....you get the idea. I saw somewhere else about trying probiotics to see if that helps, so that is my next port of call. I would be interested to hear what they suggest for you.
28-07-2016 03:16 PM
I posted about stomach cramps a few days ago. I started Tamoxifen 2 weeks ago and after 4 days had terrible stomach cramps dashing to the loo and sometimes sick. Always around 5am. It made me feel tired and without energy all day. After a week I went to the GP and she said try stopping it. Within 2 days no symptoms at all! So a definite link. I am waiting to hear what they'll suggest next.
20-07-2016 05:47 PM
I too had excoriating IBS while on Tamoxifen and could find nothing about it on the web or from the nurses or doctors at the Dana Farber here in Boston, which is considered one of the finest cancer hospitals in the world. Go figure. That was six years ago, and I still see very little posted on the web about this common side effect of Tamoxifen. So I'm posting my experience on a number of boards in hopes of getting the word? Here is my experience and what I learned from it.
I have always suffered from IBS, but three months on Tamoxifen pushed it through the roof! What had been a chronic, manageable issue had become acute. I hit the web and found a promising description of Bacterial Overgrowth of the small gut. Stopped eating carbs -- my pain stopped by the end of first day.
After more research I discovered that Tamoxifen floods your gut with estrogen, just like when you are pregnant. Estrogen in your gut slows your digestion down so you can absorb more nutrician for your baby. And since normally your small gut is ALWAYS moving to push the bacteria in your food through quickly, making your small gut too slow can lead to the bad bacteria multiplying. Most of those bad bacteria eat carbs and create huge gas which leads to terrible IBS. So cutting off their carb supply means no more gas and pain.
I stopped the tamoxifen (I'd had stage 1, grade 1 lobular -- clean margin lumpectomy, nothing in nodes, low risk). After a a diagnosis of bacterial overgrow and a year of no carbs ( I lost too much weight believe it or not) I was working my way though useless antibiotics because the big gun I needed (Xifaxan 550mg) was $3,000 for a full dosage and BC/BS wouldn't cover it until I'd tried the cheaper antibiotics. Then I got a bag stomach flu which triggered a volvulus (full twisting of the gut) which is about 1,000x more painful than childbirth plus life threatening. Rushed to hospital in ambulance, gut untwisted on its own suddenly, many hours later, I was allowed to go home and meet a surgeon the next day. Had the surgery to correct a previously undiagnosed birth defect and finally got the Xifaxan to fix my bacterial overgrowth.
Turns out one of the main underlying cause of my chronic IBS was a partially mal rotated small bowel. This is a very common, undiagnosed birth defect. The much improved imaging we now have is making the diagnosis more common. A fully mal rotated small bowel is the birth defect that causes newborns to be rushed into surgery after projectile vomiting their first meal. My partially mal rotated small bowel created a narrowing in my gut which slowed my digestion down and lead to gas and cramping. The tamoxifen slowed it down even further, leading to the bacterial overgrowth and the volvulus.
And now my IBS is practically gone! I still have a cranky gut, which does cramp and spasm on occasion, but basically it's better than it has ever been and what issues I do have are totally manageable.
So Tamoxifen can easily trigger serious IBS in women taking this drug. Doctors and nurses take notice!! Anyone suffering can stop carbs for a day to see if carb sensitive bacterial overgrowth might be the culprit. FYI, even after a year of no carbs and an operation to fix the narrowing in my gut, I STILL needed the Xifaxan to kill the bacterial overgrowth. It wasn't until after a full course of Xifaxen that I was finally able to eat carbs again without pain.
To any woman struggling with IBS while on Tamoxifen, keep trying to get the help you need! The only thing more complicated than your gut is your brain, so don't get discouraged if the problem is multilayered. Good luck!!
05-01-2016 05:17 AM
04-01-2016 03:29 PM
I first took Tamoxifen in April and for the first month I had terrible bloating and indigestion, it gradually got better, however, I am permanently on Omprazole as I take tablets for arthritis that cause stomach problems. This last month or so, I have had constant indigestion - heartburn or worst of all terrible bloating. I had some fantasy that I had an ovarian cyst that was pressing on my stomach. But reading this I think it is probably the Tamoxifen. And, of course, I have put on a lot of weight since taking the tablets which does not help at all. I am going on a Weight Watchers Diet next week, so I am hoping that will help me.
However, it is great to read about Acidopholus - I will get some and try that as well.
You think once your treatment is over that it is onwards and upwards but I feel like I have aged 10 years, have constant digestive problems, tiredness and sore breasts. When is it all going to end?
12-01-2009 09:42 AM
Thanku for ur response and advice and yes I will ask one of the team the question.
Good luck with ur change of brand and I do hope it relieves ur SEs.
11-01-2009 11:22 PM
Probably someone medically qualified should answer your question but I don't think it would be a problem taking acidophilus while on chemo because it is just what you find in live yoghurt or Yakult/Actimel. Anyway it is probably worth checking with someone qualified just in case.
Good luck with everything.
I have just changed from CP Pharmaceutical's Tamoxifen to APS brand (on another thread some ladies said this was better). I will report back when I have taken it for a couple of weeks!
10-01-2009 08:32 AM
Hi Maude, LindaH and everyone
Have just read your thread and I too have been feeling queasy and bloated on Tamoxifen (been on it since dx on 1st Dec).
Really interested in the acidopholus you've both recommended, but can you take this while on chemo? - I'm due to start FEC on 21st Jan.
Many thanks ladies for this interesting thread
28-12-2008 09:17 PM
Just wanted to let you know that I bought some acidopholus after you suggested it and it has improved the symptoms of queasiness I was getting from the Tamoxifen - my stomach feels a lot more settled. I couldn't get to Holland and Barrett so I bought some from Boots, they were a bit more expensive but I am glad I got them now.
14-11-2008 10:40 PM
I ended up having to go back to gp today as pain was so bad this morning it scared me! He has also given me an anti-spasmodic which thankfully has made things a lot better. He said my symptoms sound like irritable bowel syndrome and to see how I go with these meds and go back in a couple of weeks.
I've been on Tamox almost three years now. I had very few side effects, just irregular periods and the odd hot flush until this year. Now all hell seems to have let loose - I had a monster heavy period then had to have a hysteroscopy and d&c - this left me anaemic so I had to take iron for 3 months. Thankfully that has corrected but now have more hot flushes and this terrible digestion. If it's the Tamox that's causing it I'm not sure I can put up with this for another two years. Hoping that it's just a one off and will be sorted by these meds.
14-11-2008 02:56 PM
I started Tamoxifen July 2007. The first few months were awful, my stomach was in turmoil all the time and indigestion like no body's business.
I also found that certain foods didn't taste like they used to and even though I was hardly eating - because I couldn't taste anything except spices - my stomach was still bloating, so I tried Acidophilus (Aci what I hear you call !! ) well, it's a stronger form of the good bacteria like you find in yogurt drinks, but it has millions more than in yogurt drinks, so I take one everyday and the bloating stopped within days and I feel fine now.
I bought them at Holland & Barrett about Â£6 for 100 capsules.
I was also given Omeprazole, but I only take one when I need them because they upset my stomach.
I do still get a little heart burn, but nowhere near as bad as when I first started on Tamoxifen.
The symptoms do lessen with time, so it does get better.
14-11-2008 02:37 PM
I also seem to be having almost constant digestive problems . But it may not be tamoxifen! I had tam + Zoladex for two years and since last year have just been on tam with nasty side effects like painful breasts and now this bloating, pain and flatulence ( not nice!)
I am going to try enteric coated peppermint oil capsules before I go to GP because I dread another raft of tests having had to have investigations for thickening of endometrium last year.
Hope the omeprazole works. How long have you been on tamoxifen?
13-11-2008 08:58 PM
i was wondering whether anyone has experienced digestive problems whilst on tamoxifen?
Over the last few months I've been a bit more prone to indigestion, bloating etc. I started to feel a bit sick when I took the tab in the morning so now take after dinner in the evening. For the last few days I've had terrible indigestion and abdominal cramps and nothing seems to help. The discomfort is more or less constant at the moment. I went to the GP and she says everything feels ok and has given me omeprazole to reduce the acid. On checking the side effects she said the Tamox can cause gastrointestinal disturbances but it wasn't specific what exactly they are.
It would be helpful to hear of others' experiences.