Anyone have digestive issues after treatment?

[jra40]

Hello all - I am really needing advice on something that is just eating me up inside. Sometimes I feel trapped in my brain with all this anxiety from breast cancer!

I am now 3 years out from my triple positive diagnosis and it will be two years in March since I finished all my treatments. I started to have constipation in September of 2012 and have lived on laxatives until last week when my whole digestive system went awry. In that time, I had a biopsy of my uterus for thickening and polyps removed that developed. I also now have a nice cyst on my right ovary. All tests came back benign and every doctor I talk to about my digestive issues seem to just push me off.

I have been having extreme pain in my lower abdomen and my right side. I am now having diarrhea everyday (sorry to be so graphic) and I am in panic mode! I'm seeing the GI doctor yet again today but not confident he is going to help me.

Anyone have similar issues? I am on Tamoxifen so could that be the reason I am having problems? My body is in pain everyday and I have to take Motrin to get by. I still exercise and try to be as positive as I can but it's been so hard when no one seems to care or listen.

Thank you for listening to my issues - I have to say I am so angry right now losing Denise and all the others. I don't want another doctor to tell me how it's good to be Her2+ with all the drugs we have available. They still have no clue how evil this disease really is!!!

Love to all - Jessica

[Jackie07]

Hi Jessica,

Sorry you have been suffering from digesting issues. Have you been able to maintain a normal weight?

Surely the GI doctor will give you some good overall check and help you solve the puzzle. I had started eating yogurt everyday after finishing treatment in 2007. I also put flaxseed in my breakfast oatmeal every day.

Let us know the result of your appointment.

Sending you good vibes.

['lizbeth]

Jessica,

Let us know how the visit to the GI doctor goes. I'm wishing for you that this doctor has the experience and training to help you get your digestive tract balanced again.

I hope the pain is a symptom of something easily fixed - you've been through enough. I have to say that my endometrial biopsy was excruciatingly painful and the pain lasted for months. I hope you didn't get an infection from the biopsy.

I understand your grief over losing our precious Denise - she was a joy.

[jra40]

Hi Jackie! Thank you for replying. Yes, I have consistently stayed at the same weight since my last treatment, no more or no less, which is frustrating since I gained 30lbs since treatment. I do a protein shake every morning with flax seed in it and tried every fiber food out there. It is just so strange. It all started when I was on Taxol but I went to some normalcy after then started into constipation last year. Cleveland Clinic told me it's damage from Taxol but I am not convinced. Really hope they order some sort of scan. My oncologist will not approve a PET scan for me to ease my mind. Getting worried that it may be cancer related but my blood tests come back all normal. Can they tell if the cancer has spread just from the blood tests they run?

[jra40]

OMG Lizbeth, you are so right on the biopsy - I have never felt pain like that ever!! I told my gyno she is never allowed to do that to me again

['lizbeth]

If you cannot find relief from mainstream medicine - try an acupuncturist. Diarrhea is "rebellious spleen qi" which is supposed to rise, not descend. The constipation was a disharmony in the stomach meridian. These organs are associated with the earth element.

Grief (losing Denise) affects the metal element and the organs associated with metal are the lungs and the large intestine. So the grief could also be causing a disharmony in your colon.

If you want to know more you can Google 5 Element or the 5 phases. I find it fascinating.

Back on the western front of medicine, when you tried all this fiber I hope you drank a lot of water. Adding fiber without adding enough liquids creates constipation. Ouch!

I had the opposite situation with Taxotere - I knew where every restroom was before I went anywhere, and I didn't eat if I wasn't going to be near one, lol! My issue was from low potassium - supplements restored the balance in just a day or two. Lucky for me I had a sharp nurse who did a CBC and figured it out.

Well you are going to the GI doc, who I suspect will order some additional tests - and you'll need a sense of humor for these, yikes!

I had a Pet done at the end of treatment. My doctors seemed to be more indulgent at keeping my peace of mind thankfully.

Since the trouble started after your recent biopsy and treatment - it might be related, or might not. I hope the GI doc came get it all sorted out for you.

[BonnieR]

What bothers me about your situation is your doctors lack of empathy. They should be working to relieve your concerns and get to the bottom of what's going on so you can get treatment and relief. Be the squeaky wheel. They are supposed to be working on your behalf. You might need to find which one on your team is the most likely to be proactive. Maybe the oncologist will order a test that the GP won't. That sort of thing. Do an end play if you have to
And isn't there medication that can offer relief until you get answers?
Keep the faith

[suzan w]

I have had constant GERD...heartburn since chemo. I take zantac

[Becky]

Although I am fine, I have a 22 yr old daughter (who lives at home with us) who has had issues for the last couple of years. When we found out she has gluten intolerance, we were overjoyed but that did not solve all the problems. GI doctors were also terrible to us too. She had an endoscopy, colonoscopy, CT scan, barium CT, CT with and without contrast and tons of bloodwork with no results. She is constipated but when she "goes" its diarrhea. One doctor said that young women who are in the peak of hormones can get impacted (this impaction was true for her). Another said that the nerves in her colon might not fire correctly so the colon doesn't move the stool down and out right (meaning there is little movement and then the nerves shoot into overdrive).

Here's what has helped her:
1. Phillips Colon Health - a probiotic which she takes everyday. It took a couple of weeks to see results but sometimes the good bacteria are so out of wack. This could help but certainly won't hurt.
2. Some of the best foods for us can cause other problems. She is careful with the gassy foods like broccoli and beans. She will eat them but not tons therefore, she doesn't juice or do smoothies with these items but eats them sparingly.
3. We got food allergy testing but do not know the results.

When thinking what I know about her and I think about you, Taxanes do affect the nerves. Most of us have some neuropathy in our hands and feet from this chemo and it can last a couple of years. Maybe Cleveland Clinic was onto something saying your colon nerves were affected (as our doctors mentioned this about my daughter - this can also be a sign of IBS but everything is IBS if they don't find another cause). Also, the hormone thing. You might not be 22 but you are premenopausal and having an ovarian cyst and other issues. These issues are also hormonal in nature. I am just thinking out loud here but I think some of these symptoms will be relieved with time. It could even be the Tamoxifen as it is kind of hormonal but I wouldn't go off of it without other options. Just throwing out ideas since I am doing the doctor rounds with my daughter and your case sounds so familar unfortunately. For her, Metamucil was pointless but Miralax helped a bit but she didn't want to stay on it indefinitely. The probiotic and watching dairy and gassy foods did help. One day a week ago or so she had what she though was a normal poo and made me look (what we do - ugh) and it was! She just hadn't seen one in years and wanted to make sure. We are hoping the food allergy testing will uncover something but are not hopeful but the gluten was real and started to make a better life for her because that was also causing vomiting which is gone now. If I think of anything or if something comes up with her allergy testing I will let you know. We see the GI doctor again for a follow up Jan 6 and if anything new is said that might help you, I will let you know.

[Aussie Girl]

Dear Jessica,

I think this needs further investigation. You should be having a colonoscopy with biopsy, I think, without knowing the full story. Unfortunately some laxatives cause damage the bowel long term, depending on what you were using. I assume you are doing the usual things of exercising, staying hydrated, eating soluble and insoluble fiber, using a modified squatting posture when at the toilet (rest you feet on something that raises them 6 or more inches), avoiding excessive straining etc

Diverticular disease is something that comes to mind. Recurrent cancer wouldn't be near the top of the list or causes. If nothing gets found at colonoscopy, it might be irritable bowel syndrome, and if so you might consider trialing a low FODMAP diet http://www.med.monash.edu/cecs/gastro/fodmap/

take care

Aussie Girl

[jra40]

Thank you so much ladies for all your feedback - I am so glad I have this support group. They ordered a blood test to look at my kidney function and a CT scan of my abdomen and pelvis. He thinks it's IBS but wants to make sure. I'm glad he's being proactive - finally someone is!!

I'm beginning to wonder if it could be food allergy related so I signed up to meet with a nutritionist in January. I'm going to test that theory with the gluten-free diet in the next couple of weeks to see if that helps. Bad thing is the holidays are here and I love to eat!!

Aussie Girl - thank you for the link On FODMAP, really interesting! If the IBS diagnosis plays out then this could really help me.

Becky - I will look into the Phillip's Colon Health at my local vitamin shop. I have to laugh at you and your daughter looking at a normal poo. The last time I had one, I told my mom all about it like it was a special award I won!

Guess we have to celebrate the little victories in this battle

Jessica

[tricia keegan]

Like Becky, our daughter too had issue's which were resolved when she went gluton free, I had tummy issue's after my treatment and had an endoscopy showing a Hiatal hernia and I still take a Nexium daily for that and have changed my diet a little. I hope you find answers soon but it doesn't sound cancer related to me at all so try not to worry.

[norkdo]

I'm with Bonnie on this. Please push on the testing. You can get a celiac test kit from the drugstore. They can order one in if they don't have one there currently, so you won't have to wait the two weeks of trying gluten free to guess at the effectiveness. But do hammer down the door of GI or try a different doctor. Keep going.
I too have been experiencing the abominal pain and stuff you are, lately. Am getting testing soon. It feels like a swollen organ in my mid abdomen.

[KDR]

Hi!
Have to see you in PGH! And I will! Remember, we tried...
OK. I would push for the testing. My gyno put me out for the biopsy, said I'd been through too much...I love her. I believe there is a way to undo everything and we can fix this.
(For every action, there is an equal and opposite reaction). Please keep us posted.
Love
Karen
PS In addition to flax, I added Chia seeds.

[roz123]

Jessica
unfortunately I find most doctors use IBS as a catch all for all digestive issues that they cant figure out
I don't think its tamox - although who knows, ppl react differently to every drug.
I agree with aussie girl - get a colonscopy to rule out anything sinister and go from there
you know the more I read about peoples issues after treatment the more I think all the collateral damage is really underplayed by everyone, the oncs, gp's etc.

[BonnieR]

Roz," collateral damage" is really the perfect term! We all have some, in varying degrees. And it is often minimized
Keep the faith nonetheless!

['lizbeth]

I say skip the gluten - it is a major cause of inflammation and the test for Celiac disease only addresses one specific intolerance.

Acupuncture is a good option. I'd get everything checked out by the GI doc, but why suffer if a good acupuncturist can relieve the diarrhea?