Need some advice about diahhrea

dawn7767 said:

Mollymaude,

Mollymaude,

I wish some of the doctors would read all these post.  How can they say that our symtoms are not from the treatments when so many of us have the same issues?  I'm just trying to figure out what meds to try with the diaherrea.  I am currently taking Viberze which has helped but some days I probably take more than what I should. I have to get sample packs because this medicine is $1000 per month.   I have a big issue lately with uncontrollable bowels.  

Does anyone have any recommendations of other meds?

 

 

I am 25 years cancer free, had 32 radiation treatments and chemotherapy also had one doctor cut into my sphincter muscle because she thought it was contracting not knowing it was actually a cancerous tumour. I have had diarrhea for about 20 years now, told it was IBS but I am sure it was cause by radiation damage. I have had great relief from taking Caltrate (calcium carbonate) with meals. I take only half with a light lunch and a whole one with a larger meal. It is by know means a cure all but it really has helped. 

Fengshoe said:

Probiotics

Has anyone with diarrhea issues tried probiotics? I took fiber and probiotic pills daily for the first year after treatment ended. Now, after 4 years out from treatment, I only take a couple of fiber pills every day with my other vitamins. I finely found a FiberCon fiber pill that don’t cause so much gas. I usually only have 1 bm a day after my biggest meal. I really think that the radiation changes the gut biome, and for me I tried to heal that along with the other internal and external anal areas. Let me know if anyone else has found that probiotics help.

i haven't tried probiotics but i am thinking of trying them. i believe our gut has to be nurtured & soothed forever after treatment as it has been burnt badly. i have found taking bentonite clay helps. it is recomended to take x1 teaspoon in a glass of water a day for a month. then take if you feel like you are heading towards diarrhea or have had it. . take 2 hours before or after any other medications or vitamins. i have found certain foods can still cause diarrhea so if i get diarrhea badly i take x2 loperamide 2mg straight away as i have learnt it won't go away and some bentonite clay as well. i have learnt it is best to add the clay to the water and whisk it.  foods that make normal people regular can make me have diarrhea. i have also learnt it is really important to get your vitamin b levels checked continually after treatment as the radiation can damage the part of the gut that aborbs the vitamin b. 

What Does Bentonite Clay Do? (webmd.com) 

HI- Just discovered this site when looking up issues with stiffening hips... Finished 31 Radiation treatments and 2 five day chemo rounds Nov 17 2020. My bowel salvation - for those heading to or in treatment was powdered slippery elm morning and night. I also did a host of other natural remedies... but that was the most constant. And turkey tail mushroom powder. This helped me avoid the steroids, extra meds for vomit/nausea etc. My bm's are regular now (although different than pre-treatment) and I stopped the slippery elm soon after treatment. It helps regulate too runny or constipated and may help those still dealing with irregularity. It also coats and soothes your mucousol lining (throat to bum). It took about 6-8 weeks for me to be able to mostly digest a healthy, fibrous diet. I do still have some odorless gas/mucous that's annoying but no complaints!  I eat sauerkraut and kimchi regularly as well.  The hip thing just started setting in (I stretch but will get more serious with that now) and I'll head back to that thread...

I highly recommend a naturopath/integrative onc to help with short and long term side effects and to remain cancer free. I'm scheduled for first Pet scan post treatment this week. Hope to hear NED in the very near future! 

Deendee2020 said:

I'm new here Pet Scan last

I'm new here Pet Scan last week told by Dr "something there but it did not spread get appt with protologist"I'm in shock after 3 months of radiation 5 days a week and 2 5day Cisplatin balls in a fanny pack I'm not told what the comparison to Sept Pet Scan is. Constant constipation take mrlax than loose. I feel abandoned my oncologist who I was to see for the result sent her nurse asst in to tell me the above than when I was making appt for next month she appears talking to me about my nice mask that's it I left there Fri and cried all weekend it was like a revolving door visit

Hi,

First off BIG congratulations on completing this treatment, we ALL here know it wasn't easy! I bet you were looking forward to a more detailed follow-up report (I always am) albeit fingers crossed for good news, and I am so sorry you did not get the attention you much deserve.

I often remind people that your doctors work "for" you and that means regardless of how they are paid (out of pocket, insurance, state, etc.) look at them as your employee and if you need to fire your employee you have a right to do so. Its sad but we often need to advocate for ourselves. I have been lucky to have not been in that situation and have a medical team that I highly respect and continues to give me answers and time even 10 years post my initial dx. (I have had a couple recurrances but same quality of care)

It should not make you feel bad to seek a second opinion at any time during this whole process...whether in diagnosis, treatment, or follow-up. I have done so and am happy I did and my doctor was on board as well!

Would that be an option for you? Is there another oncologist who you could schedule an appointment with to further explain the results of your recent follow-up scan and to compare your earlier one? However, a proctologist may be of some help in diagnosing the "something there" and be able to refer you as to what to do (if anything) next. It is often the case for scar tissue to build up and it may over time diminish a bit but will best be determined by having an anoscopy with a colorectal doctor trained in this area.

The oncologist job is sometimes more like the scientist or chemist that comes up with a formula of drugs or other treatment combinations to manage the disease...in the best case he or she will follow-up with details and explanations like you (did not) receive, but I have heard of others who like you have been passed on to another doctor after treatment has ended.

Please keep in touch and continue to persist until you get the answers that you deserve!

I will be thinking of you as you move forward and praying for clarity and health.

katheryn