Connect
Rectal cancer and tenesmus (urge despite empty bowel) - any relief?
Hello. My wife (53) was diagnosed with stage IV neuroendocrine rectal cancer last November. It had spread to her liver. She did 6 treatments with carboplatin/etoposide then moved directly into a biweekly Folflox chemo plan (6 month initial plan) since the PET scan showed some improvement but some of the spots in her liver were more active as well as her rectal tumor. She got through 3 treatments of Folflox but then was having bad diarrhea and bloody discharge. They determined she had a C. Diff infection and stopped the chemo and started antibiotics. During this whole process, she has had major issues with a constant urge to defecate at all times of day and night. They tried many different medications, but a recent sigmoidoscopy determined that her rectal mass was sagging further down into her rectum causing the pressure and the tesmesus (urge to poop).
Does anyone have any experience with tesmesus or any suggestions to provide relief? We have tried preparation H with lidocaine, all sorts of prescription diarrhea medicines, warm compresses, etc. I have a donut pillow coming tomorrow, but I am not sure what else to try. She is miserable and has lost 10-15 pounds the last 2-3 weeks. With all of this, her recent PET scan showed that the liver spots have increased and her rectal tumor has grown (no measurements in the recent results., it was 4.5cm). We meet with the oncologist and a radiation doctor tomorrow to discuss the recent PET scan and options. They have her scheduled to restart Folflox as well tomorrow after only missing one treatment. The oncologist and the anal surgeon both said that rectal surgery would not be advised given the aggressive nature of the neuroendocrine cancer because she would need to stop chemo treatments.
Looking to try anything to help her get out of bed and hopefully out of the house to enjoy life more. Any thoughts?
Like
Helpful
HugInterested in more discussions like this? Go to the Colorectal Cancer Support Group.
Connect
I know you said she tried all different medications and nothing helped but has she tried lotomil?
I tried everything to relieve diarrhea until a friend told be about it. worked better than what the doctors suggested.
-
Like -
Helpful -
Hug
1 ReactionI take 2 turmeric capsules of 1500mg with a meal with some fat (for absorption). It helps with inflammation. Before being told about the turmeric, I applied icepacks to the perianal area. And I practice anal-centered Kegel exercises.
In a group for people with Low Anterior Resection Syndrome to which I belong, tenesmus is a frequent subject. For some taking 2 capsules of Enteric coated peppermint oil has brought relief. Some take medical marijuana, other take Diazepam; others take Baclofen, others are prescribed hydrocodone or oxycodone or tincture of opium. Some apply Calmoseptine after each bowel movement. Others apply lidocaine or CBD ointment. Some say sitting on an exercise ball helps sometimes.
I hope your wife finds something that works for her and gets better soon.
Thanks for the suggestions. She is now struggling with her new chemo (irinotecan) since she is a poor metabolizer. Her urge to go is not related to diarrhea or bowel movements. Her rectal tumor hangs down into an area where her body thinks she is ready to go the bathroom. All day, every day. I think the inflammation suggestions make the most sense but she starts radiation this week to hopefully shrink the tumor some.
-
Like -
Helpful -
Hug
1 Reaction@danny11, I also added your question to the NETs support group https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
That must be uncomfortable to have physical feeling of needing to have a bowel movement, even if the colon is empty. Inflammation or pressure from the tumor do seem to be the most likely causes. If it is pressure, then hopefully the radiation reduce the tumor and relieves the pressure point.
Have they checked for inflammation? How is radiation going?
@danny11 How did your wife's first radiation sessions go? How is she feeling?
She finished 5 days of radiation which compounded some of her issues and moves right into the next round of chemo. Unfortunately, there has not been much improvement yet but hoping things change some after this round of chemo side effects subside.
-
Like -
Helpful -
Hug
2 Reactions