Persisting abdominal pain, bloating, gas, clustering

Posted by mardee313 @mardee313, Dec 30, 2022

Hi everyone- My husband was diagnosed with T2N0 rectal cancer in late 2017. He underwent chemo and radiation treatment prior to his robotic taTME TATA surgery in early 2018. After a second round of chemo (he is/was young at diagnosis- early 40s) he had an ileostomy reversal at the end of 2018. In both surgeries extensive adhesions had to be removed (due to childhood surgeries and natural disposition towards creating adhesions). His appendix and gallbladder were also removed due to adhesions. Since then, my husband continues to struggle with ongoing debilitating bouts of abdominal pain, bloating and gas. He also occasionally has nausea and once or twice vomited during these episodes. His surgeon and oncologist don't have a good explanation for what is going on and instruct him to go on a clear liquid diet only until the episode passes. Rarely they last 1 or 2 days, but usually last many days (5 or 6) and sometimes as many as 8 or 9. Generally, over the years they have become less frequent, but he still suffers from these attacks almost monthly. When they occur, he usually uses a heating pad, takes gas-x, soaks in a hot bad and lays down. At times he has been too sick to drive home from work or coworkers find him lying on the floor in his office.

He can't seem to pinpoint what sets him on these episodes or how to cope/deal with them. He has eliminated many foods (broccoli, cauliflower, beans, lentils, creamy sauces) from his diet and limits others (greasy, fatty or fried foods). He has switched to lactose free milk and takes a supplement when he eats icecream or cheesy foods. His primary care doctor wants him to take red yeast rice for his cholesterol. He is able to tolerate a lower dose but was unable to tolerate increasing to a larger dose as the doctor requested since it aggravated his GI symptoms. Sometimes it resolves abruptly for him without any real cause/reason why or changes in bowel moments. Other times it will resolve only after evacuating unimaginable amounts. And yet still other times, only after diarrhea or episodes of clustering. He is thinking that continuing to eat (very small amounts of plain, easy to digest food) could help prevent additional gas from building as a result of an empty stomach/bowels. Because of his history of adhesions, he is also always very worried about obstructions. After both of his surgeries, he was in the hospital a minimum of 10 days (with another visit in between) because his intestines had a hard time "waking up" and a lot of difficulty working in a coordinated manner. We wonder if sometimes his intestines get out of sync?

Has anyone else experienced this? If so, do you know what causes it or what can be done to alleviate or shorten it? The surgeon thinks this is just a part of the healing process and says his "normal" will be functionable and tolerable, but not like anyone else's normal. The oncologist wants to help and has written a script for an xray but when the episodes happen, he is unable to get into a car to get to the hospital and doesn't want to be taken by ambulance.

Any thoughts, sharing of experiences or advice would be appreciated more than you know. I am desperate for him to feel better and get back to living a more "normal" life that isn't paralyzed by these episodes or needing to be near a bathroom.

Interested in more discussions like this? Go to the Colorectal Cancer Support Group.

kerryos | @kerryos | Dec 30, 2022

Hi Marder, I don't have any answers but am asking the same question though I have only just begun my journey & haven't had treatments yet. I am taking a lot of supplements & thought one of these might be causing the very painful & monstrous amounts of wind, but doesn't look hopeful if your husband is experiencing something similar & he's already had so many treatments.

bea1972 | @bea1972 | Dec 31, 2022

I have felt that pain! Like your husband, my first colon cancer surgery (lots more since) was when I was just a few weeks shy of 45 (had brain surgery in late 30s - thank you Lynch gene). Anyway, I healed great from the first surgery but 12 days later ended up in the ER with a blockage from adhesions - and experienced the ever-dreaded NG tube and another surgery. I've had subsequent surgeries and faced what your husband is dealing with a couple months ago. I take zero pain killers, eat no processed food (except lots Greek plain non-fat yogurt) and watch what I eat. I know the foods that my adhesions and body won't accept. This is limiting, but has kept me pain free for two months. I walk lots and lots and workout (at home) regularly. My biggest word of advice is to eat small frequent meals, drink lots of water, stay very physically active, and avoid anything with seeds, stems (lots of mixed greens have stems), lay of the floor and hold legs in a "happy baby" position - this will actually do some great things for freeing gas (just make sure no candles are lit).

Teresa, Volunteer Mentor | @hopeful33250 | Dec 31, 2022

Hello @mardee and welcome to Connect. I can tell from your post that your husband has experienced a lot of discomfort as a result of his surgeries. It certainly does take a while for the digestive tract to find it's new normal. Given his tendency towards adhesions, I can also understand his fear of having a blockage. I have had three surgeries of the upper digestive tract and have many of the same symptoms that come and go.

The one suggestion I might make is for him to keep a daily journal of foods, drinks and physical activities as well as stress to see if he can begin to find a correlation between the painful symptoms and events in his life. I've found many such correlations and perhaps he will as well.

In this way, he might be able to provide some good information for his medical team as well as himself.

As I read the suggestion of @bea1972, I realize that I also practice many of these eating habits, especially the small, frequent meals, yogurt, liquids and physical activity.

@kerryos, are some of these ideas helpful to you as you try to control your symptoms? You said that you haven't had any treatments yet. What type of treatments is your medical team looking at?

kerryos | @kerryos | Jan 2, 2023

Thank you for connecting.
At this stage concurrent chemo/radiation. More info today with surgical Consult. I am grateful for your suggestions & have started smaller more regular meals though need guidance. I am fighting dehydration & weight loss while trying to optimise my health in preparation for the assault that I know is coming. I started whey protein shakes for breakfast 3 weeks ago and believe these are the cause of excess wind that causes so much of my pain. My research found whey protein essential but need to find that balance. I have resisted pain relief so far, wanting to treat the cause not the symptom, buts it's wearing me down & I'm starting to snap at my family. Is this normal?