Persisting abdominal pain, bloating, gas, clustering
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.