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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.
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Is your abdominal pain worse when/after eating?
Did your Gastroenterologist check for EPI Issues? That exocrine pancreatic issues, where your pancreas isn’t t producing enough enzymes to allow you to digest food properly? Also have him/her check for celiac disease, etc. It could also be Crohns or colitis. Find a good doctor who will discuss these things with you(a good gastro is hard to find). Sending you positive vibrations, stay well and be positive, you will kick this!
I hope you have seen a gastroenterologist. Some suggestions: get tested for exocrine pancreatic insufficiency which requires a fecal elastase test on stool. You have many symptoms of that and it’s treatable. The Reglan would help the gastroparesis. The spleen enlargement may be causing the left sided pain. You should be evaluated by a hematologist and have blood tests related to possible anemia, related to the spleen and fatigue. It’s possible to have ulcer symptoms without an actual ulcer showing up which would respond to over the counter omeprazole and famotidine (pepcid). You should NOT feel like this at your age. Bottom line is you need a gastroenterologist and hematologist doing specific tests related to malabsorption and the other GI issues and specific blood tests for the cause of spleen enlargement. I wish you well and hope you get answers soon.
A few other thoughts- EPI and gastroparesis are associated with diabetes so be sure to get a HbA1c blood test just to rule that out. EPI causes you not to digest fats because of lipase enzyme deficiency. With your gallbladder issues and possibly EPI it would be helpful to be on a low fat diet until this is figured out. Your PCP could order the stool elastase test (fecal elastase -1) if GI appointment is far out.
Hi, I know your comment is from December 2022, but I just came upon it. I never had cancer but suffered the same symptoms as your husband since I was a young girl. I ended finally being referred to a Gastroenterologist who specializes in Gastroparesis. He had a test performed on me called a Gastro Emptying Test. The test took a couple hours and was performed at the hospital. I've since had the test performed twice now. Both times it shows food and liquids I eat move through my gastro tract and into my stomach much slower than a normal person. Hence the cause of the severe pain, gas, bloating, and not going to the bathroom for days. Then once I go to the bathroom it's a lot and I'm so sick the entire day. I get extremely sick before the release, during, and then it takes a while to recover. Since learning I have gastroparesis, I was put on a low fiber red low fat diet. You also have to eat several small meals a day to prevent the back up. I also take Magnesium Oxide daily. My doctor told me it's like milk of magnesia. Even with following this diet I still have issues, that's how bad it is. However, I'm in a much better position than I was previously. I hope this helps your husband if he hasn't found a solution already.