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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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Being a Retired Paramedic and an EXTREMELY Type A, OCD. person I have a notebook at me side 24/7. If I'm in traffic I think of a question I can scribble it down while waiting at a light. If I awaken in the middle of the night or can not sleep due to the pain which seems to be 90% of my nights I will write down notes.
Always try to go into my appointments with a Focused 3 ( THREE)
Bullet points that I am determined to receive answers about. Along with 2 other backup just incase you have the opportunity.
You might ask your Dr if he minds if you take a small pocket voice recorder that will help you remember your conversation with him. Often they speak so fast and in medical terms which unless your a professional you will not understand.
Now this is my personal experience. Is I have Specialist who are NOT within the same network. ie. Their Dr.s notes etc do not cross share. So to keep everyone updated. At the end of each visit they pring an "AFTER VISIT SUMMARY " I take mine punch 3 holes into it and place it into a binder which I have them arranged based upon Provider. Primary care, Neurologist, Urologist, Cardiologist, Oncologist, Current Med List. Updated after each visit if there are dose adjustments, or Lab results which are released. Yes perhaps I'm " OLD SCHOOL " I prefer a hard paper copy documents whi can place notes on. Vs scanned electronics which may or may not preform when most needed in a timely manner.
Just a few tricks from someone who's been fighting this since 1996!
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4 ReactionsHello @mardee313 @kerryos and others in this discussion group. I have heard of a product called, Enterade, which is supposed to be quite helpful in dealing with dehydration. I heard about this product in an in-person NETs support group. While I've never tried it myself it was highly recommended from someone who was dealing with the symptoms of carcinoid syndrome and the diarrhea and dehydration problems. Here is a link to product information, https://enterade.com/?gclid=EAIaIQobChMIosmPicWw_AIViLLICh2OfQoiEAAYASAAEgJw9PD_BwE.
I'm under the impression that this can only be purchased online.
Will you post again and let me know how you are doing with the problem of dehydration?
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2 ReactionsThank you, I have bought a journal today to monitor diet, symptoms , appointments & questions, weight etc, so it hopefully will make more sense & I can adjust diet etc. What a journey.....
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2 ReactionsThese are all great tips. We took created a binder for my husband with color coded index tabs. Then I highlighted the most important points from each summary. After my husband's multiple surgeries, I also contacted the hospital where they were performed and requested a copy of all of the medical records. It took very long to go through, but we felt better knowing we had all of the information.
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1 ReactionWow- this product looks interesting. My husband no longer daily struggles with dehydration and nausea after his ileostomy was reversed and thereby eliminating his high output problem. However, I have a few friends who struggle with IBS. I will share this with them. Thanks for telling us about this product.
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1 ReactionCircling back to this group because a relative's coworker told them they too after rectal cancer surgery had similar symptoms as my husband. When they moved, a new GI recommended increasing her metamucil intake to 2 Tablespoons 1 time a day with 8 oz water. My husband's surgeon recommended he take 1 tsp 1 time a day right after surgery. He hasn't changed or many any recommendations for my husband. It seems like his surgeon isn't super concerned about his ongoing painful bouts of GI issues. Has anyone else had a dr give them a similar suggestion or tried more metamucil to ease their symptoms? My husband is trying to get an appt with a particular GI specialist in our area, but the dr didn't have a single new patient appointment opening through september 2024 when I called last April. We are on the cancellation list, but 4 months later haven't heard anything. Trying to find him some relief in the meantime until he can get an appointment with a GI. Any thoughts/suggestions are appreciated!
I don’t think there is any harm in trying the suggestion from the friend.
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1 ReactionHi, 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.