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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thank you!!! I appreciate your response. I’ve wondered why I hadn’t been recommended digestive enzymes by any doctor so I will look into these definitely. Thanks 🙂
no not yet, I am currently waiting to hear from doctor to have scheduled as he wants to take a closer look at the small bit of wall thickening in my proximal jejunum
Of all the testing you’ve done, take a SIBO breath test - it’s a kit your doctor or an ND can send you: you own it over 3 hrs & send back where lab tests for levels of methane. If present, very likely you have SIBO. If you do, very specific FODMap diet may be important. There are some natural supplements that work for some to kill bacteria. For some a dual does of select antibiotics may work. I only heard & got on board with this from an ND. Most western docs (w WG gastro specialists) are very ill or non-informed
about SIBO. It’s a huge issue with gastro conditions, both creating & worsening whatever you’ve got. SIBO can reduce stomach motility & cause horrific gas.
I purchased a yogurt machine. Dr Davis has a recipe that heals or helps with gut issues. I’m doing right now but just started on it. Check it out😊
I just want to reiterate how important it will be to investigate the SIBO probability. AND teaming up with a good nutritionist (be it out-of-pocket) or through your medical insurance provider. For instance, since I'm on a study program called Thaenabiotics (located in Portland, OR), my nutritionist had some strong suggestions about the KIND of probiotics I took (& excluding anything with "pre-biotics", as so many products have now), to ensure that there wasn't a particular bacteria in the pro-biotic that actually "fed" the bad SIBO I was trying to get rid of. She also recommended a particular brand of bitters prior to eating. I'm NOT saying that all this has absolutely helped me, but different treatments have various different rates of success from person to person. Because when it comes to gastro issues, checking in with ALL types of naturopathic (ND), western/gastro MDs, holistic, meditative, functional, acupuncture, homeopathic, etc., specialists - much less just reading thru these Mayo Clinic blogs - tells you that gastro dysfunction arises from a host of various conditions & issues & can also be (possibly) resolved with a similar BROAD approach to checking in with various providers to see if what they have to offer might make some difference in your inevitably very unique case. Good luck everyone.
thank you so so much, I am really appreciative of your response. I can definitely see this being SIBO related as I’ve heard it being a possibility before as well. I will be sure to look into it further. thank you again! 🙂
So sorry you are going through this at your age. That is a lot. Hang in there!
@jimmoran87 from the tone of your inquiries I’m guessing you’ve had a pretty free wheeling diet as a young man in his 20’s as I did when I was that age and I’m now 71. I didn’t know or consider what I put down my pie hole because life was good. I’m guessing a lot of what is going on is diet related and as your tests indicated your gut biome was not too healthy. A nutritionist and or a more holistic diet may be your future, which isn’t a bad thing. I hope your gut settles down.
One thing I didn't hear is whether you have considered whether you have IBS or if you have tried a low FODMAP diet or some other type of restricted diet. I too have a gurgling gut if I eat wrong or even too much. I cannot eat any raw produce and my gut only works by eating very carefully -- 15 things.
Besides the above, I take IBGuard before every main meal. It calms the gut muscles and works better for me than enteric-coated peppermint oil capsules.
The other other thing I can suggest is getting an introductory appointment with Dr. Margaret Gennaro, MD, located in Fairfax, VA. She has helped me with my gut when no one else could and does phone appointments. She has a website.
Hello jimmoran87,
When I read your post I got the chills! I have so much empathy for you, I’ve been dealing with the same mysterious GI symptoms for 2 years as well. Also suffer with anxiety and depression PTSD but this is different. Extreme fatigue even though I’m 38. Same church, different pew if you will-50% blockage in sigmoid colon due to severe endometriosis punching through but Covid in 2021 screwed me up royally. (Did you have covid or another viral infection by any chance?) Showed up on first of two upper/lower endoscopies. Since you’ve had both of those procedures thank god you didn’t have a blockage! My main point being I understand the pain under your left ribcage, that’s what I’ve been experiencing every day for 2 years as well, even after my bowel resection. Like a melon being squeezed under there! Severe severe pain due to gas buildup-splenic flexure sits right under the stomach and pushes against my colon- gas x phazyme nothing touches it..The vomiting, nausea, food sitting in my stomach for HOURS unable to eat without pain, to the point I’ve been afraid to eat. Tried low fodmap (IBguard helps...) but after bowel surgery, 7 CT scans GI emptying scan ultrasounds etc. and everything under the sun the one thing my incompetent GI dr. didn’t check was for low stomach acid! I’ve had the same particles of undigested food in my stool as you describe -its been so infuriating not getting answers. My chiropractor recommended I take this supplement from Standard Process called Zypan, and omg, it has changed my life! I’ve taken digestive enzymes for years (and still do) but this is the game changer. There are other brands, combos you can take but honestly, I trust my chiro (and standard process) better than ANY M.D. I can burp now when eating, instead of feeling the pain radiating across my left shoulder and down descending colon as you describe, and nerve pain to boot. Low stomach acid presents in the same way as too much stomach acid-bingo. Since my surgery and many hours of researching, due diligence, and clues from this wonderful mayo clinic forum and taking HCI supplement, no more unbearable pain and pressure. I sure hope this can help you as much as it has helped me. If you can have someone do it to you, acupressure points on your feet have greatly helped me as well, albeit a temporary day to day can't-take-this solution till i started my new regimen. I’ve also started taking activated charcoal pills 2x/week to help clear out the painful gas and it works! Hope this helps..hate to see someone suffering like I’ve been…esp on top of mental health stuff i get it.. def adds to exhaustion when your gut is having to work soo hard...uploaded the info I was given from standard process hope you can see it...best of luck and healing to you brother 🙂