Please help! Severe stomach pain when eating

[kblairj]

My husband was diagnosed with Stage IV colon cancer/peri Mets after an emergency resection in January. He started Xelox/Capox regimen 3 weeks ago and the first two weeks he tolerated it well but then developed severe abdominal pains when the first bite of any food hits his stomach (not nausea but then gets nauseated from the pain) His onc seems to think it is gastritis but he can barely eat, and had to get IV fluids. They started him on Olanzapine last night and also Prilosec earlier this week but nothing is helping. They paused the chemo for a week to help his stomach heal. Has anyone else experienced this? I can’t stand to see him in such pain and unable to eat. Thank you.

[beach sunrise]

Have they done any tests at all for the complaint? C-diff, H plori, or a scan to check for blockage of some kind? Any thought in reducing the OXA to see if that's the cause.
Just throwing these out there but I have not had that issue. Others will chime in with thoughts I'm sure.

[kblairj]

They have only done bloodwork, no new CT Scans since his last one was only 3.5 weeks ago. Don’t think it’s the Oxa since he has only had one infusion, also 3 weeks ago and this is a new development in the past 7 days that has gotten progressively worse. The Olanzapine they just prescribed caused him to sleep 16 hours today so that’s also a concern. Thanks for your reply. Just trying to navigate this as a newbie caregiver to this club.

[beach sunrise]

You have come to a great group of knowledgeable, sincere people here.
In the meantime search this site for info on your husbands case.

[kblairj]

Update: we ended up in the ER where he had a CT scan with contrast. This was one day AFTER we saw his oncologist who said it was simply gastritis. It was not. He has ileitis from the capecitabine. They paused his treatment for one week, have given him an anti-spasmodic,lomotil and a bland diet to see if we can get it under control. I’m a little bothered by the fact that this didn’t even cross his oncologist’s mind at all. I have also read that he may need a cortosteroid to help it heal. Playing it one day at a time but really hoping he can restart his chemo next week. I feel like I research and sm more knowledgeable than his doctors. Is this common?? Thanks for all the suggestions. Navigating this one day at a time.

[roadrunner]

I don’t know if I would say that it’s common “to be more knowledgeable” than the doctors—in fact, I think that’s rare or at least uncommon—but is it essential to be an informed, aggressive advocate? Absolutely, and Bravo! to you for doing so here.

In that regard, don’t hesitate to raise the corticosteroid (in a firm but respectful way). If such stuff continues (or has been a pattern), I’d consider a new oncologist (if possible). These folks are very busy, and my advice is always: (1) build relationships if possible, including through positive, personal interactions with receptive physicians and staff and (2) read, research, ask as much as you can bear and understand, then filter that down to essentials and communicate timely, firmly, and respectfully.

[Rock_Robster]

To be blunt, unless you’ve also done a 10+ year degree and residency plus specialisation training, it’s very unlikely you’re “more knowledgeable” than his doctors. Unfortunately it’s easy to fall victim to the Dunning-Kruger effect when it comes to medicine.

However, what you likely do have is a lot more time and resources available to track and investigate the minutiae and unique details of your husband’s case, including “mesearch” (ie secondary research tailored around one specific patient’s unique set of presentations and history), and to tap into a broad community of experienced patient advocates. His doctors in most systems simply have no time to do this, and are also usually bound by treatment protocols either of the hospital, the insurer, or the government (depending on the location).

This is a powerful combination however. Your oncologists‘ skills, training and access to resources - combined with your motivation, time, capacity and energy - if you can find a way to work collaboratively can be very powerful. Some doctors really enjoy working like this, others don’t - I’d suggest taking the time to find one of the former.

[kblairj]

Appreciate the replies and definitely did not mean to insinuate that I am more knowledgeable than the doctors because I am not---but ours don't seem to be truly listening to us in terms of symptoms, etc. In fact, when the severe stomach pains first began, it took me 4 days for ANYONE at the office to return my calls and they never even answered on the portal that they recommended we use. I ended up calling at night to their triage nurse who recommended going to the ER---where a week later my H got a CT scan that diagnosed the pain and severe diarrhea as ileitis. He's on the mend now, with the chemo paused a week, but he ended up losing a lot of weight he couldn't afford to lose in the time between me TRYING to get some help and actually figuring out what was going on--plus the pause in treatment. We do have a second opinion appt coming up Friday. I can't see us in a long-term relationship with his current oncologist as I don't feel comfortable around him already and it's impossible to get in touch with anyone in his office in a timely manner---is this the norm?

Thanks again.