Seeking alternative CD treatments when nothing else has worked

My mother has had CD for nearly 30 years and nothing seems to be working. HER CD is so severe she is using the bathroom upwards of 30-40 times a day, has very bloody (sometimes only bloody) stool, has severe pains in her abdomen, and has found CD to be severely debilitating. There was one medicine which seemed to work (remicade), however she stopped treatment after stage 2 cancer started developing in her lungs. She was recently hospitalized for 5 days which only found her temporary relief. She finds that taking pain medication lessons the symptoms, however she can't spend the rest of her life in a fog of pain medication.

Could anyone recommend any alternative medications/surgeries that might have worked for them? My mother seems to be giving up on traditional medication as well as all GI doctors.

BTW, we live in Seattle Washington. I have seen other threads of doctor recommendations, but I am wondering if anyone has any suggestions for the west coast? However, at this point my mother would travel the world for some relief.

There is a section that deals with diet, nutrition and supplements. You might try it.

Low dose naltrexone, anti-MAP therapy, SSI, stem-cell transplant, entyvio, stelara, humira, colonostomy

I'm sorry your mother is suffering so. As Eleanor has pointed out, there are many more medicines and treatments out there to try. Do you know if she's tried any of these?

There's also the phase 3 clinical trial going on for Mongerson which looks very promising.

mzjenn84 said:

My mother has had CD for nearly 30 years and nothing seems to be working. HER CD is so severe she is using the bathroom upwards of 30-40 times a day, has very bloody (sometimes only bloody) stool, has severe pains in her abdomen, and has found CD to be severely debilitating. There was one medicine which seemed to work (remicade), however she stopped treatment after stage 2 cancer started developing in her lungs. She was recently hospitalized for 5 days which only found her temporary relief. She finds that taking pain medication lessons the symptoms, however she can't spend the rest of her life in a fog of pain medication.

Could anyone recommend any alternative medications/surgeries that might have worked for them? My mother seems to be giving up on traditional medication as well as all GI doctors.

BTW, we live in Seattle Washington. I have seen other threads of doctor recommendations, but I am wondering if anyone has any suggestions for the west coast? However, at this point my mother would travel the world for some relief.

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There's not a ton of "alternative" medications out there that have any efficacy for Crohn's. There are some that are "not approved" for Crohn's but have small amount of efficacy that can be used as a last resort.

One of the frustrating things about living with this disease is knowing that the list of treatments is short, and grows shorter as you age and individual medications are found to not be effective.

The real question is - what is the state of her cancer? That obviously complicates things as the best drugs (including Remicade) can't be taken while you have cancer.

Regarding doctors ... I'm originally from Seattle, and the best IBD clinic is at Virginia Mason in downtown Seattle.

Drs. Chiorean, Lord, and Boden *only* see patients with IBD and are on top of all the latest treatments. Lord (my doctor before I moved away) and Boden have active laboratory research programs and combine the theoretical knowledge with clinic treatement. I believe it is critical when you are having a really tough time with Crohn's to move your care from a general gastroenterologist who treats dozens of diseases and may only see a Crohn's patient once a week, to one who primarily treats Crohn's and has a specific interest in doing so.

If you're frustrated with the care she's getting, give them a call at (206) 223-2319. https://www.virginiamason.org/digestive