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Crohn's Disease Forum » Treatment » Seeking alternative CD treatments when nothing else has worked


07-06-2016, 11:50 AM   #1
mzjenn84
 
Join Date: Jul 2016
Location: kent, Washington
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.
07-06-2016, 12:26 PM   #2
ronroush7
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There is a section that deals with diet, nutrition and supplements. You might try it.
07-06-2016, 12:45 PM   #3
eleanor_rigby
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Low dose naltrexone, anti-MAP therapy, SSI, stem-cell transplant, entyvio, stelara, humira, colonostomy
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2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
07-07-2016, 08:12 AM   #4
hcrum87hc
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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?
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Blessed is he who trusts in the Lord, whose confidence is in Him. Jeremiah 17:7.

Officially diagnosed with Crohn's Disease in June, 2014 2 weeks before 27th birthday after ER visit due to partial blockage (stricture).

Current Meds:
Humira-40 mg every other week
Imuran-150 mg/day

Surgeries: Ileocecectomy 7/13/16 removed 60cm of small intestines.

Status: All inflamed and strictured intestines removed. All remaining intestines are currently healthy.
07-07-2016, 09:44 AM   #5
eleanor_rigby
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There's also the phase 3 clinical trial going on for Mongerson which looks very promising.
07-07-2016, 11:49 AM   #6
northwesterner
 
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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'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
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