Seeking advice ... Crohn's treatment in Europe (UK/Germany/Spain)?

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ibdwa
New Member


Date Joined Jul 2016
Total Posts : 6
   Posted 4/3/2017 7:36 PM (GMT -6)   
Hello Forum members:

Having run the gamut of biologics from Humira to Remicade to Entyvio, and am now on Stelara since early December 2016. Response has been none/minimal, yet - but hoping it kicks in.

As all of you will understand, this condition is extremely disheartening/depressing .. and more so, when treatments do not deliver symptom relief. There are many times when I feel that this battle - since '93 - has taken a lot out of me, and whether I can soldier on.

At this point, I feel compelled to start exploring treatments in other countries that are more holistic in nature, incorporate other treatments that haven't been released in the US yet, and those with good success rate.

Please advise if you know of clinics, hospitals of this nature ... I will follow up.

My quality of life over the last 2-3 years has been very poor, everyday is a challenge. Immediate family (hubby and two teenagers 19 and 16) try their best, but everyone is impacted.

------
Female, 48 yrs
Dx in '93.
Re-sections in '93 and '07
Currently on Stelara

Post Edited (ibdwa) : 4/3/2017 10:45:02 PM (GMT-6)


eleanor_rigby
New Member


Date Joined Sep 2016
Total Posts : 12
   Posted 4/4/2017 3:24 AM (GMT -6)   
You could try LDN, Anti-MAP therapy, Mongerson, cannabis oil, stem cell transplant, clinical trials?

I am in the UK and certainly in our mainstream hospitals it is pharmaceuticals (from the bottom up) that are pushed, or your standard FODMAP diet.
There may be holistic clinics here but I would be surprised (assuming you are in the USA?) if you do not have the exact same where you are. I would be wary they are expensive and not necessarily appropriate for our specialist disease. I would bet you could find out a lot of information online.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9245
   Posted 4/4/2017 4:41 AM (GMT -6)   
The only thing I can think of that you might be able to get in Europe but not the US is something called Adacolumn apharesis. It's a method of filtering white blood cells. But it's expensive and I'm not sure how feasible it is - you don't want to travel for a treatment you can't even get.

Any of the other things though (low-dose LDN, anti-MAP therapy, medical marijuana, clinical trials) you could find a sympathetic GI in the US to prescribe. You may have to travel for that as well, but you could certainly find someone in the US who would work with you. Personally speaking, out of all the alternative treatments listed I think anti-MAP therapy has the most potential to genuinely make a difference. If you're interested, do a site search for MAP and Crohn's; try to find posts by a poster called irishgal as she has a lot of info on the subject.

Could you give us a bit more info on what your symptoms are? Medical marijuana could help with pain relief and appetite increase, for example. Imodium, opiates (careful of the addiction potential) or Questran can help with diarrhoea. Restrictive diets can reduce symptoms as well, although I'd be extremely wary of those if you are already underweight and undereating.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)
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