Global Treatments

[CrowKnee]

Can I try to establish a list of Global Treatments available for Colitis Crohn's? Past, present and future, please?

I ask because I can not believe how limited my medical options are in the UK. I am aware there are no cures therefore I question if we/they are looking in the right directions? I understand lifestyle, environment and diet are vital aspects of managing our disease. I also appreciate the concept of the holistic approach and have considered herbal supplements, but not having the guidance in these areas I'm am very cautious.

I am not oblivious to what my future may hold so I feel the need to find the correct treatment or make preparations to maintain the best quality of life possible and try to prevent further surgery as much as humanly possible :ybatty:

Thanks


:sign0085:

 

[24601]

Hi CrowKnee! Welcome to the forum!

Which treatments have you tried? Any particular treatments you are interested in? Whatever it is there's likely to be someone on the forum who has done it or has some info

I'm sure there will be lots of people who stop by to share their ideas!

 

[CrowKnee]

Hi and thanks

I was diagnosed with Colitis Crohn's in 2006. Initially I was prescribed Asacol, which didnt help, then I was on Azathioprine for 7 years and Humira briefly before some serious surgeries in 2013 & 2014. I have been med free since surgery but my recent blood works have showed signs of active Crohn's so I have been put on an 8 week reducing course of Prednisolone. I am booked for 2 endoscopies the end of the month.

So far I have been informed I face the same 3 stages of medications that failed previously. Stage 1: Prednisolone, Stage 2: Azathioprine & Stage 3: Remicade/Humira. I am aware there are other biologics due for release but considering these 3 stages failed to work for me previously and surgical intervention was vital, by crossing the surgical boundary I was made to believe that the reality of the situation is that surgery is my only future option.

Albert Einstein said “the definition of insanity is doing something over and over again and expecting a different result.” Considering I have managed my mental health well through all I have faced over the years I cant help but wonder what they expect from me!??

I am open to ALL suggestions

 

[Lady Organic]

I'd suggest trying Purinethol which is very similar to Azathiopurine. Purinethol works for me, but strangely not AZA. In the immuno-suppressant number 2 category there is also methotrexate by self-injections. Ive tryied methotrexate and failed, but you may be responsive?
methotrexate is widely available and has been used for long time in rheumatology and a bit in IBD.
In the UK, there is a GI dr named John Hunter who works a lot with Elemental liquid diet for crohns fallowed by his LOFFLEX diet, at Addenbrooks hospital If I remember correct. Ive posted several post on this subject in the forum, just make a quick search and you'll find plenty of info and even videos. Ive seen one member in the forum patient's of dr Hunter. you can check my signature and get info about IBD-AID diet which is another suggestion. wishing you well.

 

[24601]

So, yes, I understand that it seems that like you will be doing the same thing over again if you follow those same three med categories path but that isn't exactly true (as Lady Organic said you can respond to one med in a category and not another) - and more surgery definitely isn't the inevitable result. I do understand that what you have been led to believe is a very depressing scenario - I've been there!

Your conventional first line therapies to get you in remission are steroids BUT ALSO exclusive enteral nutrition (an elemental liquid diet is one type of enteral nutrition but any complete nutrition drink works just as well for most people - drinks like Ensure or Fortisip). With enteral nutrition you usually do a 6-8 weeks course of liquids only without normal food to get into remission - works for about 70-80% of people (as does pred) and in a similarly short timescale. If you didn't respond to pred you may to EEN. But even if you did respond to pred you may choose EEN for the lack of side effects and because it is better for achieving mucosal healing.

Maintenance meds are conventionally immunomodulators and biologics or a combination. And as Lady Organic said you might not do well on Aza but 6mp might work for you, or methotrexate which is not the same family - so good for people like me who don't tolerate any of that family of meds.

In the biologics you have infliximab and humira which are both anti-TNF alpha meds and some people will do better on one than the other - and some people won't respond to either (probably because excess production of TNF alpha isn't an issue for them) and then you may well do better on a biologic that works in a different way like Entyvio/vedolizumab which was made avalable for Crohn's in the UK in February.

You've also got dietary therapies as Lady Organic said. This can include staying on 50% EN for maintenance or doing repeated course of EEN, as well as IBD anti-inflammatory diets, which some have success with. You can also do these dietary therapies in combination with meds.

Then there are other options like anti-MAP antibiotic therapy - not as widely available but it is prescribed at the hospital I go to - Guy's and St Thomas'. And if your disease is really problematic then you could end up with the option of having a stem cell transplant like me.

What kind of Crohn's do you have? What were your surgeries for?

Do keep updating us!