Staying in remission, alternative to western meds?

[Noah]

Hello all

I have had Crohn's since May this year, however the docs were unable to make a clear diagnosis from my biopsy results. The results did show some inflammation in the Terminal Ileum, some patchy erythema and the occasional ulcer in the descending Colon. I was kept in hospital no longer than 5 days and responded well to antibiotics and 7 weeks of a fresubin liquid diet. Blood results came back with 0 inflammation. I have never had a problem with my bowels, fever, nausea etc. Just occasional bloating and tenderness in the right side of my Colon.

I have been feeling good for months. I have transformed my diet. I would say I eat very healthy, no junk, no wheat or caffeine, and I have reduced dairy, sugar and alcohol intake. I take many supplements such as pro-biotics, fish oil and vitamin D.

My last bloods and stool test showed a slight elevation in inflammation, with my specialist suggesting that a flair in the coming months is likely. Funnily enough I have been experiencing tenderness in the right side of my Colon, no other symptoms. It comes and goes but doesn't stop me from doing anything.

My Doctors immediate reaction was that I need to start on Imuran (azathioprine)
Of course I have research a fair amount of the pros and cons of this drug.
I generally feel as though I'm in good health so it seems crazy to declare war with my body and start taking Imuran, a drug that could potentially cause me more problems.

Has anyone been in a similar situation? Have you found other ways to keep this disease at bay? I want to believe that living the right lifestyle can keep the Doctor away, bit I'm still in 2 minds...

 

[DJW]

Hi and welcome.

Its great to hear you've taken steps to control things. I believe in hitting this disease with everything (including meds) to keep it under control. I know from personal experience the damage under treatment can do.

Sending you my support.

 

[Noah]

Hi, thanks for your reply.

Have you been in drug-free remission?

N

 

[highlandsrock]

Hi Noah

I can understand why you would not want to start Azathioprine given how powerful it is and its many side effects, as your research will have shown you. I'm guessing your consultant is suggesting it as it is used for maintaining remission rather than steroids which are used to hit flare-ups.

I've had Crohn's a while now, mainly in the terminal ileum and on balance there have been many more good years than bad years. I have never followed a special diet but do take iron tablets and have 3 monthly B12 injections.

Have you discussed your concerns with your consultant yet? I work on the basis that they are the expert on the condition; you are the expert on your health - which includes lifestyle and choices. I find this arrangement works well.

BTW - are you treated by one of the London hospitals?

 

[Noah]

Hi

I do strongly believe my diet and life style changes have had a very positive effect on keeping my Crohn's manageable. I think that If I was to return to my old habits after reaching remission I would have been back in hospital quite some time ago. I do think that I have still only scratched the surface with changing my life style, theres still a long way to go. I also get quite stressed and suffer from anxiety, understanding how to deal with this is another big step.

I have an appointment this Thursday to discuss my next steps. Up until this point my docs have been more than happy to let me explore a dietary approach. I think I will write down my concerns and questions as I usually forget things in the moment.

Yes I'm being treated at the Royal London in Whitechapel by DR Langmead's team. They have been really good. I do find it slightly frustrating that I see different Doctors on each visit who all have their own opinions.

 

[highlandsrock]

For most of my Crohn's career outpatients appointments have usually been routine but over the last 4 years they've got rather intense. I wrote down some of the things I've learned that make appointments more productive. They are listed here - http://www.crohnoid.com/2013/05/managing-consultants-and-appointments.html. Let me know if you find them useful. I always insist on seeing the same doctor - item 3) Continuity

 

[DJW]

Hi, thanks for your reply.

Have you been in drug-free remission?

N

I had 20 great year of drug free living. I wasnt on any special diet or alternative medicine program. During that time I wanted to put as much distance between me and this disease as possible.

I also stayed away from doctors as much as possible (WOULD NOT RECOMMEND THAT). I had a couple clean scopes/biopsies etc in that time.

A couple years ago I had an obstruction and perforation. During surgery the surgeon found crohns again. It was silently causing damage. In retrospect I had been suffering from extra intestinal manifestations for almost a year.

So no meds is possible but crohns can cause serious damage without knowing it I rrecommend maintenance meds and regular check ups with the GI specialist. The risk of under treatment or nontreatment is not worth it.

 

[Noah]

They are listed here - http://www.crohnoid.com/2013/05/mana...ointments.html.

Thanks I will have a read through.

Thanks for sharing DJW.

 

[Noah]

@Highlandsrock, wow so organised thanks, was a very useful read

 

[syzygy]

I spent over a year after diagnosis basically doing things drug-free other than a time-limited course of budesonide. I focused mainly on stress-management with some diet and acupuncture thrown in. 1.5 years later a repeat MRI showed worsened inflammation and the possible beginnings of a fistula, so I finally agreed to start Remicade. The jury's out on how helpful that has been. I'm still trying to make other lifestyle changes, am consulting a holistic practice next week, and am considering a consult for medical marijuana, but am coming to the realization that drugs will probably need to be an important part of my ongoing management plan.