Old Crohnie newbie here

[Crohniehound]

Hi all, I was fifty earlier this year and have lived with Crohn's for approx 36 years, so consider myself something of a Crohn's veteran now. Until last year I thought I was doing okay on Azathioprine and a low dose of Pentasa, following my last surgery 11 years ago, which left me with only approx 1.1 metres of small bowel. Any occasional 'glitches', I would increase my Pentasa as I saw fit, but these were few and far between. I had my regular blood tests and B12 injections as ordered. Then last year my docs changed my medication to Methotrexate as they thought I'd been on the Azathioprine long enough, and it was adversely affecting my skin (increasing sensitivity to UV in sunlight causing severe keratosis). The changeover went without too many issues apart from one blood test which showed my liver function was a bit off the scale. This settled down gradually.

Last week I had the results of an MRI scan from 2 months ago, to see the current state of my insides on Methotrexate. This has unfortunately shown active Crohn's inflammation around the surgical anastomosis and a 5 cm concentric stricture. It's difficult to know how long it's been there. I hadn't really been aware of any new symptoms up to that point, though perhaps with hindsight there had been a bit more rumbling and gurgling going on after eating - which could be attributable to a stricture forming - but nothing major. My docs are now recommending changing my medication again to one of the biological therapies - just not sure which one yet.

So after a relatively long, mostly settled period it seems I'm about to embark on another unwelcome Crohn's journey. This time, however, with so little small bowel remaining, I feel it will probably be my last chance to maybe find an alternative means of treating my current symptoms and preventing the same thing from happening again. One of the things about being 'settled' on prescribed meds, is that it can lull us into a false sense of security. 'Normal life' takes over when we feel well, and I had become very complacent with my diet again - eating pretty much whatever I wanted without any apparent ill effects. Some things I had been made aware of over the last ten years or so, including more intolerance to cow's milk and fat in foods generally. I had changed to lactose free milk and then more recently to almond milk (unsweetened) as I actually prefer the taste.

I have just increased my Pentasa to 3 gms a day and am taking over-the-counter turmeric capsules twice daily, while waiting to hear what my docs' next move will be. However, I am particularly concerned about having a new found stricture, as these have always led to my needing surgery in the past (my last operation was my 6th for these and related fistulas). I really can't afford for this to get worse again, or to lose any more small bowel!

I have just been reading about some Crohn's sufferers relief from strictures in taking glutamine and colloidal silver, and I wondered if anyone here has any experience from taking either of these as supplements?

[willow24 Administrator]

hi, I think biologics are definately the next thing to try as all the other meds have been tried. Biologics are used when there is little or no response to the other meds, and they really are good. they are administered either by an infusion which you have every 8-12 weeks (just pop to hospital for half day) or injections which you can do at home (an IBD nurse will teach you how to use the injection pen)

I only have about 10cm affected small bowel, but whole of large bowel and rectum is affected. I take magnesium and zinc, more to combat muscle cramps, and Vit D as deficient.

I like you find fats are a major factor in my crohns, I did try dairy free for 6 months but it didnt make a difference for me.

Would you recommend tumeric capsules? Im always in 'grumbling' crohns phase when Im not having a flare

[Crohniehound in reply to willow24]

Turmeric is a staple ingredient of Eastern cuisine, long renowned for its health benefits, in particular for aiding digestion. Its the curcumin contained in turmeric which is a natural anti-inflammatory. I've only just started taking turmeric capsules (bought from H & B a while ago) on a regular basis (2 a day as stated on the packaging) so the jury's still out at the moment, however I'm already thinking of trying to take it as 'golden paste' instead. This can be made at home from pure turmeric powder, heated with water to form a paste, then an oil such as coconut oil, and freshly ground black pepper added. Once made and allowed to cool, it can be stored in the fridge for 2-3 weeks at a time. The pepper is apparently very important as it contains the acitve ingredient piperine which unlocks and maximises the anti-inflammatory properties of curcumin. Other spices such as cinnamon and ginger can be added, as the flavour is not to everyone's liking. It can also be made into a tea.

There is a very helpful 'Turmeric Users Group' which I've joined on Facebook facebook.com/groups/turmeri...

[willow24 Administrator in reply to Crohniehound]

Thanks, I always have powder in stock as I like to make curries so may have a go at making the paste

[Crohniehound in reply to willow24]

Meant to say, I've already made golden paste before, for our greyhound who went lame a few months back. It got him off painkillers and he actually seems to love the taste! It is especially effective in relieving inflammation of arthritis and joint problems, just not so good in his case now though, as he's actually undergoing laser and ultrasound treatment for a chronic iliopsoas muscle injury. This tiggers inflammation in the muscle in order for the healing process to begin, so further treatment with golden paste would be counter-productive for him until the laser therapy has stopped.

[willow24 Administrator in reply to Crohniehound]

Bless him, I hope he makes a good recovery x

[Angep in reply to willow24]

You need to add black pepper to the turmeric for it to be activated and absorb properly😁

[Hidden in reply to Angep]

Hi, only just discovered your discussion. I researched turmeric and curcumin online a few months ago. The info I found said you would need to take extraordinary amounts of turmeric for the curcumin to have an anti-inflammatory effect. Not sure how reliable the above is but I decided to take 'Curcumin 95 Bioperine' (black pepper extract) capsules daily. Not cheap but i guess following some dietary regime gives you back "some control" over the uncontrollable Crohn's.

I also use almond milk, milk-free margarine, lactose-free cheese, and

try and eat gluten-free as much as possible. Cutting down on sugar not going so well, especially not at Christmas