Surprise!! You've got Crohn's disease

[Freddie]

Hi, I am a medical specialist ( not a GI) in my early 50s who underwent a screening colonoscopy and had the surprise diagnosis of extensive established Crohn's disease of the colon from right ascending colon through to left descending colon. In retrospect I have probably had mild IBS most of my life, but have eaten a low GI diet for the last 10 years with rare intermittent symptoms. I had just returned from a 2month sabbatical to Europe where I had eaten a lot of starchy food, a lot of artificially sweetened food, occasional D and abdo pain specifically food related but resolved within a day but came home feeling really fatigued.

So the 2 weeks after my scope whilst I waited for biopsy results, blood, faecal and MRI tests I devoted to updating my knowledge on Crohn's disease (it is a long time since medical school) The only person I knew with Crohn's had recently died of cancer and the only other people with Crohn's I met were those in hospital and really sick.

Why me? It is the question everyone asks. Possible triggers, I had an appendicectomy in my 40s, recently under a lot of stress, I had been taking a lot of NSAIDs, eating a lot of artificial sweeteners and changed my diet, to a high carb/ starchy diet for a short period.

So my plan
1. Fix my microbiome in my gut (SCD, pre and probiotics)
2. Take a whole lot of supplements that have some benefit for either gut health or are natural anti inflammatories.
3. Monitor my gut inflammation with monthly calprotectin levels as obviously my symptoms do not reflect level of IBD.
4. Eventually will need to treat whatever the infective trigger was, will await results on SSI trial in Canada and MAP vaccine in UK.

My GI is indulging my holistic approach with a review in 3 months and ? Start medications then. I am hoping my calprotectin will be under 50 by then ( I may be in denial) and thus make immunosuppressants unnecessary.

As you can see I am a control freak, I need a plan.
Sorry for the essay.
I have found this forum very interesting and useful, but it saddens me to read so many accounts of unsympathetic and rigid medical practitioners out there who are skeptical of the role of adjuvant therapy and diet in disease process. Mind you some of my medical friends think I have gone whacko with my approach.

Thanks

 

[Stephen]

Hit up the helminthic therapy groups on Yahoo! and Facebook. Some crazy good successes with these therapies. Notably, recent clinical trials have been a flop for use of pig helminths on humans, but I can testify to the effectiveness of human worms. Since you're in Australia, government regulation isn't going to get in your way.

Glad you plan to take this on holistically. Better to leave the drugs as a nuclear option if needed. I tried to treat with diet and probiotics and bacteriotherapy for my microbiome for two years and it worked to some degree, but too stressful. Wish I had done worms first. They help all of those healing protocols work way better. Now 95% symptom free!

 

[D Bergy]

Sorry you have the bad luck to have Crohns.

Don't worry whether your treatment seems whacko to others. It will either work or it won't.

I have been on three crohns medications that did not work for me. They were socially acceptable, but not effective in my case.

We are all different. The solution is going to vary also with the individual. The positive thing is you have a plan and you will see if it works or not over time. Have a plan B in case it doesnt work. I am on plan D and so far so good.

Nice to see you are taking the bull by the horns.

Good luck.

Dan

 

[Freddie]

Thanks for that information I will keep an eye out for their study results.

 

[Freddie]

Thanks D Bergy, and yes I have a few fallback plans in formulation.

 

[Catherine]

We are also in Melbourne. I am the mother of a 19 years who has for the most part
Asymptomic Crohn's.

She is currently flaring without symptoms, her faecal calprotectin has increased, her blood count is heading in the wrong direction.

As faecal calprotectin is currently not covered Medicare we use Dorevitch as they are cheaper.

Wishing your all the best.

 

[dave13]

Welcome

Sorry to hear about the diagnosis.I was also diagnosed as an adult,at age 50.Have you checked out the diagnosed at 50 and over support group? http://www.crohnsforum.com/showthread.php?t=60132

I'm glad you are keeping your GI in the loop about your approach.Honest communication between patient/doctor is very important,in my opinion.

I follow the SCD and feel I benefit.I also add fermented foods to my diet.Many of us use diet as a tool to fight this disease. http://www.crohnsforum.com/showthread.php?t=48313 I am also astounded at the opinion by many(not all) doctors that diet does not matter.You will find that to be a topic where there is a lot of passion surrounding it.

Let us know how it goes these three months that lead up to your next appointment.It's true,we are all different and what works for one crohnie may not work for another.The thing is,we don't know what works for us until we try it ourselves. Good luck!

 

[my little penguin]

Also keep in mind fecal cal takes months to decrease from a flare .
True flare your numbers are in the 1000's. Which lowers to the hundreds within 3-6 months .
One proven "natural" way is EEN .
Basically has similar efficacy to pred but none of the side effects.
EEN is no food formula only for 6-8 weeks.
It is used a lot for kids as a first line.
Unfortunately -it stops working once more than 10-20% of your food is added back in .

If you can find a non med treatment (rare but..) that is great .

Here are a lot of research papers on various treatments /diet etc...(mostly for kids ) but still applies .

Better to be armed with info Incase you have to make a decision.

http://www.crohnsforum.com/showthread.php?t=43002


If after three months the need for meds is there make sure the induction med ( EEN or pred) is started at the same time as the maintence med since most immunosuppressants take 3-6 months to become effective.

Aslo as an adult you may want to look at LDN .
Some have success with that .
Good luck

 

[Nancye50]

Sorry for the sudden diagnosis, Freddie. I was kind of the same but am 39.
My thoughts: stress and NSAIDs are you're two most likely triggers. Artificial sweeteners aren't awesome but I tolerate a diet coke daily just fine now that things have settled down

Careful with the pre-pro-biotics. We don't know which bugs attack which. It's easy to further wreck your gut with flooding it with tons of the wrong ones.

Also, careful with the supplements. Educate yourself on the hidden ingredients (nightshades, etc) and know which ones can cause unexpected triggers and/or other problems...which lead to stress & continue the cycle.

 

[Justanothercp]

I'm interested in starting pre/probiotics. Any suggestion on a good brand?

 

[Freddie]

I live in Austrlalia so the commercial brands would be different.
For probiotics I make SCD yoghurt which I strain to make Greek style yoghurt.
I also eat fermented vegetables which I buy from my local organic store which has a great range.
For prebiotics I am only eating a few types as I am eating only SCD foods at present, so asparagus, onion and banana are about all. I am hoping that eventually I can go back to eating raw oats with my yoghurt which before Crohn's was my favourite breakfast.
Hope that is helpful

 

[rollinstone]

Hi Freddie, Queenslander here, sorry to hear you had to join the club but you sound like you've got a good head on you and will get to the bottom of it. I also believe crohns is of an infective nature, and am closey following the progress of the SSI, with any luck we may be having a trial held here in Australia, I've actually talked to prof Hal Gunn (the big guy running the show) about it, Professor Borody at the CDD in Sydney would likely be doing it. Speaking of which, he treats his crohns patients under the premise that CD is infact an infection, with the majority of them being prescribed anti-map therapy which is a combination of antibiotics that target mycobacterium (MAP), you should look into it if you haven't already, I think you'd find it fascinating. Anyway all the best, you've joined a great forum with many helpful caring people.

 

[Pilgrim]

Hi Freddie. I really am sorry to hear about your diagnosis, but on a forum it is good to have take charge guys around. With that in mind, would you consider posting your fecal cal results as well as your dietary changes and any other lab results which are "off"? Even though treatment seems to be somewhat individual it is really helpful to hear in detail what works for some people.

We tried SCD with our daughter (between med treatments), and it wasn't working for us, but it works for many people. I still make the yogurt (we all eat it) and cream cheese from the yogurt. We also make kefir. I hope to get to the point where we can move away from the biologics one day and keep control with diet.

Anyway, if you could make the time for it, please do keep us posted.

 

[Freddie]

Hi Pilgrim, sure here is my current diet.
I am following SCD ( I started with 3days of the intro diet), now my typical breakfast is cold pressed carrot, apple, ginger and pomgranite juice ( half strength diluted with water), mixed berries, nuts and SCD yoghurt with a teaspoon of honey. Morning tea I have a smoothie with a banana, almond milk, ice and a spoonful of yoghurt ( I make at breakfast time and take in a thermos to work) and a slice of SCD banana bread. I make banana bread, and some SCD cookies every couple of weeks and slice and freeze them so I can just take something for snacks at work. Lunch is usually dinner leftovers. Dinner is fish, meat or something vegetarian like a vegie bake. I eat a lot of avocados, tomatoes, salad greens and fermented vegetables, they all seem to agree with me. My mainstay other foods include cooked zucchini, eggplant, tomatoes, mushrooms, carrots, eggs and cheese. Plenty of SCD legal foods I have tried but don't agree with me. Drinks are tea (black green and peppermint) and water.
Supplements Calcium, zinc, magnesium, selenium, folate, Vit BGroup, Vit D, Vit A, Vit B12, fishoil. On a short course of high dose garlic, boswelia and tumeric.

Initial Lab results faecal calprotectin 800, P-ANCA positive, low serum globulin all other labs normal incl CRP and ESR.

I hope that is helpful. SCD has been my starting point but it seems that everyone is very individual as to what specifically agrees food wise.
The rest of my family may snack on non SCD food but as I cook most of the meals and work fulltime plus take hospital call they all have to eat for dinner what I cook for me - so no bread, pasta, rice, other grains, potatoes, sugar.
No complaints so far!
Best wishes

 

[Pilgrim]

Thank you for the specifics!

Please keep us posted as you make changes if possible.

 

[Freddie]

Hi Rolling stone, thanks for your post. I have had a look at SSi and Prof Borody's research from Sydney.
It seems to me that you need a genetic disposition and then some environmental factors which may include altered gut microbiome and an infective trigger. Whether the infective trigger plays an ongoing part in the inflammatory process is controversial as you know. Whilst diet ( and FMT) addresses the gut microbiome, the underlying immune response +/- infection need consideration also.
SSI looks promising also LDN, triple anti MAP therapy is long term and not without side effects, the MAP vaccine may be the way to go if it ever gets off the ground.
Keep me posted if SSI comes our way.
Cheers