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Diagnose a week ago after being ill 18 or more years!!!!!


Txs for stories and all information provided, amazing and i hope you all feel better now or asap. If my english is poor at times the laughs are on me ;)

Im 45 years old live and born in Sockholm-Sweden and got my Crohn's diagnose 8 days ago!!!!!!!!

After being ill since 1998, i was an athlete, played soccer in swedish 2nd division as a semi-pro and i was on holiday in Greece -98 after two extremly stressful years and my body completely "died" from one day to the other. All my tears, saliva everything dissapeared emmiadetely, the mucuos went superdry from being a "drevler" it was like being an dry alien in your own body. It hit the neurosystem and autonome system with big problems, got major polyneuropathy, it also affected bladder, pooping ;), balance, vision, cognition, mild fever etc etc. Its so sick everything. Ive been on sickabsence the last 10 years and im on pension now and they havent found anything in tests until now. I believe i got Sjogrens syndrome then back in -98 but tests are negative for PSS although symptoms are for. We have rheuma in the family. But sweden is now a u-country regarding healthcare sorry to say. Thats why its free of charge i think ;). It could be Crohn's alone but ive never heard of Crohn's attacking the saliva glands? I get all strange stuff last was a lot of 1-2cm benign lipomas on cheast an ribcage and the radiologist confirmed that the saliva glands are under "attack". Anything you heard about? Neurolog problems and Polyneuropathy ive now read can occur with Crohn's!? This is the extreme short version of what ive been going through the last 18 years. But im a warrior as you and the rest of people posting here :).
I have a chef plus nutrition education ( but i am a stupid one ) lol, havent changed my diet earlier despate problems with food and the gut for more 18 years. Totally makes sense about the lectines. I have map tongue and lichen since a young boy and there we have the lectins, it all makes sense now. My tongue has been swollen/painful with a lot of foods all my life but no allergies confirmed not then nor now either, not gluten, diary, lactose nothing so i just thought everybody feels pain from food and get mouthpain, nesslerashes, stomachpain. But now i see that thats not the case at all ;).

So 5 years ago i got worse with low ferritin, tired, more stomachproblems , hungerproblems and then its for me easy to go with junkfood cause its the only thing that tastes. No weightloss. Nothing on coloscopy, they could see very slightly signs of inflammation then but they went on the patalogies findings wich were none at that time. Now though they could only see inflammation in transversum but the whole large colon was inflamed recording to patalogy findings.

The doctors are scary in my opinion, they wanted to put me on a medication regime rightaway after taking some tests necessary. First they said prednisol 7weeks and then Azatriopin treatment!? What do you or anybody else say about these medicins? And do they now something about my "mild" inflammation that theyre not telling!? When i asked about the diet they answeared -there are no science that the diet have anything to do with this!!!! I had a 9week flare starting 15weeks ago. Lost 6 kg's but that was for not eating. Now im 172cm, 80kg. Last week of the flare 6weeks ago i took out gluten totally and ate rice, chickenbreast, cod. With amazing results, polyneuropathy reduced with 50-70% , happy all the time, the brain whent from 60% to be a "supercomputer", better concentration, less impulsive, better sleep, a little more mucuos, clean nose/breathing etc etc feel like a different person and my CRP whent from 29 to 16 my ferritin from 8 to 11 in 4weeks without gluten. The flare whent away emmediately. days ago i went on further with taking away all diaryproducts except i made ghee, all lectinfood that affects me whent and all glutamat-msg food. Even more amazing results now! No way im going on those meds, maybe ill go for Asacol!? So now im doing my own protein soups and then i mix them in the blender and just eat the puresoup with white rice. Thats what you give the dog on diarrhea ;) boiled cod/chicken and rice plus some ricewater and it always workes on him and he eats a lot of crap outside. So it should matbe work for me aswell!? ;)

My last bowelpart , rectum has been "boiling/heating" as long as i can remember and now 8days in on my protein/veggie puresoup even 90% of that is gone. Whent to the gym today and legday on schedule and this is remarkable, a lot stronger today than my last legday 10 days ago and then i was on diary and whey-80 protein !!!??? I eat 500gr lean meat+ 5-700grams kind veggies at the time. I want to rub this "dietdoesntmattercrap" in the docs face, i asked him, if food could bring down my calciprotectin level under 50 would i need prednisol then? And he answears NO, so why shouldnt i try the food first. Hope it works, would be so nice. I had 2170 in calciprotektin 16v ago and feel 95% well now!!!!

Have a question about meds. Have anyone tried the mildest remission meds there is along with strict diet ? Azatriopin feels in some way "crazy" cause they also said that you have a "mild" inflammation maybe the problem is that the whole bowl is inflammed!? What do you think about this? And is that why they wanna go all-in emmediatelly? I read of an italian/american guy whos been in remission 8 years whitout meds also taking away lectins and food bad for him!? For me its more important living on kind meds or whitout meds if possible comparing having wheat, diary, sweets or icecream. But thats how i think, adding right now ;) lol!!!!! but i do my own chocolate on coconutoil, cacao and honey! Ghee, rice milk etc....

And one more question has anyone here experienced crohns attacking the saliva glands? Cause mine are deeply affected with very little mucuos everywhere!?

Would be very thankful for tips regarding medication and food.

Looking forward to some feedback on this.

Kind regards and the best to all /Tony
Welcome. I don't know about the saliva glands. It may or may not be an extra Intestinal Manifestation. I know I also have neuropathy. Prednisone is a medicine that gets tapered down. I have always had a puffy face and put on weight while on it. Everyone is different. I have been on azathioprine for years without much side effects. I personally would not try something that you have tried for your dog. I hope they can get you on something that will put in remission.
Hi, welcome to the forum. I had to smile at your "doggy diet" lol - this is a new way of dealing with Crohns! I understand what you mean though, soup and rice are a sensible way of eating (though I personally would need to be careful about the amount of fibre in my soup), it's not as if you're troughing Pedigree Chum and Bonios!

I am coping with my Crohns at the moment by means of fairly strict diet and mild medication (Asacol) and I'm getting by, not brilliant but coping. The consultant wanted me to go on biologics but I really haven't got the courage for that. I know that many people on this forum would advise you to take the most powerful treatment on offer, though, as it is possibly the best way to avoid complications and surgery in the future.
Txs to both and nice that you both are coping with your meds and how you feel at the moment :)

You got that right Lizzie im not eating dogfood ;) hahaha just the rice, chicken and veggiesoup. I have cut off gluten, diary and all "bad lectins" last 6-7weeks with amazing results on all of my symptoms so i will take the diet one step further.

I got the diagnose Crohn's last week but i dont trust the docs cause ive been ill for 18years, im certain its primary sjogrens syndrome and ofc you can get Crohn's from PSS but only 3 flares in 17years and nothing showing on two previous coloscopy tests. 8 years ago i got a flare that wouldnt go away so finnally i got asacol and it whent in remission emmediately after one week cure. The strange thing is that all flares have shown up after quiting smoking about 4-6 months and while taking adhd meds, now NO more meds at all just if i have to take them. And i have done "everything" wrong with my diet earlier plus a lot of casein rich protein drinks , 2-3 a day last two years plus those other meds that goes hard on your stomach. Can say that all of my adhd symptoms whent away aswell no on the diet whitout gluten, diary and lectins. Its sick everything , havent felt this good in 18 years !!!! For me nothing makes sense.

Talked to the doc today and they are ridicoulus , they wanted to give me prednisol+azatriopin cause in their notes it said that my one week asacol treatment 8years ago didnt work !? It was totally the opposite it worked perfect! But they saw nothing on either calciprotectin nor coloscopy 8 years ago!? OMG the swedish medical system is going like kursk :yfaint: . So i have a mild inflammation now and Asacol is now scheduled but i will take it out as soon its in remission and go all in with the diet. We'll see how it works out. Feel very good now without meds on the protein soup. Strong at the gym 4workouts a week and very good energy. A bit "hot" in the rectum part thats it!

We'll see how it goes ;) txs again and good luck to both of ya :)