Hello there

[mv93]

Hello everyone, I'm 26, from Croatia and I've been diagnosed with crohns about a year ago with first symptomes appearing a year before the diagnosis.

I guess my illness was induced by a huge amount of stress I was going through at the time and unhealthy lifesytle. I was smoking a lot, eating trash food, working a lot of night shifts and had very bad sleep for months.

It started out with often stools, 7-8 a day and cramps in my bovel, long story short after visiting a doctor for about 20 times, three ER visits and 15kg (33lb) lost I ended up with a body weight of 65kg (143lbs) on my 186cm height (6ft 1inch) and in generally a very bad state (constantly exhausted, slept 12hrs a day etc.).

Then one of the doctors decided to send my stool for calprotectin test and it showed 550, colonoscopy confirmed it was crohns im terminal ileum, luckily the illness is in small scale.

I was then given a therapy of steroids and azathioprine which caused pancreatitis and damn was that a painfull experience.
While I had pancreatitis all therapy was stopped and after leaving the hospital I had no symptoms of crohns.
Two months later I had another brief flare which another steroid therapy seems to have calmed down.

And now we're here, I am not receiving any therapy for about 2 months now, sometimes I feel light discomfort and slight pain im lower abdomen, but no other symptomes for now. But the problem is I don't know what I'm supposed to do next?
A lot of things have been left unexplained to me by my doctors, I hope to find some answers here.

Cheers!

 

[my little penguin]

The docs should give you a maintenance therapy
Methotrexate is left as well as biologics -remicade /humira
Crohns needs to be treated to allow the gut to heal
Good luck

 

[mv93]

The docs should give you a maintenance therapy
Methotrexate is left as well as biologics -remicade /humira
Crohns needs to be treated to allow the gut to heal
Good luck

I declined mtx therapy because I am planning to have children in near future and biologics kinda scare me because of the side effects.

Is it necessary to have some kind of an agressive therapy or my bovel can heal the natural way with diet change, stress avoidance and generally a healtiher life?

If I don't show any symptoms, is my bovel healing or is it still inflamed?

As I said, a lot of things are left unclear to me :/

 

[my little penguin]

The only way to know if your inflamed would be bloodwork ,fecal caloprotectin , imaging and scopes
Crohns isn’t caused by stress
Diet therapies have worked for a small amount
Een (exclusive enteral nutrition) formula only
No solid foods is used in kids
Crohns exclusive diet has had some success
You combine that with formula

Others still need meds
You can’t use steriods many times over
They have long term known effects
Adrenal insufficiency is one
Diabetes osteoporosis cataracts etc...
These do happen

Ds was dx at age 7
Started remicade by age 8
Is now almost 16 still in biologics ( Stelara plus mtx )
He also drinks 50% of his diet from formula (neocate jr) and takes prescription probiotics
So what works for one does not work for all

Formula only een has the most proven results but is hard long term

 

[my little penguin]

Here is the full article

Dietary Therapy With the Crohn’s Disease Exclusion Diet is a Successful Strategy for Induction of Remission in Children and Adults Failing Biological Therapy
AbstractBackground. Loss of response [LoR] to biologics in Crohn’s disease [CD] is a significant clinical problem. Dietary therapy as a treatment strategy in t

academic.oup.com


Here is the thread woth all the diet details when Ds was on it
New diet Ibd
http://www.researchgate.net/profile...'s_Disease/links/54b19a200cf28ebe92e18ee6.pdf Anyone hear about this diet yet?
crohnsforum.com


List of dos and donts

They are listed in the appendix
Allowed daily meals : foods may be grilled fried baked boiled or broiled
Unlimited chicken/fish
Fresh unprocessed beef steak ( lean meat such as sirloin ) once a week
White rice
Rice noodles
2 fresh potatoes peeled not frozen and not consumed at same meal
2 eggs
2 tomatoes
2 cucumbers peeled
1 carrot ( shavings )
Fresh spinach ( side portion)
1 apple ( peeled )
2 bananas
1 avacado
Few strawberries
Slice Melon
Allowed condiments for cooking
Olive oil
Canola oil
Salt pepper paprika cinnamon stick
Fresh herbs ( mint leaves oregano coriander Rosemary sage basil thyme)
Fresh onion or garlic or ginger
Fresh carrot shaving for salad rice or soup
True honey
Table sugar (2-3 teaspoons a day for cooking or tea)
Beverages -soda water , water herbal teas
One glass of freshly squeezed Orange juice daily ( not from cartons or bottles)


Not allowed
Dairy products of any kind margarine
Wheat breakfast cereal breads and baked goods of any kind yeast for baking
Gluten free products not listed above soya products potato or corn flour
Processed or smoked meats and fish (sausages luncheon meats salamis fish sticks)
Sauces salad dressing syrups or jams of any kind
Canned products or dried fruits
Packaged snacks (potato chips pretzels popcorn nuts etc)
All soft drinks fruit juices and sweetened beverages alcoholic beverages coffee
Candies chocolates cakes cookies and gum

 

[curlywurly]

Hi Mv93
I was diagnosed with Crohns six years ago like you I tried Azathioprine like you ended up in hospital with pancreatitis then I tried Methotrexate it effected my liver so stopped that.
I suffer more with constipation now so I try to eat food to keep me regular.
I don't take anything at the moment but I am going for a capsule Endoscopy at the end of July to look at my small bowel as I still have pain and bloating. it is different for everyone as we all get different symptoms unfortunately so it is hard to treat.
I hope you settle soon without the need for strong meds.

 

[C J]

Hello everyone, I'm 26, from Croatia and I've been diagnosed with crohns about a year ago with first symptomes appearing a year before the diagnosis.

I guess my illness was induced by a huge amount of stress I was going through at the time and unhealthy lifesytle. I was smoking a lot, eating trash food, working a lot of night shifts and had very bad sleep for months.

It started out with often stools, 7-8 a day and cramps in my bovel, long story short after visiting a doctor for about 20 times, three ER visits and 15kg (33lb) lost I ended up with a body weight of 65kg (143lbs) on my 186cm height (6ft 1inch) and in generally a very bad state (constantly exhausted, slept 12hrs a day etc.).

Then one of the doctors decided to send my stool for calprotectin test and it showed 550, colonoscopy confirmed it was crohns im terminal ileum, luckily the illness is in small scale.

I was then given a therapy of steroids and azathioprine which caused pancreatitis and damn was that a painfull experience.
While I had pancreatitis all therapy was stopped and after leaving the hospital I had no symptoms of crohns.
Two months later I had another brief flare which another steroid therapy seems to have calmed down.

And now we're here, I am not receiving any therapy for about 2 months now, sometimes I feel light discomfort and slight pain im lower abdomen, but no other symptomes for now. But the problem is I don't know what I'm supposed to do next?
A lot of things have been left unexplained to me by my doctors, I hope to find some answers here.

Cheers!

 

[C J]

If you have Crohns, it never leaves you and will only get worse if not treated.
I have had Crohns for 48 yrs now and they didnt have the medicines back there only Steriods to slow it down, but it never leaves you.
Sorry to say...................You need to be seen, treated by Gastro Dr specialist not a general DR that isnt specialized with Crohns, hope that is who you are seeing, if not find one for best treatment .
Yes, good diet does help you feel less sick, less problems, and stress makes gut hurt worse so what ever you can do to prevent or get away from stress will only help, but need medication for Crohns to control it , it goes in remission but always returns.
C J and good luck, sorry to hear anyone new getting this Crohns, its a life time of dealing with, trying to live with but can feel ok, can do most all you did before inbetween flare ups but they do clear up also, so I do what I can to not let it win or stop me from doing what I w ant or my normal, and takes courage not to give in, it will win so that isnt an option, diet, take meds Gastro Dr gives up and some work more then others, some trial and error to find best for your body.
Good luck,

 

[Honey]

Hi C.J. I have experienced problems too with treatment, Pancreatitis etc. and in hospital with lung infection because of being on Remicade infusions. I was worried too about what next, but have been monitored frequently : Calprotectin tests and scans. It has settled enough for me to be on a mild med, Pentasa, to ease the symptoms. I recently have been advised to increase my daily meds. I am doing fine. So make sure you keep in touch with your Gastroenterologist to discuss how you feel and any meds needed to keep down the inflammation.
Crohns as others have said, is not caused by food. However, you will learn what foods aggravate your condition and what to avoid. For me, that is creamy , rich sauces. I hope you keep well. Best wishes.☺

 

[C J]

Hello again and I started out 48 yrs ago with all day Diarrea 30 X all day, but my normal before was constipation, so, really concerned.
I also chubby bad diet and started out at weight 150 and end of that year with everything going thru me, weighed 125 aden size 7 shoe fell off me, even shoes foot changed size................Long s tory short, 48 yrs ago no good meds they have now to slow the disease down so 20 yrs of Steriods, in and out of hospital and Diarrea meds all I was given, they were leaving what Crohns did and was and I back then used as guinne pig and they learned along with me. I learned diet, healthy, no roughage as hard to digest with Crohns and sick and so much more, took 2 yrs to learn, find out what I cant eat, complete change. As years went on, I now am skinny 110, and 115 and medium bone not made to weigh so little.
Got good at foods which are water soluable easy to digest and what isnt, and had to change, that helped everything by 50% as junk eater also all my life, I have had 4 resections, they removed intestines as no good meds so many years ago but they know now, and good meds and I will say, to bad so many intestines taken from me as leave other problems along with the Crohns but learned to get by ok, worked full time in sales office and bathroom right close by, so in and out inbetween sales phone calls but did it for 25 yrs with Crohns and Diarrea full time, my normal, and 25 yrs worked there with all my first 20 sicker, in and out of hospital but now past 20 yrs good medicine, learned how to feel better, what easy digestion helped and do 2 X better and seem normal if y ou didnt know me and nothing like my first 15 yrs so sick and in and out of Hospital, so pays to see nurtrtionist, and learn about easy digestion foods, felt 50% better lil less Diarrea altho always there for my normal but 15 or 20 X a day now instead of no control and 30 X and not losing weight now, pretty much my normal 125 from Crohns but use to be 150 and junk food and sicker so for me it did make a difference by 1/2 adn less sick learnign better diet, I did smoke back at first and they said would make symptoms worse, so i did quit, didnt feel better but trusted smoking with Crohns will make me worse, didnt want that so I quit for health.
Crohns now a days with good meds that slow Crohns down and never losing any body parts should be less sick, less surgeries, and feel not near as sick, but it still happens with Crohns, but need to see a Gastro DR not general if your not as they specialize in Auto Immune disease not curable but good habits and learn about Low Fat Diet no grease, no dairy you can feel new normal, differnt with changes but can feel decent and less sick and other to continue living ??
Good luck and lots of learning, changes, no fun but to not feel good isnt fun either, so I made the changes and feel 50% less sick and worked adn got thru the worse first part until good medicine that helped and other changes if you didnt know me you would never know I had anything wrong, active in big yard clean up, flower and vegetable gardens and pretty active, just have to be close to a toilet with 1/4 small intestines left, and most new Crohns diagnose, dont need removal of any parts, medicine better now I just got it way to early age 20 I am not age 67 so have learned lots just trial and error over the years but there is hope and few healthy changes and avoid what you know doesnt agree wth you, and you can live semi life and be active? Lots of learning what works but if y ou want to feel good, you will learn with time and it will help.
Ask me anything, not expert adn we all are lil different but willing to help or answer questions to help you do and feel better just own experience.
Diet for me was 50% of my problems and worth less sick and problems eating wrong foods Crohns doesnt agree with.
Ask Dr to see nutritionist, I have seen one 4 Times over the 48 yrs and each time, felt better giving up a high fat food I didnt know what was high fat, hard to digest and lots of other high fat, hates my systems maybe not yours different for each of us but over all high fat, greasy, soluable foods hard to digest, no sausage, salami no fast food full of fillers, no dairy first things taken away from me, hard to digest, lots of internet to ask low fat food list and foods for Crohns list and one by one learned better choices, it helps less problems to know and follow.
Good luck and I can say all I have been thru, I feel better most days then sick or problem days over all so hang in there, try and as time goes by I feel you can work it out to be your best, always some problems but for me more good feel good, active busy days with all my issues then bad ones so appreciate I have gotten to that I do ok most days with all going on with my body.
C J