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Diagnosed over 2 years ago, still feel lost.

I suppose I'll start my story with a bit with a precursor to my life prior to my relationship with crohn's.

From about the age of 16, I had drank heavily and regularly, smoked until I was 20 and picked it back up from the age of 22 through my 25th year, and ate almost anything I could get my hands on healthy or not. By the time I was 25, I was unhappy with my life and self-conscious about not being as fit as I wanted to be. I had decided about 4 months prior to my system experiencing symptoms to become a health nut. I began to lift weights regularly, jogged at least 3-4 times a week, and began to adhere to a healthy diet.

Then the symptoms began to emerge...

Because of my change in lifestyle, I didn't take much consideration in my weight loss and increase in bowel movements. I thought it was one part stress from my personal life (I was taking my last year of courses at a local university and going through a breakup with a former girlfriend at the time) and the other the change in my lifestyle that my body was reacting to.

I was in denial that anything serious was wrong with me. I tried alternative and homeopathic diets after getting advice from a family member that I probably had a bacterial imbalance.

I stuck to a yeast-free diet for months with limited results. I still was losing weight, my energy levels decreased, and I gave up with my exercise routine as it was only agitating my symptoms. Eventually, I as too scared to go to a doctor, I was afraid I was dying of cancer or some other terminal illness.

Eventually, I gave in to my family and friends pleas to get examined. At that time I had lost almost 80 pounds and was a shadow of myself. My Colonoscopy and Endoscopy confirmed my diagnosis, Crohn's which was present from my colon to my stomach.

I began a regimen of treatment, Omeprazole, Azathioprene, and Asacol. This appeared to help my symptoms. I gained weight, and regained some normalcy. Four months later, my health dipped again and I developed a perirectal fistula.

I spent five days in the hospital due to the infection that caused it. I was then placed on Humira. Since then, I have lived with a fistula, which has either branched off or formed two other perirectal fistula sites. I haven't ever fully recovered to a level of normalcy in my health. My health has improved and declined to varying degrees.

I recently started seeing a different GI doctor at the University of Iowa. Because of relocation due to advancement with my employer, I feel this change has been beneficial. My medication has been adjusted to Metronidizole from Asacol and my Azathioprene has been increased. I haven't felt as good as I currently do in a long time. I'm not quite 100%, but some days I feel as close as I can be!

I still am uncertain of what foods I can or can't eat with certainty and my fistulas are a constant cause of concern with me as they have not shown much, if any, sign of remission. I cannot eat raw foods such as nuts, fruits, and vegetables.

So, that's me in a nutshell. I am so much more than my illness, even though it consumes my daily life at times and is something that will always be a part of me. Whether I like it or not.
 

Trysha

Moderator
Staff member
Hello Isaiowa and welcome to the forum.
Sorry to hear of your problems but hopefully things will continue to improve for you.
You are now one of us and many people have undertaken this journey which has many twists and turns.
Some people find a diet to suit them and reduce symptoms, everyone is different in this regard.
Sometimes it helps to keep a food diary to pinpoint the ones that trigger symptoms.
It is good that the current medication is helping you.
Has anyone suggested Remicade?
This a a biological and has been found effective with fistula treatment and Crohn's in general.
Feel better soon
Hugs and best wishes
Trysha
 
don't forget to look at what you are drinking. Try to drink room temp drinks or warm foods; as they seem to be easier on the belly. No carbonated and no sodas, avoid alchol...pretty much drink water until you figure out your food sensitivies. Probiotics may help! Feel better!
 
Welcome! I guess the most important thing is seeing what works for you. It's a lot of trial and error (and lots of pain) but I found that keeping a food journal is helpful. I just made an ongoing note in my phone of when foods bit back. It's a fluid process, and adding and changing medications complicated the whole deal. It sure can feel like it takes over life, but you cannot let it consume you
 
Welcome to the forums! You've had quite a journey so far and I hope that things will continue to improve for you. The diet thing is a really tough question since everyone is different but a nutritionist can help you figure out which foods you should stay away from.
 
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