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Hello

Hello everyone,
I guess I will start out with my story then ask some questions. which after typing I apologize for how long it got.

So in mid-June of this year, I started having trouble with stomach and below. You know cramps, pain, diarrhea, fatigue, and all the fun stuff. Of course how I am and never really had any problems. Really I had a gut like a tank. Decided Ahhh its a bug and will leave it alone. Well after a few weeks and an uncomfortable wedding I had to attend out of town. I decided to see my family dr. Well of course its the week of 4th of July and everybody is on vac. So I finally get an appt. with him about a month or so after this started. My family Dr. shipped me right off to a Gastroenterology.

My gastro Dr. is a very nice guy listen and could tell that I had something wrong. I've lost 10 lbs in the month. Im 5'11 and weight about 185 when it started. He gave me zantec because since this all started I've been getting indigestion with any greasy, acidity, spicy food along with the other problems and he sent me right away to get a stool sample, which in a tiny cup is hard and I had to be creative. Plus try a couple of times. ugh....
So the very next day he called me and said it showed I have a c. diff infection and put me on flagyl. Well that med tore me up something fierce. horrible. I lasted 7 out of 10 days on it. The 7th day, was the cleansing for my colonoscopy which I had to stop the med because without any food I was cleansing before I even took that stuff. Wipe me out physically. From there he said it showed I have crohn's as well and would like to send me for more tests to confirm. He also gave me pentasa, and vancomycin which worked and agreed with me fine. two days later I had that Barium follow through test which the results show the ileum was restricted and what not.

To add to that mess, I started to get migraine headaches, the one where you get the aura of lights. By this time my symptoms where started to go and I was slowly becoming more regular then what the previous 2 months brought me. I talked with my dr and he said stop the pentasa for two weeks and see if they stop. If they do we will get you on something else and if they don't you should get checked for that too. Well after making it through the 1st week without any problems I though well that's it. Started getting back to eating. Haven't been doing much of that and found some safe foods and some not. but very small variety.

That's brings me to this week. Got another migraine, started pains and what not. I started back on the pentasa because I felt better on it before. I quickly came to conclusion by reflection and events that eased my migraines that it was from not eating or not enough food. So as I eased my migraine with a plain turkey Sammy. I somehow managed to chip my tooth and swallow it. Not sure if that had anything to do with this or if it was some of the other food I had before but the next night. It let loose. from about 1230am till 800am every 10 to 20 minutes. watery runs, fever, felt like I did 10000 push ups. headache, and a really bad hangover all combined in one and after that it was every 30-40 minutes till 6pm or so. I probably should have gone up to the ER because I was near passing out anytime I stood up from dehydration and lack of food, mind you I didn't have much in me to begin with. But I managed to keep kicking, and drinking Gatorade water and eating applesauce. Took 3 days to bounce back from that. Finally Sat. I felt well enough to get up and go a bit. I hate being idle. The dr. put me prednisone because I still maybe inflamed. I'm now down to 165.

I consider myself lucky in many ways and I am very thankful because I consider mine to be mild compare to many of stuff I read. I feel that if I have to live with this my whole life I need to take care of myself, try to get a well rounded diet and understand I may have to make changes to food I eat and drink. That's where I can use some advice.

What makes this even more of challenge is my job a career Firefighter. I commute 85 miles. We work a very tough sch. 48hrs on 72hrs off with a chance of being mandated an additional 24hrs for ot if we go below our minimal staffing. And the food selecting is not healthy. So I have to prepare and bring more but its tough to think 2 or 3 days in advance haha!

I've noticed that there is some food intolerances I developed. Milk and yogurts are a big no go. Red 40 in drinks. At least this last flare up. and the fact that something I don't digest and seem to come out the same they came in. Which never did before.

So hear are a few questions.

1. is that something pretty normal to develop food intolerances and not digesting certain things that you used to be able to.

2. A big one. how to you get over the fear of having a flare up. Its always on the back of my mind at work. and still eat. Is it trial and error and get over it or does it always seem to lay in the back of your head.

3. Another big one at least for me. For anyone that is very physically active. What do you do to keep weight on and energy to be active. I just can't right now it seems I maybe able to keep and seem to be gaining ground and I have a set back and drop a few pounds. A roller coaster ride. I know 20 plus lbs isn't a lot in 2.5 months but I lost a lot of strength and stamina. And I feel it. And I still can't get the energy to get back into a exercise routine. I am only eating barely enough calories for a day. I just don't have an appetite.

Thank you in advice
 
Hi,

I'm sorry you've been having a hard time but at least you are on track to becoming healthier and making this more manageable. Unfortunately, I was recently diagnosed after years of issues so I have yet to have the Barium test etc. But I am on Pantasa now and last week started steroids( but for the life of me can never remember the name). But I will try to help you with what I can.

For your first question. I always new spicy food wasn't my friend and dairy is a hate love relationship. The months prior to a diagnosis I noticed that even after eating a banana I felt sick and I always felt sick after eating. Prior to my diagnosis I did an intolerance test with a natural path ( but you can also do it with your doctor for FREE). They test a bunch of veggies, fruit, meat, dairy, wheat and fish products and shows what is an allergy and what level of an intolerance it is for you. I found out pretty much everything I loved I had a high intolerance( wheat, bananas, eggs, beans etc) and my body is in such rough shape I have an allergy to lamb, pork, beef, a protein in milk, cheddar cheese, and something else I cannot remember). I showed my GI my results and he said they arent considered true allergies, normally 3 months of cutting them out and getting retested will show that my intolerance to it has lessened. He also said every once in a while I can eat those foods but stick to a lactose free diet. I used to eat red meat, eggs, dairy etc all the time. I never expected those results. Overtime the intolerance developed and because I am so inflamed etc my body isn't tolerating a lot of things well.

So I suggest you look into getting the test done to get a better idea of what you are having trouble with. I'm sure you know of some things you are having trouble with and you know your body than anyone else so just avoid those foods the best you can. There are a lot of things that dairy and wheat is in that I wouldn't think of like soy sauce, fish and chips, etc. Also my GI told me to avoid processed foods so avoid the greasy stuff.

Hopefully this helps,

Marielle
 
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