Summer barbeques

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jennskotniski
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/30/2008 9:25 AM (GMT -7)   
I was diagnosed in December with Crohns disease. I had an appendectomy last august that showed Crohns changes and then I had the Prometheus IBD test that came back positve for Crohns. I just finished 4 months of entocort and have been on Asacol since dec. My colonoscopy, Small bowel follow thru and all my other labs have been normal. I have a mild case with constant right lower quad and swelling. I dont have alot of D, but go more than a few times a day. I am thankful I have a mild case. My Doctor is very supportive. He gave me Ultram for headaches and pain and I was suffering taking tylenol which doesnt help anything. He gives me something for the nausea I have. I have gained about 10 pounds due to fatigue and the fact that when I get nauseous I eat carbs continuously. Anyhow we had my stepsons graduation party. It was the first time I have been at a summer party since I have been diagosed. After many Draft beers and food that I am sure was not at the right temperature I have been sick for 2 days.  Is this a common thing? I am thinking I have to stay away from food at these things. I know alcohol also irritates my symptoms so I am sure that contributed to it. Also does anyone have any advice for loosing weight. I went on wt watchers a few months back and it put me into a bad flair. I used to be very active and havent been lately due to fatigue. I do workout every day I feel good. Which is usually a few days a week. I try to walk everyday on lunch regardless of how I feel. I also get up at least 2-5 times a week and walk about a half an hour in the morning. I have meds for the nausea to control the grazing when I get that feeling. I would appreciate any advice on any of this! Oh and thanks for all your posts I am on the site almost everyday and when I am not feeling good I always search for similar expiriences. My heart goes out to all of you.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/30/2008 9:46 AM (GMT -7)   
Welcome to the forum Jenn !!

Earlier today, I bumped up a topic titled: "Do you all know what trigers your CD flares??" There is some info in there that might be helpful.

I'm not sure how WW would cause a flare since you get to choose your own menu . . . so that's a bit confusing. But the walking "can" cause trouble IF you are already inflamed. . . so you might want to rethink exertion while you are in a flare.

*sigh* Some of the meds aren't friendly to our weight . . . so we just have to be extremely aware of everything we eat vs. how much less we are able to be active. Its the old calories in/calories out dilemma. If you have water weight, you can watch the sodium in foods. Most prepared foods are WAY higher than those you prepare yourself. Cans, boxes, mixes, prepared frozen meals . . . are almost all OD'd with sodium. If you can tolerate fruit and veggies (some here can't) they work well to help with appetite control as does getting enough water. I struggle with my weight too and for me it is mostly a mental game. *sigh*

Glad you found us!! I'm sure some of the others will have much more help.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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jennskotniski
New Member


Date Joined Jun 2008
Total Posts : 4
   Posted 6/30/2008 9:56 AM (GMT -7)   
My doctor thought it was the fiber. I tried to modify the diet as best as I could and it still didnt work. I used to eat a ton of fiber. I would eat kashi ceral for breakfast and lunch and fruit and veggies for snacks and One I was diagnosed My Md told me not to. It did help with alot of the symptoms I was having. I always thought I had IBS/ and endometriosis.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 6/30/2008 9:59 AM (GMT -7)   
Hi Jen:

Welcome to the Healing Well family.

My first obstructive episode came on hours after eating barbequed steak, so I get where you're coming from. I find I can eat food from the barbecue, but not barbecued food -- as in hamburgers or steak etc smothered in sauce. it's the sauce that gets me I think. Of course most barbecues come with salads and alcohol. Both can wreck havoc on my system.

Sounds like you have your symptoms well under control. That's great, but just remember that even when you have mild symptoms the disease can sometimes still be active at the cellular level. For some of us with "mild" crohn's the impacts are only appreciated years later when we end up with fibroid strictures from chronic inflammation. That's my story and that of a few others on the board. I was seriously undermedicated in the first years with this disease. Because I was afraid of the side-effects of drugs i minimized and under-reported symptoms and just sort of toughed it out. The problem is that I was on a slippery slope of wellness. I used to tell the few people who realized I had crohn's that, "I'm one of the lucky ones. I only have a mild case."

I lost ground very slowly, had few fulminate episodes, just malaise that grew gradually more pervasive. It wasn't until I started suffering obstructive episodes five years after diagnosis, that I woke up to the damage that had been done inside my bowel. It's always a balancing act between drugs and symptoms. That's why I'm a big believer in keeping journals of foods and symptoms. Doesn't have to be all the time, but whenever i start thinking I'm not feeling as well. I activate my journals and take the time once a day to jot down what I've eaten and what kind of symptoms I'm having. It has served to keep me rooted in reality over the past few years and it has helped me be more effective when discussing treatment with my physicians. With the journals, it's hard to lie to myself about how well I reallly am. There's the proof right in front of me. It forces me to act more aggressively than i used to and I think I'm better because of it. I up my medication or change my diet much sooner and I'm usually able to turn around the symptoms much more quickly.

As far as weight gain and diet goes, I can only sympathize. For years I was so chronically sub-pare that I became deconditioned and couldn't maintain an exercise schedule. It was like a viscous cycle. When I felt able I would exercise, always over-exerting for my level of condition and then crash and burn. And always inside my head, when I didn't have the energy, I would tell myself that I was lazy. Never sick.

I am thankful for interventions from my disability insurers and others who insisted on a proper rehab program after my last surgery in 2005. Since then I have changed my thinking and become more patient and more forgiving. My advice to you is to stop focussing on the weight and focus on wellness. Do something everyday that contributes to wellness -- at whatever level you are at. If it means only a 10 minute walk that's grand. If it's an hour at the gym, great. But only do what you can do.

That's what's working for me right now. Hope you can find a balance that makes you feel good about yourself too.
Belleenstein:

30+ years living with Crohn's.

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