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CHELELEIGH Posts: 3
5/22/10 11:46 P

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hello

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FITLIFE40's Photo FITLIFE40 Posts: 62
5/16/10 12:02 P

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Hi I'm Andrea..
I tried to introduce myself in a new post but only 1 person said hello :( So I am re-posting here.
I have had IBS for years, but now I am doubting if they had made the right diagnosis back then (they never did pathology during the last colonoscopy to rule out anything)...so I had a colonoscopy 1 1/2 weeks ago, with a new Dr. :) and pathology came back that its microscopic collitis (at first the Dr didnt know what type, but now we know). I am now on asacol 3 times a day which has slowed down the running to the potty symptom I have had for years, so thats great. But the tenderness, fatigue, and reacting to foods is still there. Tramadol doesn't seem to help, just makes me dizzy.
What foods do you all eat? Is anyone on the SCD plan? I am already lactose intollerant, what do you eat during a flare? How do you have family meals?
I really need some direction. I don't even care about the scale at this point, I just want to get this under control first.
Overwhelmmed,
Andrea emoticon

Edited by: FITLIFE40 at: 5/16/2010 (12:12)
People will forget what you said, and people will forget what you did, but people will never forget how you made them feel....so make a difference!
JJDUGUAY Posts: 13
4/17/10 8:22 A

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Yes, prednizone will do that to you...it's very hard when you're hungry all the time and you can't eat veggies :( I always go for the carbs and that's why I put on the weight. Try to distract yourself with something else - like diet pop, sugar free candy, a walk and water....

I've never heard of those injections - is in Humira ?
Is it a different drug in the US - I'm in Canada :)

I hope you get better soon...unfortunately welcom spring....welcome flare up :(

MSUNEK Posts: 77
4/16/10 2:38 P

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Thanks. I am doing pretty good these days, I am getting Cimiza Injections and on prednisone (i hate it) so i put back on a few pounds but i am okay with it... the steroids make me eat like food is going out of style =)

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JJDUGUAY Posts: 13
4/16/10 2:35 P

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Hi there

You are not alone. I have 3 sets of clothes as well, but I don't think I'll ever be able to fit inot the one set again :) But I also have comfy clothes :) Your weight is difficult with crohns and the diet combination as well as the drugs that sometimes have side effects that are not that nice either. I am currently taking Imuran - but have taken prednison (which is realy nasty) Asacol, Saolfalk etc. all drugs to help keep flares at bay.
It's a complicated disease - and as far as diet goes everyone is different. I don't do any raw veggies any more, stay away from alot of fruit (skin) anything greasy, spicey etc. Id be happy to answer any direct questions if I can.....I've been at this now since 2004. So far I've had 3 surgeries :(
Currently I am 180 and I want to go to 150 !!
Keep in touch. :) Take care

MSUNEK Posts: 77
8/25/09 12:53 P

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Hey Everyone, My name is Unique and I have been officially diagnosed with Crohn's Disease (8/2009)... I originally thought i had IBS but the extreme pain i was experience became over whelming and forced me to visit the emergency room where at CT scan found swelling of my colon and lower bowel. From there test after test have been pointing towards Crohn's. The pain has been escalating and i am finally on medication big dumb horse pills =( i am looking into alternative medicine as well as dieting and exercise to reduce the amount of flare ups because i am SOOOOOOOOO tired of the pain. As a lifetime "big girl" the illness has helped my shape ... I place a lot of my weight loss on the diet changes i have made such as eliminating beef and pork and soda completely also smaller portions. Since April of 2009 until August (now) i have lost about 40 pounds (depending on the scale) i went from size 26-24 to a size 18 (way too excited about this) but the weight loss is bitter sweet... i'd trade in my 18 jeans for my 26's for a clean bill of health =)

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BERRYWRAP's Photo BERRYWRAP Posts: 93
3/9/09 10:11 A

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Hi All,

I am not so new to SP, but I am new to this team. I didn't think there were anyone with the same issues that I have.

I was diagnosed with Crohn's disease, one week before I had surgery to remove a portion of my intestines and colon. I am still trying to figure out my disease and how it affects me.

I do know that I my weight is like a yo-yo as I seem to have an attack at least two weeks out of a month. My 'doctor' didn't put me on medicine she wanted me to try diet and exercise, but that does not seem to be working. If anything it depresses me more, because I have 3 sizes of clothing in my closet. I have the "pre-surgery" clothes, the "during an attack" clothes and the "I feel normal today" clothes.

I know this is a long post, but I have so many questions for those of you suffering.

Such as how has these conditions affected your weight loss? Does it lower your motivation? What have you found to help you with your weight loss goals while having an attack?

I look forward to speaking with all of you. Maybe I can get a few suggestions for medicine so I can talk with my doctor. I shouldn't have to suffer this much.

Never Give Up, Never Surrender!


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SILLYYAK's Photo SILLYYAK Posts: 71
3/7/09 11:02 A

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Hello everyone! I am Anna and i'm kind of new to the web site. I am diagnosed with Celiac Disease since March 2007 and Mircosopic Colitis since June 2008. I currently eat a gluten free diet and take the drug Entocort. Entocort is a steriod and I am VERY scared that is is hinering my weight loss. I was on a 12 day course of Perdnisone and gained 15lbs! I have managed to get 6 of them off, but i've decied to get serious about it and joined spark.

I look forward to my docotr starting to wean me off entocort and my colitis staying in remission. I'm on the drug and have no problems like i did before. Here's hoping normal sticks!!!

Good luck to all of you in your Chrons and Colitis battles and your weight loss!

Edited by: SILLYYAK at: 3/7/2009 (11:03)
Find the strength to love yourself,
Find the foods that loves your body ,
Find the person who loves you no matter what.


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POWERCHICK's Photo POWERCHICK Posts: 3
2/19/09 11:10 P

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Hi, my names megan i'm 19 years old and i was diagnosed with ulcerative colitis a little over a year ago. My disease was extremely aggressive and last fall I was forced to drop out of school to have surgery. The pain and long term risks are gone, but most of the effects remain.

To Laurie,
Have you considered a drug called lialda? Its an FDA approved Mesalamine that you're only required to take once a day. The 2 doctors I consulted saw only negligible difference between this and other similar drugs (but take you own doctors recommendation over mine). The pills are bigger, so its a trade off but its probably worth looking into.

MLAMON Posts: 35
1/27/09 12:25 A

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Hi Laurie,
My name is Melody and I can give you insight into being a spouse of some one who suffers from Crohn's or Colitis. It's not easy to watch some one you love sufferso bad, and it's even more frustrating to watch them not listen to the doctor (I know that Tony is that way at times). I know it has got to be a pain in the behind taking all the pills but it has got to better then the alternative. If you need to bend an ear this is where you can reach either of us. I am online alot (going to online college) so I'm easy to reach. Good luck with both the weight loss and the medical things. WE are here if you need us.

TLAMON Posts: 11
1/26/09 11:02 A

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Hello,

Laurie your doctor is right you really need to take your Med's as prescribed.

On the really bad days instead of eating a lot of bread try ensure. It's not bad, not great either, but you will get the nutrition you need, jello, pudding, pretty much anything soft. Just pay attention to your nutrition. use your nutrition page faithfully.

These diseases demand active participation by us. Your going to have bad days no matter what you do, it's the amount and severity of the bad days you can control.

Do what your doctor says. I have had Crohns disease for 24 yrs, and yes I get tiered of the pills, and when I have tried to limit them I have paid for it.

Thanks for joining us, and I look forward to hearing more.



KIAMUDDESS Posts: 10
1/25/09 8:07 P

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Hi, I'm Laurie, I have something called "microscopic colitis" (still not exactly sure what it is). I don't think it's the same thing as the ulcer colitis the folks in the other colitis group are talking about, as while mine is unpleasant at times, it isn't something that requires surgery. Anyways, I would like some suggestions from others who may know more about foods that can help. When I have really bad days it doesn't seem to matter what I eat, but eating a little bit of bread with each meal does seem to help. Which can be a challenge when you are trying to lose weight and find that bread isn't that great for you. I also want to know if anyone has had any luck with fiber, or if it makes things worse. I have been slowly trying to add it to my diet to help lose weight, but I'm not sure what the recommended fiber intake is for folks like me with colitis. I suspect I have had colitis since my early 20's (I'm 30 now) but was only diagnosed with it recently. I also have hypothyroid disease. Thanks for any suggestions you can give on foods and supplements that may work for you. I think the worst thing about having colitis (besides a constant fear of having to use a multi-stall public bathroom) is the pills they want you to take. I am supposed to be taking three pills 3X a day for a total of nine pills, but I get so sick of swallowing them, I usually only take 3 to 6 per day. My doctor tells me they really won't be effective unless I take the full 9 pills a day, but dang. I am just so sick of those horse-pills. I take other pills for my thyroid disease and I just can't stand taking so many. Anybody else struggle with that? I'm glad you started this group.

-Laurie

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TLAMON Posts: 11
1/23/09 4:38 P

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Hi glad you could join me. My Name is Tony and I was diagnosed with Crohns in 1995. I am 38 and I am attending college at Axia college.

I enjoy the outdoors, food, and being involved with the Crohns and colitis foundation.

Not only am I a team leader for this team; I am also a team leader for the take steps walk for the Crohns and Colitis walk being held in April. You can see and join my team there as well at www.cctakesteps.org and look for team Tony.

It will be great to meet other people affected by the same disease. Look forward to getting to know you all. emoticon

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