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Crohn's and Colitis?

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Old 10-04-2010, 10:09 AM   #1
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Default Crohn's and Colitis?

I so I have had a really bad flair up over the last few months and finally am feeling better.
I have always been a fat Chronie even in the worst of flair ups I never lost a lot of weigh.

In the last year before my flair up I was able to drop 30 lbs (yeah) but since being back on meds (6MP and pentasa) I gained back 4 and I can't seem to lose anything. I work out every day, keep my calories around 15-1700 which is what I lost on and I have a caloie deficit daily of at least 500 calories (1lb a week). I am afraid to drop my calories much more since

just venting as I think my meds are trying to get me to gain weight and all I can do is maintain. I really want to take off the last 15 (now 20) but I am not sure what to do. Any others trying to diet on IBS, chron's/colitis drugs?
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Old 10-04-2010, 03:04 PM   #2
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Hi owned by Dixie I also have Crohns Disease. I'm sorry you are having weight issues. I truly know how you feel.
I have had Crohns for 20 years. I will be 49 in a few weeks. I also have been an overweight crohnie. Years ago I weighed 250. I was so sick with the Crohns I could not eat. I lost down to 140. Then Crohns was discovered. My doctor started me on prednisone. By the time I was able to come off the pred. I weighed 260+ From that point on everytime I would try to lose weight no matter what I did the scale just would not move. I also have had a complete hysterectomy. I thought not being able to lose weight was because of that and not the Crohns.
Earlier this year I changed GI doctors. She was questioning me about my diet. She ran complete blood work on me. She found out I had an inactive thyroid. Hypothyrodism. She started me on the replacement medication. I lost 8 lbs. almost immediately. That was June 2010. I decided to start counting my calories (I do calorie cycling). I have lost 47 lbs.
The Crohns is still a daily problem but I will keep working on this weight. Do you think it could be a possiblility that your thyroid is inactive? Maybe you could have your doctor check. I wish you success in your weight loss And I hope your Crohns gets under control by your meds. Isn't this a horrible disease!? I hope they find a cure soon!
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Old 10-04-2010, 09:15 PM   #3
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thanks for answering me!
I have had Chron's colitis for about 25 years. I have been lucky to not have any surgery or strictures so knock on wood!

the meds help and no, my last thyroid test was normal. I too count calories and just can't seem to lose right now (160) I would like to get to about 145 eventually if it happens but I think my issue right now is B12. Dr. is running the test today.

Anyway, I did find a great community at healing well, check the out if you are looking for support. I was just hoping to find others with weight issues and Chron's.

Be well, welcome to the boards and good luck in your WL journey!
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Old 10-04-2010, 09:44 PM   #4
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L ~ what is the name of that HEALING WELL site? You can just write out the name of the site like this ... Healingwelldotcom, if needs be. I am interested in what they have to say ... thanks!

BTW, at only 160 lbs, you are doing well, if you only have 15 lbs left to lose; maybe just up your exercise a bit each day becuz everything else sounds fine ...
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Old 10-04-2010, 11:51 PM   #5
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yes I love the healing well website. Just want to be healthy...you have it right in your post. It made me realize there are so many people dealing with this illness. L...I also have B/12 issues. I use the nasal B/12 spray. (one less pill) I wish you good health
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Old 10-05-2010, 08:47 AM   #6
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www.healingwell.com
they have a ton of sub forums depending on your issues.
I would love to up my exercise. Actually my goal is to able to jog. My problems are that I spent a lot of years on prednisone and I am always anenic so exaustion is a big issue with Chron's.
I do manage to get in my 10000 steps daily and usually an hour or more of moderate exercise. Still doing, just need to figure out how to do more and if the Crohn's is preventing me from losing.
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Old 10-05-2010, 09:37 AM   #7
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Hi, I don't have Crohns, but have a daughter who does. I am therefore aware of the additional challenges that you are faced with.

You mentioned that you stay between 1500 - 1700 calories. Right there could be your issue as far as not being able to lose weight. Have you tried keeping your calories to strictly 1500, maybe even 1400? Why not experiment with this for a few weeks and see where that lands you?
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Old 10-05-2010, 09:56 AM   #8
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Robin,
I am sorry about your daughter. Not sure how old she is but the meds and treatments along with knowlage of the desese is becoming much better known. I hope she has an easy time of it. I found for me that hormone fluctuations were the worst. IE post pregnacy was awful as was being on any form of birth control. my teens and 20's were bad and my 30 were a lot easier. this current flair up is my first in 12 years.
As you may know with your daughter there are foods one can not tolorate and that is different for all C and C people. it depends on what part of your intestinal track does not work. for me I am coming off a huge long flair up since last January, and some days i just can't eat veggies/fruit or high fiber so my food is a little more coloricly dense. I also should point out that I am NOT on a fast track to lose. it has to be slow as to not set off the C&C and alow the ulsers to take hols again with not enough food through the intestinal track.

I have a BodyMedia Fit (body bugg) which tells me how many calories I burn and based on my intake and out put I should be losing. But I am not so I uess I have to be ok with maintaining for now which is far better than being in a flair up!
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Old 10-05-2010, 11:18 AM   #9
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I don't have Crohn's but my husband does; he has the fistulizing kind which is kept under control with Remicade. He is also overweight and can't seem to slim down. Although, sometimes I see this as a blessing as before he got his DX, he was dropping weight like a rock, with no explanation. He is not grossly overweight, but he feels he is "fat". I do believe that most of the medications he is on have the side effect "weight gain". In addition to Remicade, he is on Pentasa, Lyrica, Valium, a cholesterol med, and another anxiety med whose name escapes me at the moment. Top that all off with now the addition of steroid shots to control out-of-control eczema and he is a mess.

L: I think I recognize your dog from Healing Well. I don't post there, but I joined there when my husband first got DX'd. I do go there a lot to look up information, like when he developed the eczema...sigh, poor guy.
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Old 10-05-2010, 01:54 PM   #10
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I read a lot at Healing well but maybe have posted a few times.
I take take pentasa, works a miracle for me and slows down my digestion from 4 hours to a more normal 24.

the eczema may be related to the Chron's, poor guy. SO NOT A DOCTOR but they are using a drug called Humera (sp) that looks like it works for eczema and chron's.
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Old 10-05-2010, 02:28 PM   #11
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Quote:
Originally Posted by L144S View Post
Robin,
I am sorry about your daughter. Not sure how old she is but the meds and treatments along with knowlage of the desese is becoming much better known. I hope she has an easy time of it. I found for me that hormone fluctuations were the worst. IE post pregnacy was awful as was being on any form of birth control. my teens and 20's were bad and my 30 were a lot easier. this current flair up is my first in 12 years.
As you may know with your daughter there are foods one can not tolorate and that is different for all C and C people. it depends on what part of your intestinal track does not work. for me I am coming off a huge long flair up since last January, and some days i just can't eat veggies/fruit or high fiber so my food is a little more coloricly dense. I also should point out that I am NOT on a fast track to lose. it has to be slow as to not set off the C&C and alow the ulsers to take hols again with not enough food through the intestinal track.

I have a BodyMedia Fit (body bugg) which tells me how many calories I burn and based on my intake and out put I should be losing. But I am not so I uess I have to be ok with maintaining for now which is far better than being in a flair up!
My daughter is just shy of 23. Was diagnosed about 3 1/2 years ago. She's on pentasa. The doctor also recommend Humira, but she's not been on it yet. She is newly married and on BC. Was not aware this could affect her Crohns. And also post pregnancy. Thanks for the heads up. We are very aware though of the food challenges. Especially regarding produce. It is quite difficult at times.

About your body bugg and the correct caloric number to lose weight on, well I wouldn't hold much ummm, weight to it. It's really just a guesstimate. Those things tend to estimate on the high side, which would explain while you're not losing.

I agree that maintaining is better than a flare up - by a lot.

I checked out that healingwell website. Something tells me I shouldn't have. Read about too many symptoms and variances of the disease.

I'm glad you're long flare up is over. And hope that it or any others never, ever return.
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Old 10-05-2010, 02:36 PM   #12
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Quote:
Originally Posted by L144S View Post
I read a lot at Healing well but maybe have posted a few times.
I take take pentasa, works a miracle for me and slows down my digestion from 4 hours to a more normal 24.

the eczema may be related to the Chron's, poor guy. SO NOT A DOCTOR but they are using a drug called Humera (sp) that looks like it works for eczema and chron's.
Yep, we are aware of Humera; he is hesitant to change from Remicade at this point though. Remicade is working well for him for the fistulas, so he doesn't want to touch that. He just got his first steroid shot shy of one week ago. So far it is keeping the eczema at bay. He has not had to bandage his hands in almost a week, Amen!

Right now though he is having few bad Crohn's days in row. I am hoping that it's NOT the shot.....

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Old 10-05-2010, 03:30 PM   #13
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the steroids will help the crohn's.

Robin,
as for the BMF it helped me lose 30 lbs, I know it is not 100% but it is a tool that gives some insight as to what needs to get done. in the long run it has been the cheapest program I have done. I just think I am at a stall because of the drugs.

I hope you daughter has an easy go of it. my worst flair ups were after giving birth with the huge hormone drop, althoug pregancy was easy fo me.

I agree about the HW site. there is so much info but the good news is that it is a very active site so questions get answered fairly quickly and somone els is going through what you are.

I am curently taking domething called 6mp. it is a chemo drug, ment to supress the imune system, hopefully to somthing normal so my body can heal. the down side is the blood tests every 6 weeks. Saw the dr yesterday and could trace back this flair up, not with 100% accuracy that the flu shot I got last fall was most likely too much for my system to handle. first one I ever had and NEVER again!

Hey and thanks for the support everyone!
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Old 10-05-2010, 03:53 PM   #14
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Quote:
Originally Posted by L144S View Post
the steroids will help the crohn's.

Robin,
as for the BMF it helped me lose 30 lbs, I know it is not 100% but it is a tool that gives some insight as to what needs to get done. in the long run it has been the cheapest program I have done. I just think I am at a stall because of the drugs.

I hope you daughter has an easy go of it. my worst flair ups were after giving birth with the huge hormone drop, althoug pregancy was easy fo me.

I agree about the HW site. there is so much info but the good news is that it is a very active site so questions get answered fairly quickly and somone els is going through what you are.

I am curently taking domething called 6mp. it is a chemo drug, ment to supress the imune system, hopefully to somthing normal so my body can heal. the down side is the blood tests every 6 weeks. Saw the dr yesterday and could trace back this flair up, not with 100% accuracy that the flu shot I got last fall was most likely too much for my system to handle. first one I ever had and NEVER again!

Hey and thanks for the support everyone!
About the pregnancies, obviously all medications will have to be halted when she is ready to try to conceive. Did you do that as well and was it a problem for you??

And my daughter's doctors always advise her to have the flu shot since she is more susceptible to getting it and to have complications from it, given she has a weakened immune system. You never know what the right thing to do is....
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Old 10-05-2010, 04:30 PM   #15
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actually those with autoimmunal probelms usually have an hyper immune system. in th case of Crohn's the imune system is causing the body to turn on itself.
When a normal person gets a cold the body will send in one little army to combat the problem. hyper immune will send in 10,000 to do the same job. once the problem is take care of it starts to turn on itself. you may notice that your daughter does not get colds the same way you do. she may stil get them but they will last a lot shorter.

As for going off of drugs for pregnacy, again not a doctor, but I am reading that some of the ASA drugs seem to be safe and some will stay on them. back in the dark ages we had prednizone and sulfer drugs. so I did go off drugs.
I have also read, again because of the hyper immune problems that pregancy to the body can be concidered "foreign" and again the body can fight the pregnacy for that reason and lead to misscarrage. I had 2 and 2 pregnacies to term. the OBGYN should be aware of her issues and meds along with her gastro to be aware this is something she plans on doing so she can be ready and she could be concidered high risk. My OB and Gastro were absolutely on the same page when I did this 17 years ago. Also keep in mind that everyones desease is different.

Gee I hope I have not scared you! information is power and one with any medical problem has to go into anything with eyes wide open.
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