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Chase0409
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 10/9/2008 12:26 PM (GMT -7)   
I was diagnoised with CD in March of 2006 I have had everything under control for quite some time now.  Just recently diagnoised with GERD also.  I take quite a few med"ications Omperozole, Sulfalazine,  Nortitriptlyn, Amitriptlyn.  I can't seem to stop gaining weight.  I was 160 when I got sick, I'm 5'8".  I have switched some meds I was up to 180 but now in the last 4 months or so since i was diagnoised with GERD i am at 216.  Any suggestions or has anyone had this problem?? 
 
Thanks
Chase

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 10/9/2008 1:25 PM (GMT -7)   
I have the same problem. Plus even there are times my 10 year old eats way more than I do... I just keep gaining....
 
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/9/2008 1:27 PM (GMT -7)   
There are a couple of crohnies on here whose body went into hording mode (as my GI calls it) when we got sick. I am one of those very few. My weight can still vary by 15 lbs in one day (on the same scale), even after 3 years of being on meds.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


karendee
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Date Joined Mar 2007
Total Posts : 1642
   Posted 10/9/2008 1:28 PM (GMT -7)   
Of course my body decides to go into hording mode and get fatter.... just my luck. My GI said something similar. It still does not help the pounds come off.

Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/9/2008 1:37 PM (GMT -7)   
I am in so much freaking pain that exercise has been putting me into the hospital with bleeding.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 10/9/2008 1:42 PM (GMT -7)   
Oh Navy I am so sorry... Exercise makes my Fibro worse sometimes but no bleeding....
I hope you feel better soon!
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/9/2008 3:44 PM (GMT -7)   
Adam, I went from running the Corp marathon at 150 lbs and six feet tall, to weighing around 300 lbs (granted I broke my back in that period of time) in a bit more than a year's time...which is really not good for a woman..let alone anyone..


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Osprey101
Regular Member


Date Joined Apr 2008
Total Posts : 227
   Posted 10/9/2008 6:08 PM (GMT -7)   
Read up on management of Crohn's in "Life Without Bread." It stands a good chance at knocking back your Crohn's, and will have a positive impact on management of your weight at the same time.

karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 10/11/2008 5:01 AM (GMT -7)   
Navy I am almost at the 300 lbs point and I don't know how I got there. I am so sick of this. And to top it off I don't eat that much. I kept a diary for 2 weeks and my Dr thought I was lying. I was not. I just need to exercise it off I guess. I have been more active and I am hoping this will help. It is awful being a woman this big. I am miserable....

Adam, being too skinny and being too fat are very different things. I am sure you could gain weight. Try drinking ensure with every meal. (a full meal) We had a friend with a son that was having a hard time gaining and the Dr told her to take pediasure put in the blender and add bananas, peanut butter etc. She would basically make smoothies with pediasure instead of milk for the extra calories. it worked right away!

Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 Started Humira June 2008 (have been on other cd meds)

Diagnosed w/  Fibromyalgia May 2007 on Soma and Lyrica

Diagnosed w/ General Anxiety Disorder in 2005- Effexor and Clonazepam 

 


Chase0409
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 10/11/2008 2:27 PM (GMT -7)   
Does any one have any solutions to this? Is there a way to turn off hording mode? My doctor has never said that. She thinks I'm gaining the weight from the nortitriptolyn it's also used as an anti depressant. I think that is why i'm gaining so much weight but if I don't take it I'm in soo much pain it's unreal. I have GERD as well as CD and I get heartburn so bad I could honestly put my fist through a way, i sweat and shake and nothing helps i have to drink water or milk until I almost vomit because it hurts so bad.

chase

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/11/2008 2:37 PM (GMT -7)   
Chase are you on meds for your heartburn...Like nexium or something. Plus when the pain is that bad I would think about getting a GI cocktail.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/11/2008 2:41 PM (GMT -7)   
Karen, gaining weight is not that simple for many of us, unfortunately. I can't tolerate bananas or peanut butter, or dairy or bread. So for some people it really is impossible to gain weight, even if we try.
Dx'ed in 1999. No surgeries.

Current meds: 100 mg 6MP. Just finished prednisone taper. Udo's Choice Probiotics (30 billion).
 
Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.


Chase0409
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 10/11/2008 2:51 PM (GMT -7)   
Yes i am on ummm Omeprozole, I have been on prilosc, achipex, and now omeprozole. I take sulfa for my crohns but i get heartburn from the GERD so bad that I have to take this nortitriptolyn every night before bed 50mg so it will relax my muscles in my stomach because there is too much acid in there and it heartburn makes my stomach spasm. I have so much acid coming up my esophgus is shrinking, I had to have it blown up with a balloon last month. I have had 2 GI cocktails and they did not work.

I know that a lot of people have a lot of trouble gaining weight, my dad had that serious problem when he was first diagnoised. But i'm sick of gaining. It's messing with me emotionally now. I'm afraid if i go off the meds i will be in more pain.

Chase

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/11/2008 3:20 PM (GMT -7)   
Rider, I think she knows that the norm for Crohns is not being able to gain weight. What is most problematic for those of us in the hoaring mode is that we are extremely abnormal for crohnies. Rider, is there anything you can eat?
 
Osprey,
Unfortunately I have exhausted that option, and ended up in the hospital for trying that, but thank you for the suggestion.

Chase,
Omeprozole is basically Prilosec. Personally I think it is a useless med for me. Unfortunately with this kind of hoarding crohns, it can sometimes cause slow stomach motility, and make your sulfa based meds act as an ingition point of your heartburn. This will also make you want to eat, because that is the only way to get the fire under control for a bit. For me to get my heartburn under control I had to switch to an injectable mtx and take nexium for six months.  Plus karaphate for the bleeding.
Hope this helps,
Navy


Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 10/11/2008 4:38:25 PM (GMT-6)


Chase0409
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 10/12/2008 2:06 PM (GMT -7)   
Navy, this totally makes sense on the wanting to eat when I have heartburn most of the time I get it when I have a completely empty stomach. So I either drink water or milk until it stops or eat something very bland. I never looked at it that way, thank you! I am going to see my GI on Friday, I will talk to her about this issue, hopefully she can help also. Thanks so much!

Chase

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/12/2008 6:15 PM (GMT -7)   
In the meantime I would try a flat sprite or 7up with some sort of safe food (like crackers/ bread or whatever is safe for you) with every pill, until you see her.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/12/2008 7:15 PM (GMT -7)   
Hi Navy. I'm eating gluten free, refined sugar free and dairy free for about 3 months now. My main carbs are rice, sweet potatoes and some white potato. I try some french fries every now and then. Eggs are iffy, they seem to be fine if they are used in a recipe, but not always great if I eat them on their own. I eat spinach and broccoli, and chicken, turkey, bison and fish.

So everything is pretty healthy, but that also means low calorie. From what I can determine, I eat about 1700-1800 calories a day which I know isn't much but I can't seem to eat more without eating like, all day constantly, which probably isn't good for my gut. I'm 5'9" male and 130 lbs.

BTW, depending on the results of my liver test I might be stopping 100mg of 6MP and starting 25mg injections of MTX. So I might be calling on you, if you're up to it (sorry that you're in the hospital). From what I've read so far taking 1 to 3 mg of folic acid and drinking lots of water should help?
Dx'ed in 1999. No surgeries.

Current meds: 100 mg 6MP. Just finished prednisone taper. Udo's Choice Probiotics (30 billion).
 
Betaine, digestive enzymes, Candicin (oil of oregano capsules), Beta Sitosterol.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/12/2008 7:34 PM (GMT -7)   
I take 5 MG of folic acid. They will probably taper down your MTX from 25 to 15 mg in a year's time, unfortunately MTX can screw up your liver too. No worries about me in the hospital I am a bad bleeder so this happens quite regularly. Plus I have othro injuries that they are working on. I am a big fan of hydration especially when you get a yellow spot (from the injection) every week.
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Chase0409
New Member


Date Joined Oct 2008
Total Posts : 11
   Posted 10/28/2008 9:03 AM (GMT -7)   
Navy,
  So I talked to  my GI on Friday. I told her about the Life Without Bread and she thought that was a good idea.  I have tried it for almost a week now. It's really tough.  72 grams isn't very many.  I will def keep tryin it, I want this really bad.  I talked to her about my meds and she cut my Nortitriptolyn in half and every other day she is trying to get me off of it.  I do have to say that I've cut it to every other day for about 3 weeks now and I feel less bloated.  So maybe this will work.  did you do the Life Without Bread diet?  Does anyone have any suggestions on meals because I'm getting a little sick of the same ole stuff.
 
Thanks guys
Amanda

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/28/2008 10:33 PM (GMT -7)   
I did scd, and the makers so please check out that link I will insert it at the bottom, but since I am a bad bleeder it really did not work for me. But everyone is individual and hopefully it will work for you. Did she switch any of your other meds? There are certainly other meds to try beyond Nortitritolyn if you still need it. Another simple thing to try is to sleep with your upper torso elevated. Don't do pillows or wedges found out the most effective thing to do is raise the entire bed. Like go walmart and buy the bed raiser and use two of them (added height)on your head side of your bed...make sure you get the really stable kind that you can stack easily.

http://www.healingwell.com/community/default.aspx?f=17&m=1262312
 


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 10/28/2008 10:43 PM (GMT -7)   
A lot or most of the time weight gain/loss has a lot to do with your metabolism changing...when I was younger I could eat what I wanted an as much as I wanted and not gain an ounce if I tried, this was before and even after crohn's...once I hit my mid 30's my metabolism changed quite drastically I now work at keeping the weight off with proper diet (but that's mainly to help my CD and IBS) and regular exercise (to aid with both maintaining my current weight and help with my CD and IBS)...Of course not everyone that hits their mid 30's has their metabolism change, it varies from person to person, some people have never been overweight their entire lives just as some have never been thin.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/29/2008 1:35 AM (GMT -7)   
Come on, folks, be kind. Being underweight is horrible. Being overweight is horrible. This isn't a competition to see who's suffereing the most: both can be indications that we're very unwell.

Please respect the fact that this thread was started by someone who was concerned about weight gain. It's a legitimate concern. If you are concerned about your weight loss, kindly start a new thread, and let this discussion stay on topic.

With thanks and best wishes,

Ivy.
Co-Moderator Crohn's Forum.


conorconan1
Regular Member


Date Joined Oct 2008
Total Posts : 245
   Posted 10/29/2008 1:41 AM (GMT -7)   
Hi Guys,

silly question, but have you all had your thyrod tested?

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/29/2008 6:56 AM (GMT -7)   
Thanks Ivy.

Conorconan Very Good Question! Oh yes my thyriod is out of wack (have to take levo for it, my TSH is about 10 right now) and thank you conorconan for remembering to suggest this. (sometimes I am on autopilot, and please make sure that your are absorbing it) I took the pills got nothing, got it by injection/iv now works better TSH is slowly coming down.

Plus I think this hording type of crohns seems to strike in the early twenties, so I do not think it is a age related methoblism thing. Plus as suddenly and as hard as it strikes, most of the time exercising is far too painful (I mean get put in the hospital cause you are bleeding so bad). As a former marthoner I certainly would not have stopped exercising unless I absolutely had to. Believe me I miss it. I encourage if you can exercise, please do. But that is not an option for me right now. Plus I think part of the problem is that my diet is so limited in what I can eat (it is milkshakes, soup, and jello). When people double their body weight (in a year's time) something serious is going on, more then just age related decline.

Please understand that when you are overweight with this disease you are devalued much more, because you do not have typical crohns. Partly because you are fat, it is automatically assumed that you do not have severe crohns. So it would be appreciated it people could hold off on the judgement about it.

What is ironic is I am about 285 today and have severe malnutrition (just cannot absorb certain things).
 
Did you all ever wonder about a fatty tumor?


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 10/29/2008 8:18:40 AM (GMT-6)


Brian DK
Regular Member


Date Joined Jul 2005
Total Posts : 41
   Posted 10/29/2008 7:56 AM (GMT -7)   
I can't imagine having this problem. I am sorry for everyone who weight issues because of crohn's. I am just most often used to hearing about people losing weight. A year ago I weight 190 and now weigh 170. My weight will change depending on how I am feeling and how much of an appetitie I have. Right now, I am barely eating. I can't really offer any help, but wanted to let you know that you are not alone with your struggles. I will add those who have weight gain issues to my prayer list. Good luck and I hope you can get things back under control.
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