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ANYONE ON REMICADE, HAVE PROBLEMS WITH GAINING WEIGHT? Feed back would be appreciated! :)

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Ulcerative Colitis
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Posted 3/21/2010 10:36 PM (GMT 0)
Hello dear friends,

I have not written on this forum for a long time.
The Remicade has helped me symptomatically quite a bit.
I can eat beef, and almonds and other foods high in fiber.

But my body weight is horrible. I am 134 lbs. 6'1" in height.

My gastro-enterologist is puzzled, because usually he sees
that with improvements in symptoms, the body recovers
the weight.
In my case, I've been scoped, and according to the gastro,
my response to the Remicade, has been exceptional!
His own words were, "If I didn't know any better, I would
think this was a perfectly healthy colon."

But despite this apparent improvement in my colon, the rest
of the body, has not recovered. I have not gained any weight.

People said to give it time, and that it may take some time, but it's
been over 1 year now.

So I am wondering, what other people's experience has been with
this drug?
If there are others, who receive Remicade, but who have not been
able to regain their previous weight?
If there are any suggestions for gaining weight?
If there are people, who have had the surgery, and were then able
to gain the weight back, but were unable to do so, even while
on this drug, or others?

My doctor is puzzled, and I too am at a loss. I would prefer not to go for
surgery.
But I would not want to live the rest of my life, in the physical condition
that I am in right now, despite how good my colon might appear when
scoped.

I think we're all after this thing called "health". And having no symptoms,
but being in a body, that is very thin and low on weight, does not seem
ideal or healthy to me.

Any feedback or suggestions would be GREATLY appreciated!

Thank you all for taking the time to read this, and please feel free to respond!

Sincerely,

Tal
Posted 3/22/2010 7:20 PM (GMT 0)
I'm sorry that I have no advice to offer you........I was just wondering how your weight was before you were diagnosed? Were you underweight? I am asking because although my daughter has always been slightly underweight, after diagnosis with UC she was able to maintain her weight, 6 months after being diagnosed she started remicade, at first it put her into remission but after her third infusion the bloody diarrhea started again. She stopped remicade after 6 months of treatment and has not been able to maintain her weight since then.
Posted 3/22/2010 10:40 PM (GMT 0)

Hi there!

I have been on Remicade since June of last year and with great success. I am a bit concerned about the weight loss I have had but I contributed it to coming off of steriods. You are definitely way underweight... do you feel tired or fatigued? Are you eating a balanced diet? I am 5' 2" and my normal weight before steroids was about 120. On steroids it went up to 130 but over the last few months, I have fallen below the 110 mark. I seem to be hovering around 108. I was concerned also about the weight loss, as I could see that I was losing weight quickly. At first I was excited to get rid of the round moon face but it hasn't stopped yet. I work out regularly and stopped doing cardio like I used to to avoid losing more weight. I have definitely added alot more fatty foods to my diet - like brownies, ice cream, protein shakes to try to keep my weight where it is. It's the first time in my life I have tried to NOT lose weight!! I have a post from my sister who is a registered dietician. I'll find it and post it for you. If you FEEL good, that is the most important thing. I have noticed that my metabolism seems to be higher because I'm always sweating and sometimes have anxiety. I contribute that to the Remicade. Let us know how you're feeling!

Posted 3/22/2010 10:47 PM (GMT 0)
Here's my old post! Hope this helps you with the weight loss and move to weight gain!

Hi Group!

I am currently going through the same weight loss, down 20 lbs in the past 3 months. 5 foot 2 and 110 lbs and losing weekly. Here is some advice from my nutritionist (also my sister). She's a Registered Dietician...


I absolutely see your concern, but let me assure you, you are in the best possible position you can be in with your IBD. yours is at the lower end of your large intestine, which is good because most of the vitamins and minerals are absorbed in the first part of your small intestine...right when it leaves your stomach. so i don't think you are malnourished. that's not to say that the large intestine doesn't absorb nutrients, because it does, but if a person is gonna have IBD, the best place is at the end of the large intestine. so in a nutshell, you are at an increased risk for malnutrition because of your IBD, but you are otherwise healthy and in physical condition to make up for things that you are lacking, whether it be calories, or vitamins... if you were 65 and a mess, you would probably be on a downward spiral-healthwise. this is why it's important for you to stay as healthy as you can, by exercising, eating right, and taking your medicines as directed (sounds like a commercial).

the remicaide is kind of like chemotherapy, so it is probably inhibiting your appetite more than you realize. and that and your other medicines could be inhibiting the absorption of some things, but the doctor would be able to tell by looking at your blood work. there is a protein called albumin that they check in the blood and it is a very clear indicator of malnutrition. because of your IBD, it would be normal for it to be decreased some, but the normal range is 3.5-5.0 gm/dL
some physical signs of malnutrition COULD be changes in hair color, pale eye membranes, redness and swelling of the mouth, swollen bleeding gums, purple tongue, decreased taste, slow wound healing... you might feel more tired than usual, weak...
like i said, you are at an increased risk, but you're in good shape right now...it's just important to keep you there. and you won't have any problem with that.

An increase of 500 to 1000 calories a day will promote a one to two pound weight gain per week.
so planning is important. plan for 3 small meals each day and several snacks. to increase calories, try not to eat low calorie or no calorie foods and drinks. so instead of diet drinks or water; drink fruit juice, milk, and shakes. get a higher fat milk-like if you drink 1%, get 2%. get regular yogurts instead of light. eat peanut butter and jelly or peanut butter and crackers for a snack-that's high calorie. dried fruits and canned fruits packed in heavy syrup increase calories with just small amounts. grab high protein granola bars for a snack, boost-you can even make shakes with the boost if you wanted. get some frozen fruits and blend with the boost. eat creamed soups like cream of potato or broccoli cheese cause they are higher in calories than broth based soups (like chicken noodle, or vegetable). nuts are high calorie, high protein. get some little snack bags of nuts, chex mix with nuts for a snack. use regular miracle whip for tuna salad instead of light miracle whip. just some suggestions :)
Posted 3/23/2010 6:02 PM (GMT 0)
I would like to thank both shortstuff1, and wishingtohelp, for your replies! :)

Wishingtohelp, I was very healthy, about 170lbs, before this illness came about. Which was 3 years ago.
I dropped to about 150 and stayed there on the Salofalk (5-ASA's) for almost 8 months, but then flared, and was hostpitalized. After being discharged, I was put on prednisone, which made me gain weight (went up to 160lbs was very happy!). But my GI tried to put me on Imuran, and tapered the Pred. I flared twice. He ramped the prednisone to 60mg, which was more than I was taking in the beginning. But the weight did not return.
I hovered around 140lbs.
Remicade has been the only drug, that has brought some stability to my colon. But the weight gain seems to be an issue.

Shortstuff1, you're awesome! Thank you for the informative article on weight gain. I will get that protein checked out.

I think I eat pretty healthy. For breakfast, I have french toast, or oatmeal w/ apple and whole wheat bread. I then nap, and then have cereal, with 2% milk, a muffin, and cottage cheese w/ almonds.
I'll have a dinner, with meat, either beef or chicken, w/ pasta, rice, or mashed potatoes.
And in the evening time, as a night time snack, I usually consume soy milk w/ cheese cake, 1 pecan butter tart, and again cottage cheese w/ almonds.
So I think that's quite a few calories, yet it has not done anything for my weight.

Before the illness, I've always had a fast metabolism. I could eat half a pizza, and still had room for chicken wings. I was a big eater. But never really gained weight. Now with this illness, I cannot eat as much as I used to, and nothing seems to be helping me to gain weight.

Shortstuff1, just so you know, the Remicade does affect your calcium, regardless of claims to the contrary. Have a bone density scan done. As you will notice the more you're on the remicade, the more there may be bone aches, etc.
I agree, the prednisone started the bone loss, as my bones are now osteoperotic (confirmed by bone density scan, and due to being on Pred for nearly 1 year). But the remicade also affects the calcium. I could feel it. I thought things would magically improve when I got off the pred, but being on remicade for over 1 year, I've now had to seek a bone specialist, and load up on dairy.
Just an FYI! :)

Again, thank you both, for your replies!

My heart goes out to everyone!

Sincerely,

Tal
Posted 3/23/2010 8:27 PM (GMT 0)
Well it sounds like you're doing what you should be doing as far as meals go! I find myself eating until I'm miserable so that I can try to keep weight on :) I also had trouble gaining weight for years so now I'm just trying to maintain it. I am glad to hear that the Remicade is working for your colon and that you're feeling better. I was in a flare for over a year and on Pred for 8 months. It KILLED my joints among all the other side effects. I have sworn to myself that I won't take them again - I'll fight that battle when I get back to it.

It's interesting that you mention the problem about calcium because I have pain in my joints quite a bit and in my arms when I work them out. I will request that they do a scan on my next appt and I wondered if anyone else had that kind of pain too. I associated with the long term steroid use. hmmmm, thanks for sharing that tid-bit! Keep us posted on your weight! Appreciate your response with helpful information! If you should have any questions you want answered related to your diet, I can ask my sister who is a Registered Dietician - email me @ [email protected] :)
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