Weight loss. :(

[Cbar1516]

My continuing weight loss is becoming hugely depressing. I've always been a slender guy, but prior to Crohn's, I got really into working out and supplementing and put on a lot of really healthy weight. At 5'10 and 160 lbs I was looking really good for the first time in my life. Now I can't maintain weight to save my life (maybe literally).

I'm eating a tonne (no gluten or sugar), my stools are solid, healthy-looking, and only happen once a day, I'm going to the gym and exercising daily, but it's like I wake up each morning down another pound. I loook skeletal and gaunt, pale, and feel incredivly weak. My muscles ache for days after exercising, and seem to be wasting away. I've been on Entocort for over a week, which all the doctors say will cause me to gain weight, but so far I'm just continuing to lose weight overnight. All I've noticed is that it's made my body hair longer and gave me acne. Every time I pee the surface of the toilet bowl becomes visibly frothy from all of the protein and nutrients that I can tell are just going right through me. I'm at a total loss as to what to do, and between the physical pain and emotional turmoil of watching myself waste away I'm becoming deeply depressed.

I eat multiple eggs for breakfast, steak for lunch, veggies and more meat for dinner, snack on almonds constantly, drink a large carton of cashew milk each day, supplement with every vitamin known to man, and have several protein shakes throughout the day. The pounds pounds just keep falling off. Looking like an advanced stage AIDS patient is really beginning to take it's toll on me.

Anyone else in a similar boat ?

 

[Asher]

I'm in the opposite boat. I keep gaining because I'm on a low-fiber diet so I'm
Basically only eating Chicken, Noodles, potatoes, and eggs. So I'd suggest loading up
On carbs and see if that does the trick because it certainly did with me! Haha

 

[Cbar1516]

I was on a high-carb diet prior to my diagnosis, and still losing weight pretty rapidly. Furthermore, my only symptoms seem to be fatigue, muscle aches, bone and joint pain, which carbs seem to exacerbate. Anytime I consume food that converts to sugar in my body (bread, pasta, fruits) I begin ferociously belching. It's got to the pint where I can basically determine how my body responds to foods solely by how much I belch after consuming them.

 

[Poppysocks]

I know exactly how you feel. Literally, to a tee. I've been skinny and underweight since I was 8 years old when I was diagnosed with Crohns. I wish so bad to be able to put on weight. To just look really healthy for ONCE. It's happened before, I've been there, but then I lose it. It's like a tease. I'm still like that to this day. I eat like a horse yet I can't gain weight. I want to so bad but I just can't put on weight. Once my remicade starts to wear off, I start to feel more fatigued and tired. I'm 5'11 138 lbs. And that's probably being generous.

Maybe you should try different medications? Continue to tinker with your diet until you can find something that really works.

I think something that's helped my thought process, something that has been able to calm me down, is to think, that I can ONLY DO WHAT IS IN MY CONTROL. There's certain things in life, that you just cannot control, no matter what you do. And you just have to accept it at the time being, that this is how it is at the moment. You have to walk around with your head held high and proud of who you are, no matter what. This is what has been placed in front of you. You didn't want this, but it's here and you have to make the best out of it. You can either sit around and cry about it, or just accept it and be proud of what you are. I'll take the latter.

 

[my little penguin]

Have your tried supplemental nutrition ?
EEN (formuls only no food ) is used in kids instead of
Pred
However later most kids need extra calories to maintain weight and gain/grow
DS has been drinking peptamen jr
Easier on the gut and less healthy bowel is needs to absorb the nutrients
There are other store brands as well as ones you can make on your own .

Good luck

 

[shamrock15]

My crohn's hit me at about 17 years of age, going from a very fit 175 lbs to 140 in about a month. For the next decade and a half, I couldn't break 150 regardless of diet or exercise regime. With remicade and aza, I am back to about 170 now, playing hockey regularly and exercising. Weight loss that you are experiencing is a sign of malabsorption. At some point this should stabilize for you. Make sure your doctor is monitoring it though.

 

[Carrie]

This is concerning to me. Last time I flared, I lost 40 percent of my body weight in about five months, and half that was in the last month prior to hospitalization. I ended up being in hospital for three months and on TPN for 1.5 months before surgery. As you said, it's depressing watching yourself waste away, and could potentially be life-threatening if it's not brought under control.

Have you talked to a dietitian? What about adding Ensure/Fortisip/Boost-type drinks? It almost sounds like your bowels are going through the motions, but they're not actually accessing the nutrition, and something like a nutritional drink may help. Make sure you heckle your GI for help and answers. Wasting away is not normal!

 

[cwhitaker]

U could try carnations breakfast carnations he has gained 40 to 50 pounds in the last cpl years. Before he was under 90 pounds and we were lucky if he was 80 lbs. Now he was almost 136 lbs

 

[UnXmas]

Yes. I'm female so everyone assumes anorexia. When I was in hospital at my lowest weight, they said my BMI was not known to be "compatible with life". It seems pointless even including my height/weight stats; the amount I'd need to gain to be a normal weight seems impossibly huge.

I've wondered if there's something wrong with my metabolism. They were recording everything I ate and drank in hospital and I needed far more calories than I should, and the amount of malabsorption didn't seem to account for it.

My stomach wouldn't tolerate NG and I got sepsis from TPN.

They told me I'd gain on steroids but I don't.

I would suggest adding sugar into your diet if you want to gain weight, it can only help. Keep exercising only in ways that are not strenuous. What symptoms do you get from gluten?

It may be a good starting point to determine whether your problem is due to malabsorption or to inadequate calorie intake (or both). Work out your calorie intake on typical days to check you've not overestimated it, and if you've not had a thorough assessment for malabsorption recently, ask your doctors if you may need one.

 

[UnXmas]

Also:

my stools are solid, healthy-looking, and only happen once a day,

Every time I pee the surface of the toilet bowl becomes visibly frothy from all of the protein and nutrients that I can tell are just going right through me.

If you were having absorption problems due to Crohn's, I think you'd see the evidence in your bowel movements, not your pee. "Frothy" urine, can be a symptom of some other medical conditions; I'm guessing you may have heard of proteinuria as you mention protein loss. Have you had this investigated by a doctor? As far as I know, frothy urine is not a Crohn's symptom, unless some complication has developed perhaps, but this would be unrelated to your weight loss.

Have you discussed any of this with a doctor? It sounds like you need to figure out what is going on. Identifying the cause of your weight loss will make it easier to know what to do about it. Basic blood tests can often indicate malabsorption, so that may be one of the first things a doctor will do.

If you were having severe absorption problems, you'd have diarrhoea or steatorrhoea (bowel movements containing fat). If this isn't the case, and you're having normal bowel movements as you say, it might something other than malabsorption is going on. Do you vomit? That's another thing that could, obviously, affect the nutrition you're getting.

 

[JeffBee]

This thread is 2 months old, but I would like to know if anyone has been able to gain weight and how they are doing it. I have had Crohn's for 40 years with 2 surgerys (the first removed many feet of small intestine, about 28 years ago). The second done about 4 years ago and took very little with multiple stricturplasties). I am 5'/9" and down to 128lbs. I only take thyroid meds and haven't taken any Crohn's meds for years. I take vitamins and Tumeric capsules daily. First half of bowel movement is solid, second half is loose. I exercise daily but many times wake up light-headed. This week decided to go gluten-free because of the damage gluten can do to small intestine. I have survived quite nicely without Crohn's meds and don't really know if they can reverse weight loss? Looking for tips on how to absorb nutrition in my very short intestine. Thanks! --Jeff

 

[UnXmas]

We have a weight gain support group, JeffBee, though I don't think any of us are that successful so far.

http://www.crohnsforum.com/showthread.php?t=71109

Have you been diagnosed with coeliac? Are you seeing a gastroenterologist?

 

[JeffBee]

I see a gastroenterologist but he is strictly meds oriented. That's fine for some people but not for me. I prefer lifestyle, diet, complementary/alternative therapies and have been reasonably successful. The only meds I have taken in my 40 year relationship with Crohns is Prednisone very briefly and Asulfadine. No coeliac, at least I don't get pain from eating wheat, but gluten still can be nasty stuff and I think it interferes with absorbption in any IBD problems. Unfortunately any dietary restrictions seem to contribute to weight loss. I actually have 2 gastroenterologists because we split our residence. I will see the second one next month. Thanks for responding!

 

[LodgeLady]

I have been dealing with this for 3 years now. I changed my diet once I was diagnosed with Crohns which is low fiber, lactose free, basically low FODMAP. However, the diet has helped but not enough to take away my symptoms. I am down 20 lbs ( not trying to lose) 140 down to 120 lbs. I finally showed my doctor a pic of a before and after and he said I look great ! I haven't weighed that since high school 39 years ago!) I eat but I don't gain. Had my gallbladder out so high fat foods don't always agree with me. I gotta watch the supplements because a lot have a milk base. My BMI is normal but I have no room to drop. I don't gain weight on steroids. I am so frustrated and I dont think my doctor thinks it's a problem.