My boyfriend has had crohns since he was 17. Hes 23 now and we've been dating for over 4 years. A couple years ago he got very sick and ended up in the hospital for over 3 month with pneumonia to where doctors had given him 24 hours to live. He thankfully pulled through and has gotten healthy again but recently he told me "something's not right." Well this scared me half to death and I don't know what to do. He's convinced he needs to gain weight and that will make him healthier but no matter how much he eats he doesn't gain a pound. I fear he's malnourished as he only weighs about 110lb at 5'9". Hes currently on Asacol and other multivitamins. He was on Humira or Remicade for a while before being hospitalized but somehow contracted TB while he was there or at some point so he cant do that again right? We arent completely sure about the TB and remicade except that it can cause an active infection i believe. He recently just got insurance again so he wants to find a new doctor because the one he has now just tells him he's doing fine but obviously not if he doesn't feel "fine". I'm just veryyyy worried about him and don't know how to help. I'd love to hear anyone's opinions or stories on how they got healthy or if anyone knows any amazing Crohn's doctors and nutritionist in San Antonio, tx or Sacramento, ca! Thanks in advance!!
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How to gain weight with crohns?? Doctors? Meds? HELP!!
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SarahBear
Moderator
- Location
- Charleston,
Welcome to the forum, Questions!
I'm sorry to hear what you two are dealing with.
I don't think having TB previously means he can't take Humira or Remicade again, you just can't take them if you currently have it. Was he treated appropriately? Doctors may be hesitant to prescribe them since he previously had TB, but it sounds like it may be a situation where the benefits may outweigh the risks.
If he still having Crohn's symptoms? It doesn't sound as if he's in remission - so that is likely why he's unable to gain weight. Asacol is a very gentle medication, and actually not very effective in treating Crohn's. It sounds as if he needs to try something else. Has he been on 6-MP / Imuran / Azathioprine or methotrexate?
If he's uncomfortable with his current doctor, he definitely should find a new one. It's important to have a good, trusting relationship with your doctor when dealing with a serious condition such as Crohn's. I don't know of any doctors in those areas, but you can check the doctor directory, which you can find here.
I hope things go well for you both!
I'm sorry to hear what you two are dealing with.
I don't think having TB previously means he can't take Humira or Remicade again, you just can't take them if you currently have it. Was he treated appropriately? Doctors may be hesitant to prescribe them since he previously had TB, but it sounds like it may be a situation where the benefits may outweigh the risks.
If he still having Crohn's symptoms? It doesn't sound as if he's in remission - so that is likely why he's unable to gain weight. Asacol is a very gentle medication, and actually not very effective in treating Crohn's. It sounds as if he needs to try something else. Has he been on 6-MP / Imuran / Azathioprine or methotrexate?
If he's uncomfortable with his current doctor, he definitely should find a new one. It's important to have a good, trusting relationship with your doctor when dealing with a serious condition such as Crohn's. I don't know of any doctors in those areas, but you can check the doctor directory, which you can find here.
I hope things go well for you both!
Thanks so much for replying!
He did go through the appropriate round of treatment for the TB. We just weren't sure if he could try that treatment again. I'm told by so many that remicade or humira was like a miracle drug for them and I really just want that for him as well!
I did ask him about other meds and he's tried imuran but after his hospitalization he's just been on the asacol. He has the normal symptoms of crohns but they aren't too bad. He usually doesn't get stomach cramps but he has no appetite either.
He is trying to get insurance now but it's kinda hard to get accepted with the crohns. It's just ridiculous but we'll figure it out. I feel like the questions and worries just never end. :/
Thanks again for your post! I really appreciate you replying! My prayers go out to you!
He did go through the appropriate round of treatment for the TB. We just weren't sure if he could try that treatment again. I'm told by so many that remicade or humira was like a miracle drug for them and I really just want that for him as well!
I did ask him about other meds and he's tried imuran but after his hospitalization he's just been on the asacol. He has the normal symptoms of crohns but they aren't too bad. He usually doesn't get stomach cramps but he has no appetite either.
He is trying to get insurance now but it's kinda hard to get accepted with the crohns. It's just ridiculous but we'll figure it out. I feel like the questions and worries just never end. :/
Thanks again for your post! I really appreciate you replying! My prayers go out to you!
SarahBear
Moderator
- Location
- Charleston,
Has he discussed with his doctor going back on Remicade or Humira?
Personally, in his situation, I would find a new doctor ASAP and discuss treatment options. The Asacol just doesn't sound like it's cutting it.
Where do you live, if you don't mind sharing? Are you in the US?
:hug:
Personally, in his situation, I would find a new doctor ASAP and discuss treatment options. The Asacol just doesn't sound like it's cutting it.
Where do you live, if you don't mind sharing? Are you in the US?
:hug:
Hi Questions!
I don't know whether this would help or not, but when I was first diagnosed I was extremely underweight and was put on Scandishake by my Dr, which is a 'powdered high calorie, high energy drink supplement for individuals for suffer from involuntary weight loss or medical patients who experience weight loss due to a medical condition.'
Are you in the US? I'm not sure whether they have the product available there but you can probably get something similar, maybe get your boyfriend to ask his Dr? But I agree with SarahBear, definitely try to help hime find a new Dr if he is not happy with his current one.
I hope things work out,
Sarah x
I don't know whether this would help or not, but when I was first diagnosed I was extremely underweight and was put on Scandishake by my Dr, which is a 'powdered high calorie, high energy drink supplement for individuals for suffer from involuntary weight loss or medical patients who experience weight loss due to a medical condition.'
Are you in the US? I'm not sure whether they have the product available there but you can probably get something similar, maybe get your boyfriend to ask his Dr? But I agree with SarahBear, definitely try to help hime find a new Dr if he is not happy with his current one.
I hope things work out,
Sarah x
Sounds like the Asacol is not doing the job.
Like Scrappy said maybe some entrenal nutrition along the lines of Ensure, they have a powdered one that does not contain carrageen which can be bad for Crohn's.
My husband was on Asacol and then Pentasa for many years and still had many symptoms and fistulas and abscesses once he was switched to Imuran about 8 years ago he has done really well gained weight (maybe even a little more than he should have, but I'm not complaining) He is 6'1" and was 155 pounds and now weighs about 210.
My son was on supplemental nutrition earlier this year and gained 23 pounds in about 8 weeks he went from 5' and 77lbs to 5'1.5" and 100 lbs. He is 13. He still drinks 2 of the drinks a day in order to maintain weight and get the needed calories and nutrition. It was the only thing that helped him to gain. He had gone 3 years with only gaining about 5-8lbs and his blood work/labs came back normal.
A good doctor that you have a good relationship with is very important
Like Scrappy said maybe some entrenal nutrition along the lines of Ensure, they have a powdered one that does not contain carrageen which can be bad for Crohn's.
My husband was on Asacol and then Pentasa for many years and still had many symptoms and fistulas and abscesses once he was switched to Imuran about 8 years ago he has done really well gained weight (maybe even a little more than he should have, but I'm not complaining) He is 6'1" and was 155 pounds and now weighs about 210.
My son was on supplemental nutrition earlier this year and gained 23 pounds in about 8 weeks he went from 5' and 77lbs to 5'1.5" and 100 lbs. He is 13. He still drinks 2 of the drinks a day in order to maintain weight and get the needed calories and nutrition. It was the only thing that helped him to gain. He had gone 3 years with only gaining about 5-8lbs and his blood work/labs came back normal.
A good doctor that you have a good relationship with is very important
Thanks for all the support! We live in Texas and are DEFINITLY looking into finding a new doctor so if anyone knows of anyone amazing, we'd love your input!
Scrappy, I haven't heard of Scandishake but that had now been added to our list of things to ask the new doctor about!
He took Ensure when he got out of the hospital but it didnt help him gain any weight. It actually made him throw up a couple times but we think it may have just been all the other meds he was on after his hospitalization possibly causing it so he wants to give it another try. I think Boost is kinda similar but is there any real difference in them? What supplemental nutrition were your husband and son taking Jmrogers4? Was it just the ensure? Thats amazing how they gained so mich weight! I love how you think your husbands gained more weight than he should have. Honestly I wouldn't be complaining either! =P
Scrappy, I haven't heard of Scandishake but that had now been added to our list of things to ask the new doctor about!
He took Ensure when he got out of the hospital but it didnt help him gain any weight. It actually made him throw up a couple times but we think it may have just been all the other meds he was on after his hospitalization possibly causing it so he wants to give it another try. I think Boost is kinda similar but is there any real difference in them? What supplemental nutrition were your husband and son taking Jmrogers4? Was it just the ensure? Thats amazing how they gained so mich weight! I love how you think your husbands gained more weight than he should have. Honestly I wouldn't be complaining either! =P
My son is on Peptide it is for youth but it is an elemental formula, the proteins are broken down further to allow for easier absorbtion. My son had problems with Ensure it caused tummyaches and he always said made him feel like he was going to throw up. There are adult versions of the drink, here is a web link to one Pepatem.
http://www.nestlehealthscience.us/products/Pages/PEPTAMEN®.aspx.
As far as the difference between Boost and Ensure I'm not sure but my son could certainly tolerate the Boost better then the Ensure, no stomachaches, nausea
My husband did not do any drinks, once he was on the Imuran and his symptoms subsided he gained weight so I think for him it was getting the disease into remission.
http://www.nestlehealthscience.us/products/Pages/PEPTAMEN®.aspx.
As far as the difference between Boost and Ensure I'm not sure but my son could certainly tolerate the Boost better then the Ensure, no stomachaches, nausea
My husband did not do any drinks, once he was on the Imuran and his symptoms subsided he gained weight so I think for him it was getting the disease into remission.
- Location
- Madison, WI, USA
If he can tolerate dairy, milkshakes help with a quick weight gain. Has he ever taken Prednisone for Crohns? There are lots of downsides for many people but one of the upsides is it makes you really hungry and leads to weight gain.
Awesome! Thanks for the link Jmrogers4! I think it's something worth giving a try!
Kiltubrid, he can only tolerate dairy in very veryyy small amounts so hes constantly trying different types of milks including the lactose free ones to see which work best do him. He's currently juicing a lot to try and absorb more nutrients that way and has also been making milkshakes here and there if he's having a good day. He was on Prednisone before and after the hospital and although he gained a lot of weight, he lost it all as soon as he stopped taking it. He mostly just looked swollen with the "moon face" and the othe side effects are too much to deal with. That's why we are looking for better ways for him to gain a healthy amount of weight. I'm praying that some medicine will work for him and he will go into remission soon. I feel like that's his best bet to any weight gain since he already eats A LOT; he just can't absorb enough to actually see any weight change you know?
Kiltubrid, he can only tolerate dairy in very veryyy small amounts so hes constantly trying different types of milks including the lactose free ones to see which work best do him. He's currently juicing a lot to try and absorb more nutrients that way and has also been making milkshakes here and there if he's having a good day. He was on Prednisone before and after the hospital and although he gained a lot of weight, he lost it all as soon as he stopped taking it. He mostly just looked swollen with the "moon face" and the othe side effects are too much to deal with. That's why we are looking for better ways for him to gain a healthy amount of weight. I'm praying that some medicine will work for him and he will go into remission soon. I feel like that's his best bet to any weight gain since he already eats A LOT; he just can't absorb enough to actually see any weight change you know?
As others stated find a doctor and get symptoms under as much control as possible is a key factor. He should ask for blood work to make sure he isn't missing key nutrients.
Weight gain, well I was once 248lbs. I hit my low April 2012 which was 151lbs. Sitting here today I am 180 and it's been a battle all the way. I typically weighed about 225lbs. First step is figure out what he can eat via a food journal it's very important in crohn's to know your safe foods. After that it's eating your safe foods, do weight bearing exercise and prepare for a long process. I have pretty much gained less then 1lb a week over the last year, but once you add it up it's 30lbs.
There are protein and weightgainer shakes available that are lactose free (muscle milk). I am sure there are other brands as well that's just one that I have used. Try adding oils to food if he can tolerate them. Olive oil is 270 calories per once, can be dumped on noodles, rice just about anything. Peanut butter can be handy too since it packs a lot of calories in a tablespoon.
Once his symptoms are controlled absorption should improve at least mine did.
Weight gain, well I was once 248lbs. I hit my low April 2012 which was 151lbs. Sitting here today I am 180 and it's been a battle all the way. I typically weighed about 225lbs. First step is figure out what he can eat via a food journal it's very important in crohn's to know your safe foods. After that it's eating your safe foods, do weight bearing exercise and prepare for a long process. I have pretty much gained less then 1lb a week over the last year, but once you add it up it's 30lbs.
There are protein and weightgainer shakes available that are lactose free (muscle milk). I am sure there are other brands as well that's just one that I have used. Try adding oils to food if he can tolerate them. Olive oil is 270 calories per once, can be dumped on noodles, rice just about anything. Peanut butter can be handy too since it packs a lot of calories in a tablespoon.
Once his symptoms are controlled absorption should improve at least mine did.
110 is pretty underweight. It is imperative that his symptoms get better. Especially if he is having a lot of diarrhea everyday (20 or more times) it's just flat out impossible to make substantial gains in my experience.
On the bright side, once you reign the disease in, weight gain can pretty much happen as fast as you want it to. Prednisone helps a lot with increasing appetite. Others have listed lots of good ideas like homemade shakes, putting olive oil on everything etc.
Where do you live in TX? I know some doctors in Houston that you could look in to.
On the bright side, once you reign the disease in, weight gain can pretty much happen as fast as you want it to. Prednisone helps a lot with increasing appetite. Others have listed lots of good ideas like homemade shakes, putting olive oil on everything etc.
Where do you live in TX? I know some doctors in Houston that you could look in to.
Thanks for the advice armycrohns! He has started to eat PBJs every day now! As for the food log, he done that and has a pretty good idea of what foods he can and can't eat!
Kel, his symptoms aren't terrible. He goes about 4-5 times a day and only has diarrhea once in a while and that's usually when he eats something he knows he shouldn't! We're pretty much praying that once he's in remission, he'll be able to put the weight on since he does eat a lot. We just don't know where all his food goes! :/ we live in San Antonio but he goes to school in Sacramento so we were hoping to find a doctor in either of those cities.
Kel, his symptoms aren't terrible. He goes about 4-5 times a day and only has diarrhea once in a while and that's usually when he eats something he knows he shouldn't! We're pretty much praying that once he's in remission, he'll be able to put the weight on since he does eat a lot. We just don't know where all his food goes! :/ we live in San Antonio but he goes to school in Sacramento so we were hoping to find a doctor in either of those cities.