Hi if anyone has experienced something similar I'd be so greatful for some advice , I was diagnosed with severe crohns in large and small bowel after 5 months of pain & weightloss, ive been given imaxiflab infusions, im on prednisone, thiamine, azithorprine? And b12 as well as being placed on a modulen only diet for 3-6 weeks. I am day 7 on the modulen and new meds & im extremely shaky and my arms & legs are very weak, I am drinking the 2litres of modulen and craving more I feel that hungry and weak. Has anyone gone through anything similar?
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Modulen only diet for 1 week, is shaking and weakness normal or side effect of all the new meds?
- Thread starter gem1282
- Start date
SarahBear
Moderator
- Location
- Charleston,
Hi, Gem1282. Unfortunately I don't have any advice on the Modulen diet. It's very likely that it is the medications combined with the diet, though. You started the diet and all of the medications on the same day? When did the shaking and weakness begin?
Hopefully someone with more experience in this area will come along soon. :hug:
Hopefully someone with more experience in this area will come along soon. :hug:
nogutsnoglory
Moderator
I don't have experience with Modulen but I'm bumping the thread in the hopes you get the answers you need.
- Location
- USA
Hello gem1282, I've been through similar treatment. I've had imaxiflab when I was younger and now I'm on Humira. I've also been on prednisone, azathioprine, I was on a liquid diet for about two months last year also.
The liquid diet involved me taking just water and a drink called Ensure. It sounds similar to Modulen, a sole source of nutrition, lactose/gluten/fibre free. I never felt full on a liquid diet no matter how much I drank. I was trying to have more than 6 drinks a day but its not the nicest of drinks, I found it quite difficult for the first two weeks or so.
I can't recall being shaky but I did feel very weak.
It doesn't help that each of the medications can come with horrible side effects. I was on prednisone a couple of times for about 4 -6 weeks and with the dose decreasing after the first two weeks. Aza initally gave me headaches as it was too high a dose for my weight.
How long have you been on these meds? Predinsone & Aza ? Are the Infliximab infusions improving your symptoms?
Best Wishes!
The liquid diet involved me taking just water and a drink called Ensure. It sounds similar to Modulen, a sole source of nutrition, lactose/gluten/fibre free. I never felt full on a liquid diet no matter how much I drank. I was trying to have more than 6 drinks a day but its not the nicest of drinks, I found it quite difficult for the first two weeks or so.
I can't recall being shaky but I did feel very weak.
It doesn't help that each of the medications can come with horrible side effects. I was on prednisone a couple of times for about 4 -6 weeks and with the dose decreasing after the first two weeks. Aza initally gave me headaches as it was too high a dose for my weight.
How long have you been on these meds? Predinsone & Aza ? Are the Infliximab infusions improving your symptoms?
Best Wishes!
I am currently on modulen and Azathioprine, and I can't say I've had the side effects you are experiencing. However, I do remember feeling a bit sickly when I was put on Aza early last year. It wasn't paired with the modulen diet though. How are you coping with the shakes? The liquid ones (to clarify)
Thanks to you all for your replies and bumps, im 3 weeks in to the meds and liquid only diet now, the weakness in my arms and legs has gone so im putting that down to being in hospital for so long I wasnt very active so coming home & going up & down stairs was a struggle! Im still shaking though but its a small price to pay to be pain free im sure you'll agree.I do have to have a bowel resection In a few weeks though they cant save my large bowel but they are trying to save my small bowel!
JustAYoungLad how did you get on with not eating any solid food when you were on the ensures? Some days I find it so so hard and ive been so close to cheating I dont know if i'll manage the 6 weeks , ive put on 3lb with it though! I had my 2nd
infusion on Tuesday of infiximab and im still feeling great so its def agreeing with me!
Zilla7777 how are you getting on with the modulen do you find it easy?!
Many thanks again for all your replies, im only 6 weeks diagnosed and its all still very new and scary so its nice to have support from people who know how i feel!
JustAYoungLad how did you get on with not eating any solid food when you were on the ensures? Some days I find it so so hard and ive been so close to cheating I dont know if i'll manage the 6 weeks , ive put on 3lb with it though! I had my 2nd
infusion on Tuesday of infiximab and im still feeling great so its def agreeing with me!
Zilla7777 how are you getting on with the modulen do you find it easy?!
Many thanks again for all your replies, im only 6 weeks diagnosed and its all still very new and scary so its nice to have support from people who know how i feel!
It's good to hear back! The weakness from not being able to eat properly is a real killer, so It's not too surprising that it is that. It's good to hear you're feeling stronger though.
Apparently I can start introducing foods this saturday coming
The 7 weeks seemed to go quite fast, and mixing the flavours up certainly helped. I was also allowed to have basic lollies like barley sugars and jelly beans so I can definitely say I've had my share of them (Maybe my share, and the rest of the population's... oops.) Ahah. I have gained 13 pounds from it though, so maybe that's where the lollies are going.
Another hint I learned from this forum is to shake up the entire days shakes the night before. once it kind of 'sets' it tastes a whole world better. It's almost intolerable otherwise for me.
Apparently I can start introducing foods this saturday coming
The 7 weeks seemed to go quite fast, and mixing the flavours up certainly helped. I was also allowed to have basic lollies like barley sugars and jelly beans so I can definitely say I've had my share of them (Maybe my share, and the rest of the population's... oops.) Ahah. I have gained 13 pounds from it though, so maybe that's where the lollies are going. Another hint I learned from this forum is to shake up the entire days shakes the night before. once it kind of 'sets' it tastes a whole world better. It's almost intolerable otherwise for me.
Great news about Saturday, what's the first food your going to have? I've had a few lollies too and foxes boiled sweets but the past 2 nights they've given me major indigestion so I'm going to have to lay off those a bit :-/
I hated modulen at 1st but I love them now and I actually had to ask my dietician if I could have more and she agreed so I'm having 2300cals worth a day, I do put crusha in there on her say so too and feel like I'm just drinking milkshake now, have you put on the 13pounds in the last 7weeks of being on modulen? If so that's great because I wasn't sure at 1st and they've told me they can't operate until I put weight on so it's nice to know (even with the help of lollies) that it could work!
I totally agree with you about the shakes i learned early on about making them up, at 1st I was keeping a 2ltre bottle of water cold in the fridge & making them with that but as soon as all the powder goes in it was basically warm again so I started making them up before hand and they taste so much nicer!
I hated modulen at 1st but I love them now and I actually had to ask my dietician if I could have more and she agreed so I'm having 2300cals worth a day, I do put crusha in there on her say so too and feel like I'm just drinking milkshake now, have you put on the 13pounds in the last 7weeks of being on modulen? If so that's great because I wasn't sure at 1st and they've told me they can't operate until I put weight on so it's nice to know (even with the help of lollies) that it could work!
I totally agree with you about the shakes i learned early on about making them up, at 1st I was keeping a 2ltre bottle of water cold in the fridge & making them with that but as soon as all the powder goes in it was basically warm again so I started making them up before hand and they taste so much nicer!
Yep, it's definitely 6-6.5kg I definitely didn't have before! I am having roughly 3000cals a day, but I guess it's appropriate for my age/gender and activity levels. It definitely is good for gaining weight though!
My first foods will be individually adding Potato, Rice or Chicken that has been boiled or grilled. It's essentially the LOFFLEX diet, where you add foods on over 8 or so weeks.
How far are you into the diet? I agree with you on the initial hate with them. But now feel like if I absolutely had to I'd have no issue with doing another 7 weeks It's not too bad. Isn't it funny seeing peoples reaction when they learn of the diet though?
I am having roughly 3000cals a day, but I guess it's appropriate for my age/gender and activity levels. It definitely is good for gaining weight though! My first foods will be individually adding Potato, Rice or Chicken that has been boiled or grilled. It's essentially the LOFFLEX diet, where you add foods on over 8 or so weeks.
How far are you into the diet? I agree with you on the initial hate with them. But now feel like if I absolutely had to I'd have no issue with doing another 7 weeks
It's not too bad. Isn't it funny seeing peoples reaction when they learn of the diet though?Spooky1
Well-known member
- Location
- South Northants
I too starve on the liquid diet, but mines through the peg site with a pump, just 50ml per hour otherwise it comes back up or shoots straight through. i'm surprised they didn't give you the naso gastric tube. I also have boiled sweets and very bland food. But its still not filling. Winters are worst, nothing like a hot meal to warm you through. What a nightmare.
not sure about the shakes. I didn't do well on aza, very nausic and pukey and feeling very unwell. have you checked back with anyone professional over having the shaking?
not sure about the shakes. I didn't do well on aza, very nausic and pukey and feeling very unwell. have you checked back with anyone professional over having the shaking?