I admire him for his mental strength but I guess not everyone has that...
I thought that but I have to mix my mofulen with 210ml of water and I drink 7 of them a day :/Hi
I am the same and always suffered from low blood pressure and headrushes. During one of my stays in hospital when they were monitoring my blood pressure my levels became normal when I was hydrated. The nurse told me that dehydration caused your blood pressure to drop. Could you be dehydrated?
Hi Liz,Hi Kimbo Hope you are feeling better. I would check in with your dietician or specialist nurses if you are worried. I found for the first few days the Modulen did go through me a bit, but it settled down about day 9 or 10. But even then I did feel okay and didn't have any blood pressure problems. The Modulen itself doesn't really come with any side effects it is just pre-digested food really. But it can pull water into the gut and make it go through you, a bit liquid in, liquid out and you need to stay hydrated. I would just check carefully that you are making it up right - which should be 210mls and 6 scoops or as I do 420 mls and 12 scoops. Did they give you one of the specials shakers to make it in with the measurements on the side? Anyway, hope you are getting there. I would so want it to work for you as it has been so good for me. Fingers crossed. Liz
Hi Liz,I really think you need to get the medics involved. You shouldn't struggle on your own. Do you not have a Specialist IBD Nurse at your hospital you can contact? If not, give your GP a ring. If you have a thermometer, check your temperature and make sure you are not running a fever. It might be that you have picked up a bug or something, and I do think it may be time to get help. There is nothing wrong with getting your Doctors or Hospital involved and I am sure they would want you to. Hope things improve - I am a bit worried about you. I really do sympathise, I know it's hard sometimes to know what to do for the best, but really - get help. xx
Hiya thank you all for the support its so comforting right now!I am so pleased you got help. Really hope everything works out. It might not even be your Crohn's, could be you've picked up a virus or something. Either way I wish you lots of luck and will be thinking about you. Let us know how you get on once you are able to. Lots of love. xx
Turns out now they dont think its an appendicitis they now think it is my crohns something to do with my small bowel :/Hi, thanks for the update. I'm not surprised, it didn't seem to me as though it was your Crohn's. We have to be careful as there is a tendency to think everything is Crohn's related and of course, it's not. I am so relieved that you are in hospital. Whatever it now is, you are in the right place and you will get through it - we all do. I hope you have lots of friends and family around you. Wishing you all the best. Liz x
Ive been on modulen for 1 week and now having problems with my small bowel... could be a coincidence i dont know...Reading about EEN confuses / worries me with my understanding of the microbiome's role in Crohn's.
Aren't they typically loaded with glucose / simple sugars? These are known to feed / promote growth of invasive bacterias related to Crohn's, and if all the nutrition is absorbed in the small bowel you're starving the critical bacteria in the large intestines.
Has anyone actually achieved remission on EN then maintained it transitioning to a normal whole foods diet? My fear would be that you starve the bacteria in the gut responsible for production of SCFAs and lose the barrier that protects against food allergies / intolerance, making going back to whole foods difficult because you'd need to rebuild you gut bacteria all over. This can take years.
If you're having pain ask about the pancreas. The pancreas is involved in sugar metabolism.Ive been on modulen for 1 week and now having problems with my small bowel... could be a coincidence i dont know...
Thanks for the advice MLP I will try that! ika:If your allowed lollipops you can crush them and put them in a cotton candy maker
And make cotton candy with them or pure sugar for that matter
You can also make pure sugar "cookies"
Sugar( even crushed lollipops ) plus water boil and crystallize to pour in silicon molds
Forms cool shapes
Hi LaurenHi all - my name is Lauren and I'm a new user to this forum!
I've just come out of a five year remission (I'm now 21), and after a series of unsuccessful steroid treatment, I'm now on Azathioprine and Modulen (to stop the pain in the meantime).
However, because I find it so difficult to stick to the diet, I have opted for a 70/80% Modulen diet, 20/30% lowfibre meals. Is anyone doing this as well? Would anyone recommend any safe foods? Does small amounts of food reduce the effectiveness?
Hi Jackie - thanks for your reply! Yes...I thought as much.Hi Lauren
I hate to be a party pooper but as far as I understand, modulen works best with no food, nothing at all other than water and black, decaff tea. That's it. That's certainly how I've used it in the past. Rather than just being a supplement to food it's meant to be the only stuff going into your bowels. Even low fibre meals may have complex fats, protiens and starches which will make your gut work harder to digest.
That said, if you 100% can't stick to no food, it's better to try mixing than not to try. But giving even two days of no food a go will likely surprise you how strong your will power can be.