Recently diagnosed and struggling with modulen

[Dylrimm]

I've managed to stumble across this site which seems to be a heaven blessing but I have recently been diagnosed with crohns after years of saying to doctors I have abdomen pains and diahrea. They told me I was too young for anything serious as I'm only 20 years old and I have complained since at least 6 maybe 7 years old as that's how long ago I can remember but they refused to help it was always the excuse of I'm too young for any medicine or it's just abit of ibs, which would lead everyone to think I was making it up and my parents wernt impressed with me making a giant fuss as they would say it's nothing but I finally had a colonoscopy in November which showed severe inflammation and that I had up to approximately 2000 ulcers which was a sign on multiple years of illness and was diagnosed as crohns. As much as the procedure was painful and the gas and air and sedation failed to work which was written on my report the doctor said it was one of the worse he had seen and that the whole team in there felt sorry for me as upsetting as this was I finally had proof that I wasn't just crying wolf about nothing.

I ended up having to change my travelling job I enjoyed to a job in a office as I couldn't handle my flare ups or bowels and I have been constantly flared for the past few months with internal bleeding so they told me I'm not aloud to work at all which sucks!

At the moment they have me on 8 predisolone 6 anti inflamitry tablets 2 calcium tablets and 2 azathioprine which they told me on my last visit hasn't worked but can still take time. They said the only thing they have seen is that my liver enzyme in dangerously high and that they are 50 50 wether to remove me from the tablets. They have told me they are already thinking of injections or infusions but they want to try modulen first which sucks as I want something to eat! I have had this modulen for 8 days on it's own with no food I'm aloud to drink that's it and I still have another 17 days left I just find myself feeling sick from it maybe due to the dairy in it as I can't tolerate it even when I'm not flared I have never been able to I'm only getting about 750ml throughout the day as it makes me feel sick or bloated which obviously hurts.

I just want to know does anyone else feel angry all the time on it and have they had the problem of acne break out ? As I have loads at the moment and I just feel awful physically and mentally and I still have to go toilet a few times a day with no solidarity at all.

Has anyone got any advice or tips they could help me with and maybe advice on infusions or injections?

Thank you if you read this, I'm getting very desperate for support i feel helpless.

 

[emmaaaargh]

Hi Dylrimm! Welcome to the forum, although I'm sorry you have to be here - but it's much better to have a diagnosis than to be suffering the unknown!!

Modulen was awful in my experience, I couldn't stomach it at all and I've never been able to cope with too much dairy. The only elemental drink I could tolerate for long enough was Elemental 028, which comes in little juice boxes. It was better than Modulen, but still got really tiring for the 6 weeks I had to survive on it. If you're struggling with the Modulen, call your IBD team and ask if there's something else you can try! There are loads of types of formula, and not everyone gets on with each type, but doctors always default to Modulen (it's probably cheapest).

About the anger and the acne - that's probably the prednisolone, both of those are recognised side effects of it. The good news is that it will probably go away once you're off of it. Once you're on a maintenance medication that works and come off the prednisolone, they should fade.

The infusions or injections they're talking about are the biologic medications, which are pretty common these days. I'm currently taking one Humira injection per fortnight - but it's not really working, so I might have to switch to an infused med. Don't stress about the biologics, though - although not every med works for every person, you'll find something that does work, and it'll give you your life back!

I think the best advice/tip I could give you right now is to be kind to yourself: you're going through a lot right now (even without the influence of prednisolone which wreaks mental havoc on lots of people!) and although it's frustrating to feel like you're not making any progress recovering, you'll get there. I hope that made sense and if you have any specific questions, please don't hesitate to ask!!

 

[Dylrimm]

Hi Dylrimm! Welcome to the forum, although I'm sorry you have to be here - but it's much better to have a diagnosis than to be suffering the unknown!!

Modulen was awful in my experience, I couldn't stomach it at all and I've never been able to cope with too much dairy. The only elemental drink I could tolerate for long enough was Elemental 028, which comes in little juice boxes. It was better than Modulen, but still got really tiring for the 6 weeks I had to survive on it. If you're struggling with the Modulen, call your IBD team and ask if there's something else you can try! There are loads of types of formula, and not everyone gets on with each type, but doctors always default to Modulen (it's probably cheapest).

About the anger and the acne - that's probably the prednisolone, both of those are recognised side effects of it. The good news is that it will probably go away once you're off of it. Once you're on a maintenance medication that works and come off the prednisolone, they should fade.

The infusions or injections they're talking about are the biologic medications, which are pretty common these days. I'm currently taking one Humira injection per fortnight - but it's not really working, so I might have to switch to an infused med. Don't stress about the biologics, though - although not every med works for every person, you'll find something that does work, and it'll give you your life back!

I think the best advice/tip I could give you right now is to be kind to yourself: you're going through a lot right now (even without the influence of prednisolone which wreaks mental havoc on lots of people!) and although it's frustrating to feel like you're not making any progress recovering, you'll get there. I hope that made sense and if you have any specific questions, please don't hesitate to ask!!

Thank you so much for your reply! And the drink just doesn't seem to settle at all I want food but everything smells awful and makes me want to be sick but then modulen makes me want to be sick and living in a busy household isn't helping when everyone is eating constantly I just feel left out I feel I have a upset stomach with out going the toilet alot as there nothing to pass but when I do it's water and mucus like before they gave me and I'm just.stuck in a mindset of what's the point of having modulen when I'm losing more weight and feeling sick and getting no improvement.