Modulen - you have to give it time

[EW8]

Dear all, I have been really ill this past six months resulting in my being threatened with losing the bit of gut I have left (157cm) and being left with TPN and the transplant list. Anyway, 12 days ago on yet another emergency admission to hospital I started on Modulen. To be honest I was too scared to eat so at least it was some nourishment. For days it went through me as green liquid and I had to stay very near the loo! But I had found a post from one of you saying this was her experience until day 10 when everything changed, so I hoped it might for me and just persevered. Today is day 13, the diarrhoea has stopped and this morning I had a normal-ish stool. I have stopped the awful weight loss and am feeling stronger every day.

I think looking at other people's experience what I have been through is fairly average. So if you are going down this road, do hang in there if you can for the first two weeks. I shall stick with the Modulen now for 10 weeks and let my insides rest and heal. It feels very safe, easy and I like the taste. I may have a stricture to deal with in the future, but at least we have options now. I do hope this can be a weapon in your armoury in the Crohn's battle and hope some of you find this useful. Good luck all. Xxxx:yfaint:

 

[EvieBaby]

I was put on modulen a few years ago and while I felt better on the inside it didn't actually do that much. It was such hard work but it was definitely worth a try

 

[Carrie]

I'm glad the Modulen is working for you! When I tried it in 2011, I was too far gone, and absolutely needed surgery. Even drinking liquids made me ill!

I know how tough it is sticking to the liquid diet. I hope this continues to work for you, and you're back in fighting shape soon!

 

[EW8]

Dear Carrie, thanks for your support. It was a bit touch and go for me too. The surprising thing is I don't feel at all hungry and the more I am on it, the more I like the taste. My Specialist Nurse says I am odd in this, but if I have thought anything might do me good, I have always been very able to dig my heels in and go with it. Yesterday I walked the dogs in the park on a sunny day that almost felt like Spring. Two weeks ago I wouldn't have thought it possible to do such a thing. So I have a long way to go, but I am much less stressed and can at least see a glimmer of hope and as you know, sometimes we are grateful just for that.

Good luck to you too. I hope you are well at present. This site is a life line for me, as it for many. It is so good not to feel alone and be able to reach out to people who instantly understand. Much love.

 

[24601]

So glad you have found something that is helping you right now, especially knowing the stage you are at with this disease. I have about 150cm of bowel left total (90cm of small bowel) and never expected to be talking life expectancy with my docs at 36, so I completely understand the anxiety involved with potentially needing more surgery and losing more bowel and the consequences of that.

I'm with you on actually liking the taste of Modulen! I feel like it's just a nice plain slightly sweet milky taste - quite comforting really in itself! I like to make it up at 1.5 times the recommended concentration because it gives it a milkier/creamier mouth feel. And then I have less to drink to get the calories in too. I know any liquid diet takes persistence but the great thing is - as you've experienced - if you start feeling healthier that really does provide a lot of motivation to carry on.

Very pleased to hear that you are able to get out and walk the dogs and have some hope! I think that always makes such a difference.