New to forum.

Hello everyone,

I have recently came across this forum and it seems that this could be a good place to get some help and support. I'll start this by giving you all a little background of my Crohn's disease.

I am a 22 year old male who was diagnosed with Crohn's in October 2009. I started having major problems in August 2008 with really bad abdo pain, vomiting blood, bloody stools with mucous and having to go around 10 times a day. When I first went to my GP I was told that I just had a stomach bug and it would pass. My symptoms seemed to clear for a while but continued to come back periodically and so I was sent to the heamatology department at my local hospital for regular blood tests and got a colonoscopy booked in.

After I had the colonoscopy it was confirmed that I had Crohn's so I was given prednisolone steroids and put onto 4g of messalazine. This seemed to work at first until I came off the steroids and I had another flare. I was kept on the messalazine and given azathioprine which my body didnt tolerate and made me vomit blood within half an hour of taking the tablets and so I was then told to try 6-MP which did the same. Moved onto Methotrexate which made me feel much better for about a year till I had a major flare up which meant I needed a resection in April 2011. After having my terminal illeum removed I thought I would be symptom free for quite a while taking the reducing dose of steroids and 4g of messalazine but I was wrong. A few months after surgery I was back in hospital again with really bad abdo pain and increased loose bowel movements. Again it was steroids and messalazine to try and keep things under control.

I had another flare up 3 months ago and was put onto a different steroid Budesonide along with my 4g of messalazine. This worked at the higher dose of steroid but not when I reduced it even by 1 tablet started getting the pains and diarrhoea back. I was then put back onto the 6-MP as my GI had discovered that we didnt leave enough time between the failed attempt at azathioprine and 6-MP last time and things seemed to be going well for 3 weeks until and abscess started forming at my tail end a week before I was due in for scopes.

Spent 2 weeks in hospital again just there after discovering the abscess and had my scopes which revealed I know have crohn's in both my large and small bowel. I also have a number or ulcers throughout my whole bowel. It was decided that I should continue with my 25mg of 6-MP, 4g Messalazine and 40mg reducing Prednisolone (this is because I was giving IV Hydrocortisone in hospital) and also try using Modulen IBD. So now my diet consists of solely Modulen for 8 weeks to try and help my bowel heal and get me into remission of my Crohn's. I am almost 2 weeks into this diet taking 1500ml of modulen a day to get 2250 calories and can only drink water or weak black tea on top. It seems to be working as I am no longer experiencing any pain and my bowel movements are what would be considered normal. I'm no longer going 10+ times a day only once or twice.

Has anyone else had any experience of a sole 8 week period of Modulen? I havent been able to find out much information about it. Anything I have found has been the experience of younger people or people who use it as a supplement. Seen some stories of people not tolerating it or disliking it but I actually quite enjoy it.

Thanks for reading through this wall of text if you made it this far!

Hello and welcome to the forum

I was on Modulen myself for a while last year leading up to my op and didn't think it was that bad - have you been given flavourings to add to it? I had banana and strawberry and always had it cold from the fridge and towards to end was able to get about 5/6 shakes a day in me.

One thing i was wondering it about the mesalazine, it looks to me that you always end up flaring whilst on it so is it actually strong enough a med for you? It might be something to ask the doc about when you next see them - when is this by the way? Also is the plan to continue upping the dose of 6mp?

AB
xx

I only have the base Modulen at the moment as that's all the hospital could give me on discharge on Friday evening. I have tried the strawberry in the hospital and quite enjoyed that. I still need to give my discharge letter to my GP tomorrow as the surgery is closed for a bank holiday today. Will hopefully be able to get the flavourings from the chemist once my GP has written up a script for me.

I have a follow up OP appointment in 2 weeks with the doctor that was treating me in hospital this time so ill ask about the mesalazine then. Yea the plan is to up the dose to 50mg after a month depending on my weight gain. A major part of my problems is weight loss and I currently only weigh 42kg so the specialist is a bit wary of having me on too high a dose too quickly.

With the modulen i'm having absolutely no problems getting the required volume into me. I'm mixing it at 1.5kcal per ml so drinking 6 250ml shakes throughout the day. The only problem is i'm stuck with just the standard vanilla for the time being but that will be sorted soon I think.

I think there was about 6 flavourings to chose from incuding chocolate and even coffee, do you also have the shakes cold? Have you been given the blue cool bag as well?

I do hope the 6mp can sort things for you long term, as you can see from my sig I am on it and so far so good.

I make up a jug first thing in the morning and have my first shake at that temp then put the jug in the fridge to get it cold for the rest. I actually dont mind it either way. All I was given on discharge was 12 tins of modulen powder and brief instructions on how to mix it. The dietician says they will phone me tomorrow to see how im doing.

I'm hoping all this works this time and im determined to make it work. I'm not allowed infliximab as there is a possibility that I have latent bacteria that may cause TB in my body so cant use that!

Fingers crossed hun, please keep us updated on how you are doing.

Hi there and welcome to the community I'm sorry you're having so much trouble Various things:

1. The 4g of mesalazine probably isn't going to do much for you.
2. 25mg of 6-MP is a VERY LOW dose. Did they do a TPMT enzyme or genetics test on you that made them think that low of a dose would do anything for you?
3. I'm glad they have you on Modulen. Hopefully that will help lead you to remission but I question that the 25mg of 6-MP and 4g of mesalazine will keep you there. Have they brought up the idea of a biologic such as Humira or Remicade to you?

Again, welcome!