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Crohn's Disease Forum » General IBD Discussion » First Remission Since 2003!


04-06-2009, 04:08 PM   #1
colin84
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First Remission Since 2003!

Well I never thought I would see the day. I saw my doctor today and he said the magic "R" word! I had an MRI Scan and all the fistulas in the colon have healed, th inflammation has gone and so has the narrowing. And to make things even better there is no sign of the crohns in the small intestine.

As you can imagine I am sooooooooooo happy tonight and now have found my miracle drug - Modulen! I am now starting to slowly introduce food but have decided that Modulen will be my main source of "food" for the foreseeable future.

Im soooooooooooooo happy!
04-06-2009, 04:32 PM   #2
My Butt Hurts
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WOOOO HOOOOOO!!!!!
Way to go! I'm sure you feel fantastic!

Just for those who don't know, when you say miracle drug - it's not really a drug at all am I right? Modulen is a liquid diet?
Are you on any other medications besides that?
Tell us everything! Some people on here are at their wits end feeling crappy, and they'd love to hear all of your details. When did you start it? How long have you been on it?

Happy for you!
04-06-2009, 04:44 PM   #3
Procyon
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Wow, congrats! That's really exciting!

You know, until you mentioned it here, I didn't realize that Modulen could be so helpful. I feel like giving it a whirl myself now. XD
04-06-2009, 05:10 PM   #4
colin84
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Sorry ib my excitement I called Modulen a drug when in fact you are quite right it is a liquid diet designed especially for crohns which contains casein which helps fight inflammation.

I am on 150mg of Imuran but have been on that since 2003 so pretty sure it is the Modulen that has done the trick.

I have been on Modulen for 6 weeks. No food and only drank water in this time. It takes some doing but the results are amazing!

I am now about to start introducing food slowly but staying on the modulen as well. My doc said a study of Japenese people shows that those that combined modulen and food for a year went into full remission.

It is amazing stuff but you have to be disciplined not to eat anything for a long period of time.
04-06-2009, 08:49 PM   #5
JillianB82
 
Great news!!! CONGRATULATIONS!!!!!!
04-06-2009, 11:54 PM   #6
soupdragon69
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Thats great news Colin! Well done that man!!

As we were talking about before on another thread it does take time to settle into the regime and its a particular mindset. You found out that you take it one day at a time - hourly if need be - and that you then work through the tough times because you dont want to undo all the work you have put in to date!

The next hurdle I found hard was when I started eating again after such a long time on the drinks (as you know for me it was Elemental 028 Extra) was enjoying the taste of food again (once I got used to chewing again believe it or not) and wanting to eat all round me! LOL

Think you will find your taste buds will have changed too. Some of the big things I found were I cant tolerate sugar or fat except in very small amounts any more. Which are of course good things!

My very first meal was some mashed potato and a piece of chicken breast. Boy did I drool! LOL

They are right about the impact of these kind of nutritional drinks for Crohns sufferers and I just wished it worked for those suffering from UC but it doesnt. My dietitian was telling me when you have been on them for a long period of time you shouldnt stop them completely and there is research that shows staying on them in a small volume for up to a year after long term use gives the best benefit.

In relation to having food and "drinks" in combo I find I have some element of "looser" stool initially but do feel better in the long run. I am coming to the conclusion that for me as an individual I will need to stay on this kind of combo in the future as each time I try food only I deteriorate again.

I am restarting my Elemental today in preparation for returning to work Good Friday after some holiday time (if my GP lets me when I see him wednesday as he wanted to put me off work 3wks ago!). Then will combine it with small amounts of food and go from there.

Am just so very pleased you managed it this long Colin and are reaping the benefits.

Congrats and well done again!!
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IF YOU DON'T JUMP YOU WONT EVER LEARN TO FLY





Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
04-07-2009, 07:27 AM   #7
colin84
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Thanks for all your messages! I am now hoping this is the start of something good for me!
04-07-2009, 06:41 PM   #8
DanM
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Congrats! What do plan to do this summer to celebrate. Any vacation plans? Any foods you have been dying to eat? Are you planning a good dinner out once you are ready? Now that remission is here, its time to enjoy it.

Best of luck!

Dan
04-08-2009, 08:19 AM   #9
fenway1971
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That's awesome!

I may have to look into Modulen. I feel fantastic but am still mildly inflamed, so technically not in remission. Silly question - is that all you eat?
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04-08-2009, 08:21 AM   #10
Stleger88
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congratulations :-), now just have to make sure it stays there
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04-08-2009, 08:22 AM   #11
fenway1971
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ok - i just googled modulen. i'm so impressed that you stuck to that for 6 weeks. that takes serious will power!!!
04-08-2009, 08:45 AM   #12
Guest
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wow that is fantastic news Colin! well done - it can't have been easy, but it just shows how worth it, it is. hope you stay ok.. do the food intro really slowly & gently.
04-09-2009, 08:26 AM   #13
mommy1st
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Congrats on your remission!!!!!
04-09-2009, 08:35 AM   #14
colin84
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Thanks for all your messages. Yes 6 weeks was a struggle but I was determined to stick to it.

I started eating small amounts on Monday and have been ok. However I am having a rest day today so just having the modulen. My doc has said he wants me to stay on the Modulen for a year and have food at the same time but somedays he said I wouldn't feel like food and today is one of them!

Very strange feeling as been craving food for 6 weeks and now I am allowed to eat I don't fancy it! I feel absolutely fine so I guess its my body telling me to take it slow!!!
04-09-2009, 08:50 AM   #15
soupdragon69
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Thats it exactly Colin.

Its a weird feeling now you can eat you arent interested. Also get full very fast.

I am having one small meal a day and the rest my elemental drinks. I enjoy what I eat but feel better with this plan than eating all the time...

Keep us posted!
04-10-2009, 09:59 AM   #16
colin84
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Yes Jan you are right, you do get full very fast. I am going to have a piece of chicken tonight and see how that goes down. I am also going to make a conscious effort to totally avoid dairy products as I think these may have upset me in the past - have you gone non-dairy?

I went to the pub last night and had a cheeky half pint of lager and today have had no ill effect so hoping that alcohol will not effect me either. However, not going to rush the introduction of it!
04-10-2009, 03:47 PM   #17
soupdragon69
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Hey Colin,

Well done you so far!!

Yes I am both dairy and gluten free on the diet front. Also find I cant tolerate high fat or fibre either - so low residue works.. Like Pen I prefer rice milk but I also have Alpro soya yoghurts which I find tasty and easy to digest. My dietitian said with the Alpro yoghurts its worth trying to get one into me every day as they have probiotics in them too.

Another food that irritates me is maize and its in alot of gluten free stuff but I have found a couple of really really good rice pastas out there now and they are just as good as the "normal" ones. Rice on its own and salads give me the rumble tums so I stay away from them as much as possible or have a little mashed potato and a little rice on my plate to mix with whatever else I am having.

Just shout if I can help in any way ok?

Sometimes its about making small but tasty food. Might be able to come up with some ideas for you.. One I really enjoy is baked salmon, mackrell or trout with a little garlic salt sprinkled over the top and either some dry fried sliced potatoes, a small jacket spud (leaving the skin) or some mashed potato - hey I am irish I need my spuds! LOL

Last edited by soupdragon69; 04-10-2009 at 03:55 PM.
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