Modulen problems - advice please.

[Lulabelle]

Hi there,

I have been reading posts on this forum for some time now and I have just signed up properly.

I came off Humira in May as I was well and wanted to see if I could remain well without any nasty treatments.
After a course of antibiotics, I went into a flare. My consultant (at the time) wanted to put me on high dose steroids and back into humira, I wanted to try enteral feeding, he disagrees with this so I went under another consultants care at a different Trust.

I am just over a week into modulen and my symptoms are a very achy body (lower back/ankle/both feet/knees) no energy and cramps then D when I have had a modulen. I took the sensible approach of sipping each one slowly but still get v.watery D and urgency. I have lost weight with this flare. Had extended right hemi in 2004 and on biologics since then, this is my biggest flare for years.

The dietician has prescribed Fortisip to see if this is better for me as I seem to be reacting to the modulen for some reason. The D is not the same as it is from the crohns which makes me wonder if it's something in modulen. I pick up the fortisip tomorrow.

Thoughts/experiences would be appreciated.

Thanks

 

[JustAYoungLad]

I was on a liquid diet for 2 months in April/May (I think, time goes so fast)

I was on ensure, a similar drink to Modulen and Fortisip.

Generally after being on a liquid diet for more than a week I experienced liquid BM's and urgency. After talking with my GI, I was told this is quite common. If only liquid goes in, liquid tends to come out.

You may experience better with Fortisip or Ensure. Each of the drinks give you all the nutrition you need but are slightly different in taste and formula.

You need to understand if you've got D or just watery stools, as you could have a bacteria bug. It can be hard to judge. I class D as constantly needing the toilet all day. When I was on a liquid diet, it was watery/loose but only once in the morning. With D your going to loose lots of fluid, salts and feel quite weak.

Let us know how you get on Fortisip?

PS. Chocolate flavour is best!

 

[Jmrogers4]

Yes, anytime my son has been on EEN it is liquid in, liquid out but as JustAYoungLad says it is not all day long. He would generally go 1-2 times a day on it, not 5-6 like with a flare or C-diff.

 

[kiny]

Your stool will be more more liquid on any EN, it's not that big of a deal if you get enough fluids, although you should make sure it's not because your intestine is inflamed.

You don't have to be 100% EN, you can use modulen together with regular food.

Modulen is 100% bioavailable, which is why there is little to not "waste" or stool when you're on it.

I don't know about losing weight, I think people sometimes underestimate that you need to eat enough modulen if you go on it exclusively, it's like 30 scoops a day or something, I forgot.

 

[Lulabelle]

Thanks for your replies.

I started fortisip (6 per day) last Saturday. Things have settled more since being on the fortisips instead of modulen. I'm not aching nearly as much - moving a lot more freely and no heal pain now . I do have erythema nodosum, this occurred about a week and a half ago. I would say I am having 5-7 bms a day - sometimes not much comes out though. It's weird as it isn't like I get an urgency all the time. I go when I wake up and then randomly through the day. It might be a get a bit of a stomach cramp with urgency and go and it's watery or if I go to urinate, sometimes I will get a watery bm as well. In the morning it is loose but not watery as such but after fortisips it is then watery. I'm not needing to do bms in the night. Does this sound like it is just the liquid diet and not the crohns as such? I am having a colonoscopy on Monday 9th December so do you think that will give a good picture of what the disease is doing? I chose to achieve remission through elemental rather than steroids/humira, etc. If I achieve remission then my consultant has discussed a diet of 50/50 liquids and solids. Eventually I will reintroduce foods to see what might trigger things.

Thanks all.

 

[Lulabelle]

Just to add, when I do get bms, it is like silt in the bottom of the toilet and the toilet water is then yellow (sorry to be graphic but that's crohns for you)! I just had a fortisip and sipped it slowly and about 5-10 minutes after I got urgency. I don't have much energy, not that I am falling asleep in the day but I'm currently off work sick and not sure when I can go back as being on these drinks makes it difficult to perform a working day. I work in the NHS and sipping drinks through the day would be impossible as I am frontline and I also can't go running off in the middle of a treatment session needing the toilet, it is immensely frustrating being off and I am so bored! I am positive as the arthralgia has really settled down and I'm not getting random stomach pains, the ones I do get are more like cramps before needing to rush off the toilet.

 

[my little penguin]

Keep in mind EEN is just like pred it can take up to 6 weeks to work completely.
Also the minute you introduce food the inflammation starts again.
I wanted to add the longer you are off humira the more likely your body will develop abut bodies to it making it less likely to be effective next time.
We combine en with food plus humira for DS to decrease inflammation.

Good luck

 

[Lulabelle]

Thanks for the reply.

I have been reading Prof John Hunter's IBD book who advises if you follow a diet called LOFFLEX (can be found online) for 2 weeks and then reintroduce individual food groups over a few days at a time, there is a high likelihood of maintaining remission. Also, my consultant informed me that a diet for maintaining remission of 50/50 elemental and solids can also be positive. I am really unsure what do about going back on humira. Not sure if to try this way or go back on humira. I refuse pred - never again. I came off humira 5 mths ago as I was doing well and my idiotic consultant simply said "yes, come off it and we will see what happens." I hadn't been scoped on 4 yrs and I am so unhappy with the management from him that I am now under a different trust with better results, so far.
My worry without humira is a food may not be making me have symptoms but may be aggravating the crohns only to lead to a flare further down the line without any other protection. Also, I have read research literature that states 50/50 elemental/food can maintain remission for around a yr. That isn't long enough for me, I was well on humira for 4.5yrs, right up to now. So currently pondering the dilemma of humira or no humira. We all know the side effects of this stuff is unknown/nasty so that is a major factor for why I wanted to come off it.

 

[Connie01]

Is Modulen just used for crohns in the small intestine?

 

[Lulabelle]

No, I had an extended right hemi and laparoscopy for fistulas following the hemi so the crohns wasn't isolated to the small bowel a few years ago. Not sure where it is flaring at the moment but likely at the join from surgery. I'm having a colonoscopy on Monday so will know where it is at at the moment. Modulen can be used for small bowel and large I am pretty sure. I have 74 tins of it sat unused in my house (as I don't tolerate them), if you would like them haha. The pharmacy will not take them back due to policy and if they are given back, all they do is destroy them which is ridiculous. I'm not giving 74 tins back to the NHS for them to be destroyed, they are perfectly usable and sealed! Not sure what I intend to do with them as yet though.


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[Spooky1]

Hi, and welcome, Lulabelle.

Sorry for the delay in joining in here, but bad Crohns and mum with dementia. Great to have you with us officially.

I feel for you being sick and away from work. I can't work either. I have had a peg for 10 years and an NG before that so I'm well experienced with liquid feeds. Humira gave me terrible side effects, but I have to agree with others that liquid going in equals liquid going out. I still have a stricture with ulcerations and bleeding. Got nice fissure to add to that and the mucus is terrible too. Just having a rough time at the mo, at least plenty of others on here are going through the same. So you're in good company.

I was on modulen for quite some time, but changed to a higher calorie one. On Vital 1.5 now. I was wondering how the colonoscopy went, Lulabelle. Hope the procedure went ok and that you're not too bad now.

Are you still on fluids only, or have you managed to reintroduce solids now?

 

[Lulabelle]

Hi Spooky1, thanks for the reply. Wow, what an utterly horrible time you have had with your crohns. It really shocks me how each individual person can have such different symptoms of the crohns. Hopefully in our lifetime, we will see a cure made.
So are you on a permanent feed, no solids ever?

The colonoscopy, unfortunately, didn't have a good outcome. The consultant saw the erythema nodosum on my legs just before I got on the bed and before he even did the colonoscopy, he suggested going back on Humira.

He did the scope which was rather very painful and I wasn't sedated much and it shows I am still flaring and the polymeric diet isn't working so back on Humira it is. I am just waiting for them to order it now.

I wasn't clear in thought after but I saw 'crohns ileitis' and something about 'colitis' but I wasn't able to ask where it is properly as I was still foggy from sedation. I have an appt on 24th Dec so I can ask where it is properly etc. He took some biopsies so will know more from them too. I think the crohns is in my small intestine but not entirely sure and I don't know what crohns colitis is :/. Oh, I am having an MR of my small bowel on the 22nd Dec so that should show things too.

I am frustrated with the management from the team at the hospital, I feel i am always chasing them for info and nothing is clear. One person says one thing but then another person wasn't aware of what the other had said and it comes down to poor communication between them but while they're messing around, my life is on hold and I want to go back to work asap!

How do you manage day to day in terms of keeping occupied, do you feel frustrated not being able to work and do what you like doing?


Take care


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[Spooky1]

Hi, Lulabelle,
Crohn's/colitis is both. Crohns small and colon is also affected too. I used to have that written. Sometimes my large intestine is bad, but more often than not its the crohns starting in the mouth and going through to the surgical meet up of the small/large intestine.

I do have bland foods, like potatoes and fish, or turkey/chicken.

I find that the sedation for scoping makes me 'high' rather than sleeping. This, as I think you know, is a nightmare as it is painful, even with the childrens size scope.

got a nice appt on the 24th, lol. Well, he's just going to ruin your xmas dinner for you. oh, and no mince pies as the fruit might block up behind a stricture lol. Just have to give your pies to santa instead.

It's a shame you have to resort to Humira again. I really couldn't handle side effects. But if it means your body is healthier and you can get back to work then that is good. But it is hard having crohns and arthritis. I am always extremely tired. I have upped lots of my vitamins recently and feel a tad better. Less anxiety and depression I think. That is a help in itself.

The MRI scan is a lot less painful than the scope and will let them see beyond the ileum to ascertain the length of stricture of crohns area's higher up in the small intestine. hope it goes well for you.

Also hope you have a happy xmas too.

 

[Lulabelle]

Oh yes he will definitely ruin my xmas dinner but when I have healed and can eat a bit more adventurously then I can have a belated xmas meal. I have been pretty much housebound for what feels like ages now, I am going a bit stir crazy and feel quite isolated but there isn't much I can do about it. I just watch lots of Dexter, Only Way is Essex (guilty pleasure) and read. How do you occupy yourself?

I hope you have a great xmas too, whatever you're doing


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[Spooky1]

Pretty much the same. Quite housebound like lots of crohnies. I read a lot, do some art and get on internet to see some nice destinations I can only look at. I say thank god for this forum and the understanding we receive from other sufferers. It's nice to have them here for us.

Hope you have a good xmas too. I'm possibly going to visit my niece and her family for part of the day. They get quite festive, riotous too sometimes.

 

[Lulabelle]

This forum is a great place to go when you need support/advice. People who don't have crohns, simply haven't got the insight into what it is like to live with and how much it impacts on every area of our lives. I just wish we could all magically appear in person for one another when we need it most. I have just finished reading The One Hundred Year Old Man Who Climbed Out of a Window and Disappeared. It is a very light-hearted read and very funny. I'd highly recommend it for cheering up



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[Spooky1]

I have also found the only people who really know what it is to live with crohns are those on this site. It's great to have the proper understanding. Has the old man got dementia? my mum has and she has a habit of going walkies. It's worrying really. I've been doing MOOCs lately. They are Massive Open Online Course's. they are on the Coursera. org platform. At least I get to join in something now. They are free and have discussion forums and you can study something that you love, or just want to take an interest in. You might find them fun.

 

[Lulabelle]

No, he has to live in nursing home because he blew his own house up (long story but a great read, it is fiction). I am an Occupational Therapist and have worked very often with people who have dementia. It is a terrible thing which is only going to grow as people are living longer now. Does your mum have good services in place? That can't be good for your crohns, worrying about mum but that's life for you, never simple and you want to help your loved ones as best you can, even if to the detriment of your own health sometimes.
I am keen to learn British sign language and maybe make that a career one day. I also want to learn Spanish.

 

[Spooky1]

Mum has no care apart from family. I would like to get her to day centres to be able to recollect the older times, but my sister doesn't want it for her yet. It's very difficult. I have a younger sister who refuses to have anything to do with her care. She has always been the one to be cared for by mum, but when it comes back to help her, well, she just won't. It's a shame really.

You can learn Spanish online with something called 'Livemocha.com'. I think there are other courses online, some of which you pay for. There should be language courses available through your library too. You might find some sign language tutorials on You Tube, along with Spanish of course.

You'll have to make these two your new years resolution, health permitting. It's hard concentrating when unwell and in pain, or on pain killers of course.