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Back from holiday

Hi guys - well I am back from 2 weeks in Bulgaria and everything went fine !!

I did pick up a 24 hour D+V bug which wiped me out but other than that i was fine.

The weird thing was that in the 2 weeks i only had 2 days of the chronic right side stricture pain that i have been getting 24/7 at home.

I spoke to my dietician on return and it seems that by eating a really limited diet due to fear of food poisoning or the like i have identified foods which make me ill.

I was basiclly on a very very low residue diet - i.e no residue at all.

Experiencing first hand how well i can be by avoiding foods has given me the motivation to utilise diet a lot more.

I am having a nasal gastric tube fitted next week to try and get remission by having elemental via a tube for 2-3 weeks and then to devise a diet that has modulan (think it's called that) cartons for breakfast and lunch and then for dinner have fish or chicken.

Veg, fruit and red meat are all out as that seem to be the culprits of pain.

The dietician said that oral elemental has low compliance rates due to the taste ans texture but tube feeding it gives amazing results.

I am hoping to get off the pred whilst on it and then re-assess if i need infliximab afterwards.

Feeling very positive as i am am actualy making informed choices rather than being told what to do.

My dietician has always been great and really informed and thorough wheras the consultant seems to live on another planet.

Seeing the consultant tomorrow so fingers crossed he does not try and over-rule her.

Hope everyone else is doing as well as can be.

Clare
x
 
Pen said:
Hi FL, we missed ya! Glad you are back safe. I feel so bad that you are having a gastric tube. Because you are in so much pain? you cant digest food?

By the way Happy belated birthday on Friday, I believe 34? I missed it on Friday my computer crashed and my daughter is off to Ottawa and go back to University the following year so she can work this year and take a year off. Let us know how you are. Hugs
Basically i am in a lot of pain and cannot get into remission so am stuck on 30mg of pred. The tube feeding of elemental has been shown to induce remission largely better than steroids.

Apparantly the compliance rate with oral elemental is low but with a tube it is higher and has better results.

I am keen to avoid any more medication as Aza, 6Mp did not suit and the next step is infliximab which if the tube feeding works i will avoid.

Before this current flare hit i was adamant that i would not take drugs but would use elemental instead however the flare came too strong, too fast for me to do that.

My dietician is great and feels that we can manage my Crohn's long term with diet and diet replacement whilst avoiding drugs.
 

soupdragon69

ele mental leprechaun
Hi Clare,

I agree about the elemental helping on the remission front. My gastro team really advocate it.

From the tolerance perspective I gotta honestly say I would much rather drink elemental as opposed to having an NG tube to have it poured down. Yes they are an aquired taste but there are alot of flavours and I actually now really like the citrus and orange sachets. I have no problems returning to them if I need to...

I think your dietitian has a really negative viewpoint here and ok being fair its from her experience with patients. Have you tried to drink the elemental? Its best very cold - although I did have a workmate that could only tolerate them at room temp!

I did elemental for almost 7mths last year and it was only towards the end that I found it tough going and thats because the team looking after me in hospital (my own cons was on hols at the time) told me I could eat one day then would change their minds the next!

The gastro team I am under told me they have alot of patients on elemental and very few actually need NG tubes. The majority can tolerate drinking it for 2-3wks and cope well and they found that 80-90% went into remission in their research. They were the leaders in instigating the research in relation to elemental. The good thing about it is you get the proper nutrition you desperately need and dont have the side effects of steroids whilst allowing your gut to heal, rest and repair.

Whichever you decide to do Clare I am really glad you are getting some positive help and able to have decent input yourself into the paths you can take. Truly hope all goes well for you. Good to see you back from hols you have been missed around here!

Keep us posted. Thinking of you ((hugs))
 
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Isla

Guest
I know what makes it hard for me in regards to diet is my kid. It is hard to make gobs and gobs of food for little ones and not have any yourself. Not to mention going grocery shopping for them and making their lunches. In contrast if I was alone I think I would be able to handle a very strict diet. It is much easier to stop yourself from eating something if it isn't in the house and that just isn't possible with kids around. I guess I see it as being harder to quit smoking mainly because I am rarely around smoke - but, food it is everywhere!
 

My Butt Hurts

Squeals-a-lot!
Glad that you had a good time on your trip, with no major upsets.

I just started a low residue diet myself. It's hard at first, but doable I guess. I can't find any recipes. If you get a chance to list what works best for you, either here or on a new thread, that would be great for a lot of us I think.
I know the basics - no skins, seeds, whole grains, nuts, popcorn, I have a list of what to eat and what not, but I didn't know if you have any other good tips.

Good luck with the elemental!
 
O

ozguts

Guest
I had tube feeding and was still getting 'd' and feeling unwell, but it did help me gain weight temporarily when nothing else did, even my bland diet. Nasal-gastric feeding (though initially very painful when they stick it down your nose and you look funny out in public...kids were scared of me...) allows for a slower 'feed' as it can be controlled by a machine that controls flow. You can have it on a night, or not, etc.

I've also had the elemental sachets and found they made me feel even worse as I drank them as a big dose instead of had the food 'drip' into my system.

I just wish I'd felt okay on either. I'd give up food gladly to feel well. As a coeliac I've had to give up a lot anyway!

I recently tried Modulen IBD (which isn't elemental but some said helped) and felt a bit of nausea each time I had it until after two cans my 'd' (which had been fairly quiet) exploded for days. I still suspect corn-sugar and dairy based food replacements.
 
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