Humira and Elemental Diet

[littlemissh]

Humira and Elemental Diet.

Just been contacted by my consultant to say he has put into the PCT for funding for Humira for me. I will have to have a look on the Humira section and see how long it takes for it to work on average.
Also on the cards is an elemental diet.

I currently am on overnight feeds via a nasojejunal tube but can take some small amounts of food and drink orally. He says for the elemental diet 'you will only be allowed EO28 via NJ with no other foods'.

Does anyone know if that excludes all drinks as well. Also I'm not sure how it will be given as you can't bolus into the nj tube like you can with an ng tube .I vaguely remember my dietician saying you have to decant the cartons...into what..do I keep using my pump??
I've had a look on the enteral feeding subforum already with no answers. I don't want to bother the dietician until i know for definate I am having it.

I hope he decides against it, I've been on EN feeding already since nov 22nd.I've had liquid only diets in the past - but not to even have a cup of tea - I'm an English person for goodness sake...how can I do without my cup of tea.
I'm so looking forward to be able to eat normally again ....so come on Humira, do your magic.

 

[happy]

Hi littlemissh,
First of all I am sorry to hear that you have been continuing to have such a rough time with getting some nutrition into you. I sure do hope that 2012 is going to be a better year for you. (I have already decided that it is going to be a better one for me!)

I do not have any experience with tube-feeding personally. When I was consuming the EN drinks orally (VivonexPlus), I only consumed the drinks and water--no other foods or liquids. I chose this method to follow the protocol from Addenbrooks Hospital and Dr. Hunter's book, IBD: The Essential Guide to Controlling Crohn's Disease, Colitis and Other IBD's.

Researchers do not know why consuming only the EN works to induce remission (as well as prednisone alone does), but their theory is that the bowel flora is changed from a hospitable one for the inflammatory process to one that is not. When food is reintroduced, the flora is changed again, often allowing the inflammatory process to flourish again. Researchers have noted that some people can maintain the remission induced by the EN by consuming foods that have been noted to not bother people with inflammatory bowel conditions and avoiding those that do, on a full elimination diet.

If you were considering using EN, followed by an elimination diet for your sole treatment then I would say that no, don't drink the tea until you are in remission and have eliminated the tea as a digestive irritant, particularly as caffeine is one of the 'foods' that is limited until the very end of the elimination diet. However, as EN can be used for a variety of purposes, and in your case it looks like it is being used as nutrition only while you wait for meds to work, I can't see why it would be a problem.

Perhaps your doctor is thinking that because of the placement of your tube, in the jejeunum, rather than the stomach, you can't digest anything other than the formula. More info from your doctor would probably help.

Good luck with your treatment littlemissh. :goodluck:
May you soon be feeling well.

 

[littlemissh]

Thanks Happy,
It was actually a gastro from Addenbrookes that suggested it when I saw him on friday but he's left it up to my local consultant and me to decide. I had a feeling it was water only.
Question is do I want to do it. Perhaps Humira on its own will work but if they think going elemental will help then I guess I'll give it a go. I need a crystal ball !!

I'm booking a table for a slap up meal for April Fools Day - anyone care to join me?

 

[happy]

I ended up being on the EN a lot longer than I anticipated and I was always expecting to go off it soon. Perhaps deciding on a minimum amount of time that you are willing to do it for to start will help. Then deciding along the way what criteria would keep you on it and for how much longer each step of he way might help. Then you are only committing to short bursts of time if it does take awhile for both the EN and the Humira to help your symptoms.

As for an April Fool's Day meal--I'm all in. Now I have several months to dream about what foods I am going to eat--and it will not include rice!! :ytongue:

 

[PaulPhoenix]

I will. I've got a flexi-sig next Tues to confirm my Crohns's is still active before starting my elemental diet. Elemental 028 (banana, grapefruit and something and pineapple if I remember my choices). My dietician said I can have fruit teas while on the diet but I was planning on not having anything other than water and chewing gum for my breath

Good luck!! I'll be posting my experience on here in case anyone's interested in following it. I feel like the Crohns's is active still, although I could just be getting a little soreness from scarring (no D you see). Anyway, I reckon I'll be phasing it in next week...

P

 

[happy]

Hey PaulPhoenix,
May all go well for you on the EN.

What do you want for your meal?

 

[littlemissh]

Thanks for your replies.
So we may be following the elemental diet together then Paul. Chewing gum is a good idea, I was thinking it will be odd taking nothing by mouth but water(as mine will be down my mate the tube! ). Fruit teas allowed...how do you know which ones as some have all sorts of weird things in them...think I'll give them a miss as they always smell nicer than they taste. What do the 028 cartons taste like then?

 

[Angrybird]

I'll come! It is not much of an option they have given you is it I really hope the Humira can get you sorted littlemissh :hug: I wonder how quickly this should kick in, has the doc said? Hopefully if this is quite fast acting perhaps you will not need to be in the EO28 for long.....

Paul - please do keep us posted on how things go next week.

 

[littlemissh]

I'm going to have deep fried brie with salad for starters, then chicken casserole with herby dumplings followed by spotted dick and custard. Yum. Then some after dinner mints.
And you guys, what will you have?

 

[Angrybird]

FYI, personally I found the E028 drinks rather disgusting taste wise, however my taste buds may be different to yours, I was allowed to drink RIbena so I drank a lot of this (still do actually) I must say the best milkshakes I had was Modulen, not sure if this could perhaps be an option for you guys if you cannot get on with the other stuff either?

 

[littlemissh]

Just seen your reply AB. Unfortunately I wasn't in when he rang so he emailed me and so couldn't ask questions. I have fired back a few questions. He said he is sending an outpatient appt so hope its soon. He said he has sent the form to the PCT so just all the pre injection screening to do.
I will be asking how long it should take...hopefully not too long.
How you doing AB, you just restarted aza didn't you.

 

[Angrybird]

I will have chicken liver pate with toast and onion chutney for starters, followed by fillet steak (cooked medium) with chips and garlic bread, for dessert it must be the chocliest, gooiest brownie with lots of choccie sauce and vanilla ice cream.

 

[PaulPhoenix]

For me: Something Japanese, maybe a beef ramen with miso soup on the side and a decent whiskey. Follow with 20 chocolate profiteroles

E028 is fairly grim. Some of the flavours were horrific. Banana was by far the nicest. But it's in a powder you mix yourself. I reckon the colder the better for all of it!!

 

[Angrybird]

Not doing too bad LM, feel a bit weary and had a couple of rumbles hence back up to 25mg of Pred, I am calling my GP tomorrow to see if I am allowed to go up to 50mg on the Aza as she should have Friday's blood results available to her now.

Paul - totally agree that this drinks are better when they just come out the fridge, you can try and tell yourself it is an actual milkshake then...Hah!

 

[happy]

Since I'm dreaming, I get to have several meals. The first one will be a starter of spring mix with a fig and basalmic vinigrette, a main of garlic lamb chops with yam fries (I think people from the UK call them chips) and steamed broccoli, and for dessert, a dark chocolate hazelnut tart (not too sweet) with a scoop of really rich vanilla ice cream. Cinzano to start, red wine with dinner and Frangelico with coffee after. YUM!! :biggrin:

I'll fill you in on the other meals as I think of them.

 

[chrisnsteph1022]

I'm going to have deep fried brie with salad for starters, then chicken casserole with herby dumplings followed by spotted dick and custard. Yum. Then some after dinner mints.
And you guys, what will you have?

I do not understand British, so I have to know: what in the world is spotted dick?? Here, dick is slang for penis. So your 'meal' made me giggle.

 

[Angrybird]

:rof:

 

[littlemissh]

Steph,
Spotted Dick is a steamed sponge pudding with sultanas in it! Very nice - almost the same as jam roly poly, steamed treacle sponge etc.
And dick is also slang for penis in the UK, as is willy. My children take great delight in asking for spotted willy for pudding. I was once in a pub and was ordering spotted dick and before I knew it I had asked the waiter for spotted willy!! Very embarrassing.

 

[littlemissh]

Just been rung by the dietician. My consultant has contacted her to start me on the elemental diet as soon as it can be delivered. :-(
She said only water for the first 2 weeks ( 028 cartons decanted into a sterile container and pumped overnight via my nasojej tube). Then lucky me I can have weak black tea or coffee for the next 4 weeks. She says it will be for 6-8 weeks.

I suppose if it works...at least I will be done by our April fools meal.

 

[chrisnsteph1022]

Steph,
Spotted Dick is a steamed sponge pudding with sultanas in it! Very nice - almost the same as jam roly poly, steamed treacle sponge etc.
And dick is also slang for penis in the UK, as is willy. My children take great delight in asking for spotted willy for pudding. I was once in a pub and was ordering spotted dick and before I knew it I had asked the waiter for spotted willy!! Very embarrassing.

It's like you're talking a different language. I've never heard of any of these things! I'll take your word for it that they're good. LOL

 

[Angrybird]

Oh you poor thing! You have led such a sheltered life not to have heard of these culinary delights

LM - that just sucks really, you deserve a super squishy hug :hug:

 

[littlemissh]

It's all happening now. IBD nurse rang me. They have arranged the blood tests I need pre humira and the bloods the other consultant wanted. My gastro applied for the humira earlier this week and it's already approved.
I now have an appointment to show me how to give the Humira and once it is delivered..I start....yikes, its all happening at once. I didn't think it was all so quick- 3 weeks since I was referred by my gastro for a second opinion who I saw last week. )

I think my gastro is fab, he might be a little scatty at times but think he is great never the less.

Getting bloods done tomorrow so just hope I don't need another transfusion as well.

With the Humira and the elemental diet, I have high hopes of being fixed! I have to confess to being a little anxious but I'm sure that will settle.

 

[Angrybird]

Oh my that is quick! Fingers crossed this really turns a corner for you, let us know how things go. When it the appt booked for?

 

[littlemissh]

Thanks AB
,I know I can't believe how quick its been. I think they feel a bit sorry for me with my run of bad luck/poor health recently...must have cost them a fortune - 8 ops, loads of transfusions, 4 ogd's, enteral feeding,fortnightly appts with gastro etc etc...they need to save some money!
My appointment for training is a week on monday to make sure bloods back and humira delivered.

 

[happy]

littlemissh,
Sending you lots and lots of these. :ghug:
May it all go smoothly, and at the end, may you be 'fixed'.

 

[littlemissh]

Well the elemental cartons were delivered today at last, after the prescription going missing fiasco...and no flocare cartons so can't put it through my pump. Great. Every day that the start is delayed is one more day I have to put up with this tube...aaagh. I rang them and had a bit of a polite rant and they will deliver an emergency supply of cartons so I can start tomorrow.

Got to have gastroscopy number FIVE since end october to put a new tube down and check the ulcers / perforation in the next week as well. I thought I would get used to them but really don't like that retching thing.

On the plus side humira coming wednesday and have an appointment on the ward with ibd nusre thursday to start...yippee.

 

[happy]

Jeesh, Nothing goes smoothly for you, does it littlemissh!? What a pain. I sure hope that you get set-up with everything for a fresh start tomorrow.

Ask for some sedation for the gastroscopy, littlemissh.

Last year when I had been so ill, it got to the point where any tiny procedure (like drawing blood or getting my teeth cleaned or even a haircut!) would make me almost pass out because my stress response was so high from being so unwell for so long. It made everything harder.

Now, if I were in that situation again, I would ask for anything to make the procedures easier just to help me have some energy afterwards and not to have expended it all on 'tolerating' the procedure.

Of course, now that I am much better, I can tolerate things like a gastroscopy without sedation with ease again.

You are a star for making it this far with the tube, littlemissh. :medal1:

May your ordeal with the tube soon be finished.

 

[Angrybird]

Prescription going missing and then still not getting it rignt today for you - Numpties! Fingers crossed tomorrow will be the day :hug: Let's hope they don't cock up the Humira :ybatty:

 

[littlemissh]

Started the elemental yesterday once containers arrived. so far so good. Had a wee taste of a carton...yuck, foul stuff - there is no way I could drink 9-10 of those a day! For once I am glad of my tube!!

And...my humira arrived today. My hubbie pointed out we now have about £7,000 worth of injections in the fridge. All booked in for tomorrow to have the stabs..and yet another blood transfusion. Hopefully the end of my too regular transfusions is now in sight.

 

[Angrybird]

Glad that everything has arrived, if you really cannot get on with the cartons perhaps ask about Modulen? This you make up yourself with flavourings that you add. Personally I found this by far a lot nicer than the cartons. Good luck for tomorrow hun.

 

[littlemissh]

Thanks AB, I am actually putting them into a special container and then I have a pump to put it through the nj tube. I just tasted it out of curiosity.

I know it's a bit weird but I am looking forward to tomorrow because humira and the elemental regime is going to work for me!!

 

[PaulPhoenix]

Good luck!!

P

 

[happy]

littlemissh,
Funny how new things that torment us end up being blessings in disguise--I ended up not minding my formula because I was glad that I didn't need a tube!

Glad to hear the EN and the Humira have both arrived. The waiting time has finally ended and the healing has begun. Take it easy--more new things for your body to get used to. May it go well.:rosette1:

 

[littlemissh]

Had my 4 injections on the day ward after my blood. They weren't actually that bad and no after effects. They do sting when going in but no worse than having a cannula.
Before i had them Day ward staff rang GI to come and see me without telling me- said I looked poorly ...bad people! He wanted me to come in for pain relief and scope- I think not, winter vomiting virus sweeping the wards- I do not need that. So agreed outpatient gastroscopy Tuesday and ring if pain etc worse. Mmm.
I have to say, he is such a nice guy as are the day ward staff, after hearing some peoples experiences I realise how lucky I am.

 

[Angrybird]

Fingers crossed those injections kick in nice and quick for you hun :hug: As always please keep us updated.

 

[happy]

littlemissh,
Aww, I didn't realize that you were that close to the edge with the pain and feeling so poorly-- you are way to upbeat in your posts. Good call on knowing that the hospital can sometimes be worse than home, even when we are really sick!

Attention, the Universe--improvement for littlemissh-- now, please!!

 

[littlemissh]

Scope results :-(

Well , had scope- more duodenal ulcers! :-(( , and hb down at 67 so another blood transfusion. Already had 5 units in the last 10 days.
On the positive side I've actually put weight on with the elemental diet in only 6 days!

 

[happy]

littlemissh, :thumbdown:, :thumbdown: and :thumright:!

 

[littlemissh]

Thanks Happy,

I am feeling more than a little fed up with all this now. If I don't start seeing some relief from all this, I shall be looking for a small hole to go and hide in. Got my sad face on today which isn't me really but am needing some good luck. Everyone always says how well I cope but theres only so much that a person can put up with.

Sorry for being little miss miserable.

 

[carolhew]

Oh, I think everyone does need a day when we let our true feelings show! I am so sorry to hear that you are having such a rough time of it now! I am sending you hugs, good luck and best wishes that thing start looking up soon!

 

[Angrybird]

Yay for the weight gain hun but it does suck about the rest. You be as miserable as you want :hug: