On an elemental diet and about to go insane!

[scotishcanadian]

I'm currently on an elemental diet and seriously, sometimes I just want to hit a wall. I had a ng tube for 2 months and just got a g tube placed. Whenever I ask my doctor when I'm going to be able to eat again, he never gives me a clearly defined answer. It's so frustrating! On top of that I have college classes to worry about and missing school right now because of the healing process for the g tube surgery. That and my family keeps on insisting that 'it's not that bad' to not be eating. Look, if you take away one of a person's survival instincts [eating!], they're gonna be a little peeved because that is what is in our genetics for us to do as humans. It's natural and normal. To deny that is like telling a lion they can no longer eat meat and expecting them to be okay with it. And to make matter worse, I'm having a decent amount of bleeding when I go to the bathroom still and I've been following the diet perfectly and haven't eaten anything by mouth since the g tube placement last monday.

Well, now that I've complained y'all's ears off, any suggestions on how to cope with this?

 

[soupdragon69]

I am back on elemental full tilt this week after much debating with my gastro team and them wanting me to hold off so they could run extra tests.

I originally was on elemental 028 extra when I was first diagnosed for 6.5 months. During that time I tried eating twice and was doubled over in agony. I got to the point though where all I was desperate to do was eat!

You are very right that eating is one of our survival instincts and its also incredibly sociable. I was invited out tomorrow with workmates for lunch - had already told them I was starting my "drinkies" and they originally said ok we will have something at one of our homes then you can bring your drinkies but that obviously fell through. At the minute because I am just settling down onto them I dont want to put temptation in my way.

Thing is for those who have never done this kind of thing its impossible for them to understand the mental and emotional side of it all too. My husband asked me this morning at the supermarket what I fancied for dinner lol then kicked himself. It's a natural thing that takes up a HUGE amount of our daily lives so that if we arent eating we are usually planning or thinking about it.

How long have you had your G tube? Its not so much my gastro team but my asthma and allergy consultant that wants me on elemental for life as he says its the best he has ever seen me health wise. My gastro nurse told me last week I needed to go away and live somewhere where I could grow my own veggies and live free from chemicals etc. Easier said than done. I told my allergy consultant to lead with the elemental and I would follow him! His answer finally was I dont need them you do!

How to cope? Well things I try to focus on are that the elemental is directly absorbed in the first metre of the small bowel so I am more likely to be getting the vital nutrition I need rather than if I was eating and losing most of it. I see it as my own special brand of "fast food" that I dont even have to cook, I have no dishes afterwards except for my shaker for the powdered version and an empty carton when I have the premade stuff. It allows me to focus on other things in my life and saves me a fortune on food bills!

The above doesnt mean I dont have tough times too though. When it hits me I try to something to occupy me. If I dont have the energy I go and have a sleep. I go and talk to someone if I need to talk about the elemental and how hard it is like my husband but mostly will call someone to chat - even for a few mins - and distract me.

Another thing I did when on it previously was create my own recipe book of things I could make that I could eat when the time came to reintroduce. The very first thing I had was a small cooked chicken breast and a little mashed potato and boy did I drool! It also felt very foreign in my mouth to eat again and had to chew really well and then cope with the after effects of my gut getting used to food again.

I totally understand why you are so frustrated. Where is your crohn's and are you still losing a similar amount of blood to before you started the elemental? Hope you dont mind me asking and also that you manage to wade through my epistle!

Keep posting. Thinking of you ((hugs))

 

[scotishcanadian]

See, the thing is, I don't feel any different when I eat. The only difference that I sometimes notice is I get a little bit more crampy and have a little bit of blood. I didn't have near the amount of bleeding that I have now before I went through the g tube surgery. And before that [when I just had a ng tube] my doctor was allowing me to eat a meal twice a week with a snack once a week just for my sanity. So, the fact that I'm having more bleeding now with absolutely no food is really ticking me off right about now. I've had the g tube since last Monday when my surgeon placed it, and it's healing alright and everything, but seriously this elemental diet is driving me insane. I'm on Vivonex, which is low fat at least, but still. The only bright side I can seem to find with this diet is that I'll have my cute little figure while I'm on it considering I can control the exact amount of calories that enter my body. They gave me a back pack portable pump as well, which makes it a whole lot easier than the gravity feeding that I was doing when I had the ng tube.

As far as food bills go, it is expensive for me. It's $11 a day, which for one person in my house adds up. Thank goodness my parents are willing to take care of it for me since I haven't been able to work for coming up on 3 months because of this whole thing. And while I love cooking [seriously, I really love it] it kills me to think about all the food that I know I can't have. It seriously gets to a point where I get so frustrated sometimes that all I want to do is sit there and cry or maybe scream in an empty room. I never noticed it before going on the diet, but you're right about our lives revolving around food 24/7. My dad especially eats all the time because it's how he copes with things in his life. So at least five times a day or so, I have to look at or smell some dreamy food and hold myself back from going crazy. When I was hospitalized last week after the surgery it wasn't nearly as hard because people weren't constantly throwing food in my face and all of my senses. It seems like on this diet your sense of smell heightens exponentially. Like, if my mom were to cook bread say, the day before, I can smell it the next day still. It's like everything in my body is protesting this entire thing.

Right now I'm not completely sure where my inflammation rates and everything are at because they haven't done a blood test for a couple of weeks, but last my doctor checked my sed rate was somewhere in the late 30s if I remember correctly. Based on all of the blood I've been seeing these past several days I think it may have gone up to the mid 40s or so by now. He should be taking some blood this Friday when I go for my post-op appointment. As far as medicines I'm on right now: pentasa 250 mg x 14 pills a day, probiotics, and prednisone 20 mg [Which they had been trying to ween me off of before the surgery. I was down to 10 mg from 40, but they just put me back up to 20 last night because of the bleeding.].

Thank-you so much for replying so quickly to my post, it's nice to be able to talk to someone about this who actually can relate.

 

[Misty-Eyed]

Ah I feel your pain. I was on it for months and months when I was about 12, the whole time with a ng tube. It was horrific. It didn't make me feel ANY better and I used to puke my tube up over night alone with all the feed in my stomach.

But yeah, you never realise how much food means to you till you're not allowed it. It's such a sociable thing too. I ended up clinically depressed and had to go and see a child psychologist in the end! I don't really think my parents truly knew what I was going through and thought nothing to spoil themselves in front of me foodwise. Their line of thought was, I have to miss out, but why should they?

Be careful about cutting the calories through controlling how much you give yourself. I was a little stupid a few years ago when I was on it for 6 weeks and decided to drink just two 330 calorie drinks a day instead of six. I caught a stomach bug and ended up in a bad way because of the lack of calories!

Anyway, in terms of how to help.. there's not much I can say really! I got told to treat yourself in other ways. My sense of smell was really good when I was on it and so it was suggested I treat myself to aromatherapy or something along those lines. Just pamper yourself and do something just for you.

 

[handle]

Hi,
Not sure why you are on nil by mouth. You shouldn't be that way for long - there's no point to it unless you are obstructed. Your illness needs to be controlled in other ways. A long while back I was on TPN for 6 weeks trying to avoid surgery due to obstruction, and it was very useful. Even then I was ok sucking on lollies and sipping lemonade - it made no difference as the stomach digests that stuff. You say it doesn't bother you much to eat so I would have thought following a low residue diet more sensible - and far less of a torture! Get a second opinion I think. Good luck.

 

[scotishcanadian]

Misty-eyed, I can definitely see how you could end up becoming clinically depressed on something like this. What gets me is I have my whole family telling me that 'it's just food' and that I have so many other things that I can focus on. Which, yeah, with my head I get, but in the end doesn't click with me. So, instead, I'm left feeling bad about my want to eat as though it were some kind of sin or something. I am going to end up having the worst relationship to food if I ever get to eat again someday.

And Handle, I've considered getting a second opinion, but anytime I bring it up my mom is like "No, you're doctor knows what he's doing" and since I'm still seeing a peds doctor [I'm recently 18] and it's through the navy, I'm a bit stuck. It seems like this doctor really cares, but that doesn't change the fact that I just went through a major surgery and am still not feeling better, in fact, in certain ways, worse than before it. I'm allowed clear liquids with the elemental diet, so I drink crystal light and water all day. I also am allowed sugar free gum, so I go through about two packs a week. All I know is that there has got to be a better way than what I'm having to do right now. When I was on the forum yesterday I was looking through some treatment options, and I found 4 that my doctor has never mentioned to be before and yet he insists that he's tried every medication possible on me [prednisone, pentasa, methotrexate, 6mp, remicade, humira, antibiotics] and that my only remaining options were an elemental diet or a colostomy. That bit ticks me off. It'd be one thing for him to tell me about them and then explain why they wouldn't work on me, but to just not tell me about them? That's severely messed up.

 

[Misty-Eyed]

The elemental diet has been actually shown to produce remission in some patients and does actually help a lot of people. For start it just gives your intestines a bit of a rest from digesting normal food all the time.

Personally it didn't work that well on me which is also why it was frustrating. If I'd seen some really good results, it may of been worth it.

Don't worry, you will get to eat again. I still have some food issues but I REALLY don't take food for granted anymore. But just think how strong you are to have gotten through this. Not everyone could of done the same.

 

[handle]

You could add some clear soup..at least it's hot. Also, you might try skipping the probiotics for a while. Some people react badly to certain probiotics and need to try other ones. Misty-Eyed is right about remission induced by elemental diets - it's rarely done for any longer than 6 weeks because of the obvious negative impacts, and because the result should be known by then. That sort of diet is often followed by low residue, or one by one food introduction. Keep yourself distracted!

 

[KaLa]

I think that you are really brave and strong. Don't give up! I am in a bad flare right now, and can only eat mushy veggies and rice. I am really cranky and frustrated by that. It is hard enough not being able to eat anything you want, but not to be able to eat any solid foods must be really difficult.

 

[scotishcanadian]

I tried the clear chicken broth thing a while ago, but I've found that if I try to satisfy myself with clear liquids like I would with food, I just frustrate myself even more [weird, I know]. So, for instance, I used to just eat garlic salt, but then it reminded me of garlic bread [one of my favorite foods of all time] too much, so I stopped. I appreciate the suggestion though, handle. I really do enjoy certain types of tea when I get the chance to have them. I tried a chocolate one a few weeks ago and it was wonderful. :]

I'm just at a point where I'm ticked off right now at the state of my health and I just have to power through it. :\ I really appreciate the support guys. It means a lot. :]

 

[partlycloudy]

I've never done this but have fasted, both optionally and for surgery. Anyone who thinks not eating is easy needs to try it for more than a day or two.

I basically just wanted to offer my sympathy and empathy to you all.

 

[vickyoddsocks]

Hi Scotishcanadian! (apaologies for the length of this reply, and typo's, but it will be worth it!)

I just read this thread with a lot of nodding.
I've been on the elemental diet now for 672 days!! (Wow, ive just worked that out and amazed myself!!)
I started it in June 2009 voluntarily. Id been on it previously to help me with a rectal abcess and fistulas, and back then it was like a miracle, i stayed on it for 7.5 months then. So i knew how well it worked for me. It was like i didnt have Crohns - well as close as i could get.
During my time on it at the moment, ive had my days when ive 'cheated' and done myself some damage. I completely binged and ate FAR too much and caused myself to have blockages. After this we discovered that i had some pretty severe strictures that id obviously not noticed whilst being on the drinks because it was only liquid passing by them. We tried stretching them to little avail. The diet then became 'non-voulentary', as if i had eaten i could risk a blockage or rupture. The only other option left for me was an ileostomy.

This then 'spurred' me on to carry on with the drinks to avoid surgery. In the mean time i was like a different person! I came off ALL my meds and I lost 3st in wieght (i needed to), and people would constantly comment on how well i looked. I trained and ran a half marathon in 10 weeks (something which would have literally been impossible if it wasnt for the drinks).And i was just living life to the full!! (minus food lol!)

However, at christmas 2010 i allowed myself to eat small ammounts over the 3 days (i did it the previous year with little affect on my health) and then with the intention to go back on the drinks. I looked forward to Christmas eve for MONTHS! Imangining all the things i would get to eat!! But it was too much, after christmas, i just couldnt stop. I carried on eating thoughout January (still small ammounts) but i did this with no reintroduction, and no advice from a dietician, so needless to say by the end of January i was having a flare up.

I saw my GI and surgeons a few weeks ago, and due to the damaged intestine between my strictures and my blood results, AND the previous history ive had with fistulas and abcesses....i now have no choice but to have a permanent ileostomy. I will find out tomorrow my exact date (it will be either the 7th or the 14th of April)

The way i see it, an ileostomy was ALWAYS on the cards for me, but the elemental diet managed to put it off for, what i see to be my most valuble years. I'm 25 now, but was 23 when i started it. And in that time i feel like i achieved SO much that wouldnt have been possible if i was eating food. I would have had to have the surgery years ago if it wasnt for the elemental diet, and i think the impact of that on a 17 year old would have been worse than not having food.

HOWEVER, I am no way saying this is easy! Not a day went by that i didnt get pissed off with it! I just had to keep reminding myself of all i gained. I found some people to be fantastic around me....my dad would eat NOTHING near me, wouldnt talk of food, and would distract me if it was around. However other people who knew me less well didnt make ANY attempt to help me out. I started a knew job whilst on the drinks, in a bar, and at the end of every shift everyone would get takeaway food. I usually just left. Ive had to go to staff meeting and 'cook-offs' (as i was a waitress too) and sit with everyone as they sampled all the food. They just assumed i was ok with it because i was 'used' to not eating! It drove me insane, and when id try to tell them what it was like theyd just look at me bored and say "well if it makes you better to not eat then its ok" - Whilst stuffing pizza in thier mouths INFRONT OF ME! I completely know how you feel! And dont get me started on customers who would complain about thier food, when it was something COMPLETELY insignificant! There have been many a time ive nearly bitten my tounge off!! LOL!
My closest friend, the one who would listen to me rant about how hard it was, wouldnt bat an eyelid about eating in front of me - even though she knew how much id be struggling! (its pissing me off just thinking about it!) She had no problem in declaring that she was 'starving!' and when she ate food all id hear was 'Mmmmmmmm, that so nice, oh my god thats amazing! I'm so hungry!' Infact only a couple of months ago her and her partner were at our house and discussing what takeaway they were going to order, and asked if it was alright if they had it delivered and ate it at my house! It pissed me off NO END! Lol!
In terms of advice, its difficult because its only your mental strength that will get you through. Like soupdragon, i used to think about what i would have when i COULD finally eat, and just had to remind myself that food isnt going to run out, and one day when i can eat, i WILL eat! lol! I also have a large collection of kids colouring books and felt tip pens, so i draw, sew, knit, do my nails, puzzle books, anything to keep my hands busy!

I also LOVED telling new people my situation and seeing the look on thier faces when id explain that i havnt eaten ANYTHING for that long! I met a guy on a plane, and he asked if i was hungry as id not eaten (it was a long haul flight), and when i explained he was AMAZED! Said i should write a book. His mouth was open the entire time! lol! I used to find i took a LOT of strength from that, from peoples amazement at MY strength.

However, it bloody sucks, and i cant deny im looking forward to this ileostomy so i can eat, however im actually scared at how fat im going to get! So I also know how you feel about the relationship with food. I wonder sometimes am i ever going to be able to look at food normally. When i have cheated in the past i felt SO guilty! Like a criminal! Like i was letting my entire family down. When id buy something at the supermarket id look around to see if anyone i knew was about, and thats an awful feeling.
And like you SO RIGHTLY said, its a NATURAL thing to eat! So its SO SO SO difficult to constantly deny yourself of that when your body is constantly screaming out at you to eat! If only there was a button we could switch off! lol! It really is awful, and untill people have experienced it then thay cant really understand.
But many of us on hear feel your pain! Vent ALL you want seriously! I'll vent with you!!! But try to remember, i believe, it REALLY will make you very well, and it will be COMPLETELY worth it!! When i look back over the past couple of years i dont remember 'not eating', i remember all the amazing experiences ive had BECAUSE of the drinks, and how lucky ive been
Chin up, feel free to PM me anytime
Vicky
x

 

[soupdragon69]

What a beautiful post Vicky....

I agree with everything you have said. What is keeping me going at the mo is knowing how much better I felt when I was on the elemental before. Both my husband and stepson eat in front of me. However, my husband is looking at having gastric bypass surgery and is encouraged by his cardiac and diabetic consultants. He was saying to me tonight he worries about how he will cope with the changes and different foods he will have and different consistencies etc and I have said it comes down to what he really wants for himself in the long run of life.

We dont go onto elemental lightly and we know the determination it takes every single minute of the day. All day today I have thought about food but if you told me I could have anything I wanted I would refuse because even though I crave it I know I would feel terrible afterwards with pain and running to the loo etc.

I too lost weight when on the elemental approx 25kg and dropped 4 dress sizes at the time. Due to the joys of pred in long runs and multiple occasions I have put it and more back on so am looking forward to feeling better AND looking better too!

My gastro team say I am the only patient they have had who has been on elemental more than a few weeks and does really well on it. In truth I found that it has taken me almost 18mths to get to the point where I am able to cope mentally and emotionally with having elemental totally again. I would use it intermittently with food across a day but not go fully onto it. Because my asthma/allergy consultant is adamant elemental is the only thing that I should have and kept drumming it into me at each visit I ended up depressed. It has taken me since last Autumn to "work through" things and feel I am seeing light at the end of the tunnel and am much more positive now.

For me rather than strictures I have widespread generalised inflammation and when my guts play up it triggers my asthma and skin big time. Steroids are great when on them and I feel like my old self again BUT I have huge flare ups right across the board when coming down off them. This time I have been on pred from boxing day til last Thursday (24th) and my skin flared so badly I just itched and burned 24/7, it affected my eyelids as well badly and I was coping with it until my eyes were affected! NOW my skin is starting to settle BECAUSE I am onto my elemental drinks fully - amazing isnt it?

I truly wish you well for your surgery Vicky. ((hugs)) keep us posted please!

 

[Junot]

you ladies are amazing

 

[Rachiep]

Hi,
I am new and haven't posted before but just had to say that I have been on elemental a few times as it really helps me and I am trying to avoid surgery for as long as possible.

I have just come of it after being on it all of January and February. Whenever I had it I found the hardest thing was losing out on the sociable side of food. So I never stop people talking about what they are having for tea and whats in their sandwiches etc. I also found it really helped to cook the meals at home even if I wasn't eating anything. With food it is not just the eating but everything else that goes with it.
It helped me to still be involved with the meals and still sit at the table with everyone else with my little carton rather than going into a different room.
That's not to say I didn't have cravings or didn't fantasise about food. I am now on a strict low elemental diet with E028 cartons for extra support/healing benefits and still have the food cravings as I am still not allowed to eat the food I am craving for (its only a cheese and ham toastie but totally off limits at the moment!)

It is difficult but take each day at a time and before you know another week will have gone by and then another.

Hopefully you will have some answers soon.

Rachael

 

[scotishcanadian]

Thank-you for the support and words Vickyoddsocks, Soupdragon69, and Rachiep. I wish I had the same determination as you guys. My problem is that I feel fantastic when I get to eat a real meal. I don't feel more crampy or anything like that the next day after I eat, either. When I went to see my GI yesterday he said that I can have something to eat a couple of times of a week for my sanity because he can't prove that the elemental is helping me and not the 20 mg prednisone [I just upped from 15 mg a few days ago. I was previously trying to ween off of 40 mg.]. When I see him on Tuesday he's hopefully going to be starting me on Cimzia. Remicade and Humira both failed on me, so I'm praying to God that Cimzia works because after that all I have left in the medicine department that I haven't tried yet is Tysabri and Low Dose Naltrexone. I spoke to him about those too, so at least he acknowledged those medicines and said that if all else fails, he'll send me to John Hopkins. I just hope I can find a medicine that works so that I can go back to have some normalcy in my life in the eating department.