Share Facebook
Crohn's Disease Forum » Your Story » Hi - Liquid Nightmare


08-03-2015, 04:36 PM   #1
Kieran1uk
 
Kieran1uk's Avatar
 
Join Date: Aug 2015
Hi - Liquid Nightmare

Hi,

I'm new here...was diagnosed with Crohn's on Friday, they have put me on a liquid diet of fortisip bottles (9 a day), water and hard boiled sweets...

Let's just say, I'm feeling a lot better but slowly, ever so slowly losing the will to live...never have I wanted food more than now.

Does it get easier? How do I cope best?

Thanks

Kieran
08-03-2015, 07:45 PM   #2
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
Hi Kieran - glad to see you are feeling better, remember that the liquid diet is only temporary to help you to be feeling better and to give you gut a rest. Have you been prescribed any medications yet?

I'd take things one day at a time - don't read too much on the internet as it can be full of worst case scenarios. If you look around the forum you will find many different stories and experiences with the disease, treatment etc.

It can be possible to live a full life, often the hardest part is finding that right balance of medications, personal belief, lifestyle and doctors who will treat you as a person and not just another statistic.

We are all here for support, if you have questions please don't be afraid to ask...there are many answers to questions probably posted here on the forum already - exploring the different posts may provide support in itself.

Cheers - Lisa
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
08-03-2015, 07:55 PM   #3
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
Kieran1uk,
If your comment about losing your will to live is serious-please let your health professionals know this so they can help you feel better mentally as well.

The short answer is to your question is yup-it gets easier.
However that doesn't mean that this treatment is easy.

Also, if you were just diagnosed then you are not just coping with the treatment--you are coping with the new knowledge of living with a chronic disease that at times can cause serious problems with your health and life. Educating yourself about the disease and your treatment options and finding a health care team that you trust and that you feel confident are doing their utmost to help you is a good place to start.

As for the drinks--drinking lots of additional water seems to help some, chilling the drinks and drinking through an enclosed lid (like a sippy cup) helps some cope with the taste and smell of the drinks, and some even give up on the drinks and do it through a nasogastric tube instead.

Knowing why you are on the drinks, for how long a time period, how you will be monitored for improvement or a poor response to the treatment, what the plans are for helping you to return to eating and what the long-term treatment plan is for maintenance of remission all helps one to cope with the drinks for a specific amount of time.

If you don't see the need for the drinks it is really hard to stay on them for treatment.

The term for the complete liquid diet that you are on is called Exclusive Enteral Nutrition (EEN or EN). Here are some links that may help. Many children are on this treatment, so one of the links are for the Parent's section because the parents' have helpful info.

http://www.crohnsforum.com/forumdisplay.php?f=161
http://www.crohnsforum.com/showthrea...576#post694576

May you soon be feeling better.
__________________
Diagnosed with IBD Sept. 2010
Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
08-03-2015, 08:19 PM   #4
Mr chicken
Senior Member
 
Mr chicken's Avatar
As others have said it dies get so much easier
Shaved ice - put it in a bowl -sprinkle boiled sweets that are crushed on it
Chewing is a need that helps to do daily
Ask about gum - most permit on stick per day
Drink throughout the day so your not hungry
Some drink while doing other things - avoiding the dining room table .
Some like smell plates -- others don't
We set one week goals for Ds when he was 7 and did compete een
He drank peptamen jr orally for 9 weeks with no food.
The first and last week were the hardest
Crushed boiled sweets can be put in a cotton candy machine to make cotton candy as can pure cane sugar
Just a different texture
These can be make into cupcakes if placed in to silicon cupcake holders with feet or shaped cakes when out at a party with food
Only a bite or two but worth it
Focus on activities with friends and family where you are doing something
Not just eating ...
Pure sugar "cookies" can be made if you boil down cane sugar and water and place in silicon shaped molds
Reward yourself at the end of each week - shopping , trip etc...
Ds is on partial enteral nutrition with the crohns exclusive diet right now and has been for over 3 months
Mostly formula still but occasional food helps a lot
__________________
DS dx at age 7 Crohns
Humira 40 mg every 10 days
Mtx 12.5 mg -due to juvenile spondyloarthritis associated inflammatory bowel disease

Vsl#3ds iron Zantac folic acid


Aka MLP....
08-03-2015, 08:20 PM   #5
Mr chicken
Senior Member
 
Mr chicken's Avatar
http://www.ncbi.nlm.nih.gov/m/pubmed/24983973/

Partial enteral nutrition diet woth crohns exclusive diet
08-03-2015, 08:51 PM   #6
teeny5
Senior Member
 
teeny5's Avatar
 
Join Date: Jul 2008
Location: California

My Support Groups:
Hi, it does get better. You will find what works best for you with diet. Liquid should just be temporary so your digestive tract can heal a bit.
__________________
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-03-2015, 08:53 PM   #7
Justanothercp
Senior Member
 
Justanothercp's Avatar
 
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
What Meds have they started you on?
08-04-2015, 05:43 PM   #8
Kieran1uk
 
Kieran1uk's Avatar
 
Join Date: Aug 2015
Hello, thanks so much for all your support and helpful tips etc. I'm on liquid diet not 8 weeks, and antibiotics for two weeks...then an endoscopy to see where we're at. At the moment feeling great apart from the drinks, is there nothing else I have have that's liquid like soup or bovril?

It's my birthday today (4th) so it's been quite challenging today lol...but I'm a fighter and life has to keep moving :-) again thank you all for your kind words

Kieran
08-04-2015, 06:00 PM   #9
Madhu
Senior Member
 
Madhu's Avatar
 
Join Date: Jul 2015
Location: New Jersey

My Support Groups:
Happy birthday Kieran Sorry you got diagnosed with this terrible thing. But the beginning is the hardest, it definitely gets easier and you can try to live an almost normal life. My hubby is slowly getting on track after going through months and months of hell. I hope you have a good GI who knows what they're doing. Proper diagnosis and good GI are very important. Feel free to talk whenever you need to, and keep telling yourself it's going to be okay, because it is. Lots of luck
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-04-2015, 07:17 PM   #10
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Hi Kieran! Happy Birthday! And welcome to the forum!

Yes, doing a liquid diet can be tough. The beginning can be hardest...but then sometimes it will just be hard because you WANT TO EAT. I've been there for sure.

As others have said, when it feels impossible, it's really important to remember that it's for a set amount of time and not forever and that your gut needs the liquid diet for the 8 weeks so that it can heal. Because even though you're already feeling some benefit, which is great and I always think goes some way to help with motivation, mucosal healing of your gut takes weeks and achieving mucosal healing improves your longterm prognosis.

I found it helped me to think of it as me choosing enteral nutrition as a treatment over steroids and that sense of it being my choice helped me complete the weeks of the diet. Btw a liquid diet is better for mucosal healing than steroids, in adition to avoiding the side effects of steroids.

I've always found distraction vital when I was on a liquid diet. I'd read or watch tv while I drank the drinks and that helped me associate them with something pleasant. I also felt I coped better if I stayed away from my family eating.

Are your doctors talking about maintenance meds for you or just waiting to see how you do after the 8 weeks on EEN?

It sounds like you're thinking really positively and I'm sure you'll manage the 8 weeks, even though it'll be tough at times. If you really feel you can't cope with just the Fortisips then there has been some research that shows you can get the same results with 90% calories from a liquid diet and 10% from food so you could discuss that with your doctors if you need to do something different. And then there's the partial enteral nutrition diet that Mr Chicken linked to which would have you eating half your calories from a very restricted list of foods and half from Fortisips. This diet has (in a very small study) been shown to be as effective at inducing remission as EEN and steroids.

Best of luck
__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
08-04-2015, 07:25 PM   #11
happy
Senior Member
 
Join Date: Nov 2010
Location: Alberta

My Support Groups:
Kieran1uk,


Special occasions can certainly be difficult to manage when you are on the formula diet. Just remember that it will not always be like this.

It is not recommended to add other liquid foods to your enteral nutrition unless your doctor or nutritionist has told you specifically that those foods are allowed on your diet. If you are going to go through the effort and difficulty of using EN as your treatment initially, it only make sense to give the treatment the best chance to reduce the inflammation as fast as possible.

EN is thought to work by changing the type of microbes in our gut. The special composition of the formula makes it easier to digest and seems to change the flora of the bowel. Eating food (even liquid food) reduces this effect. However there are some studies (mostly on children) that have found allowing some food with the EN also induces remission and maintains it.

You could ask your doctor about this approach if you really feel that you cannot manage on the EN alone. Here is some info about this approach:
https://www.youtube.com/embed/6EbHUYy5ePg
Reply

Crohn's Disease Forum » Your Story » Hi - Liquid Nightmare
Thread Tools


All times are GMT -5. The time now is 08:27 PM.
Copyright 2006-2017 Crohnsforum.com