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01-25-2015, 08:34 PM   #1
cameronp1992
 
Join Date: Jan 2015
Location: durham, United Kingdom
Liquid Diet

Hi
This is my first post on this forum.
I am a 23 year old male, I was diagnosed when I was 14 with crohns though It had went undiagnosed for about 4-5 years making it quite severe when I was. I was put on prednisolone, aziathiaoprine and modulen liquid diet at the time which worked fantastically with only a few slip ups. This all worked fine up until I was 18 when I had small bowel surgery, I dont know which parts of the small bowel they took I just remember them saying they took "A Lot". After this I could no longer tolerate the modulen drink (my saviour) diarrhoea attacks stopped me from leaving the house and ultimately I had to look for an alternative. I have tried Fortisips,Scandishakes, Modulen and even a juicing diet but all I get is bloating and urgent diarrhoea about 8-10 times a day I am also completely lactose/dairy intolerant although I wasnt before surgery. This is all accompanied by extreme fatigue to the point where I cant even get up the stairs or go to work anymore which I gave up to find a less physically demanding job. although im not a doctor I think my symptoms could be due to my intestines not absorbing nutrients very much. I have heard of short bowel syndrome but my gi has not mentioned this nor my dietician.

Just hoping to find if anyone else has experienced anything similar to this or if anyone knows of an elemental drink that can help that is lactose/dairy and milk protein free. I do not mind how strict the diet is I think I would stay on them for life if I could find one that worked!

I am on
humira, aziathioprine, colesevelam (welchol), vit b 12 injections, calcium, omega 3 caps, probiotics, vitamin a, b, c, d, e
thanks
01-25-2015, 09:40 PM   #2
Nym
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Do I have one heck of a strict diet for you! lol

Seriously: Starting asap. If you are not already filtering your water, 1 Ecobud water filter bottle.
Best quality cheapest meat-on-bone cuts you can source to make a big batch of very slow-cooked bone broth.

Those fish oil caps you're on are best rubbed into your abdomen. Let your navel drink them in. this also encourages rest. Or switch to a quality cod liver oil liquid. You have youth on your side here. Take full and fair advantage of that potential healing vitality as much as is possible and you'll go a long way to reducing the severity of flare-ups and urgency as well as a greatly improved bounce-back time.
01-26-2015, 04:01 AM   #3
j.reed315
 
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Sounds like you need new medications. What are your iron levels at , that could be why your tired along with not being able to absorb the other nutrients you need. I would do some research on yourself and find out exactly how much they took out and then from that maybe you can get better answers? Best wishes to you! I'm 27 been on almost everything and nothing has worked but I currently take tacrolimus, and pain medication, iron infusions.
01-26-2015, 06:19 AM   #4
cameronp1992
 
Join Date: Jan 2015
Location: durham, United Kingdom
wow thanks for the quick replies!l!! I will head off to shop tonight and see about making this broth, I Used to do something similar when I was younger, it was a chicken broth alongside my liquid diet. would I be able to get all the nutrients I need from this broth as ive never tried it on its own as a diet???

I have asked about my medication but my doctor didnt seem keen to change it. I think the d and fatigue may be down to diet and surgery rather than medication not working because I am not getting any pain which I normally get when my crohns starts up. My iron levels are fine plus im allergic to the iron infusions anyway and the tablets make me ill. sorry to hear about the meds not working, its horrible when you get your hopes up and they dont work. hope the future is better.

thanks for the replies
01-26-2015, 06:43 PM   #5
Nym
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Glad you're willing to give it a shot. Search the web, see for yourself if you can find anything negative about the healing and wellness one can get from a hearty meaty bone broth. The best recipe sources come from our elders - your gran, great aunts, old lady next door etc or seek out circa '50s - '60s 'cooking for baby' books. Magic stuff in those books! Good luck and keep us updated!

Bone Broth: Nutritional Facts & Benefits http://divinehealthfromtheinsideout....acts-benefits/
02-01-2015, 10:39 PM   #6
SmellyMelly
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I have recently started to do the broth too. I make a chicken one with certified organic free range chicken bones. I am allergic to beef so cannot do that one.

Funny thing is, I have found meat to be terrible for my colitis (oh the pain of trying to digest it), and as a result I pretty much have to follow a vegan diet. But the chicken liquid broth is very helpful and nourishing.

Another fantastic way to easily absorb some of the nutrients you need is by vegetable juicing. I particularity find carrot and kale juice to be extremely beneficial for my colitis.

Over time with regular consumption, green juices (kale, spinach, broccoli, parsley) juice will help with the fatigue somewhat too.

Juicing has pretty much allowed me to keep my full time job, which I had previously considered resigning from because of the fatigue I was suffering.

Are you drinking enough plain filtered water daily? As this will help with the fatigue too.

Medications and their side effects, tend to make me even more fatigued. But supplements may help. Perhaps get some tests done with your doctor or naturopath and check your levels of things like: B12, Iron, Zinc, Vitamin D, Magnesium, Vitamin C and so on. Because if you are deficient in these that will add to your fatigue woes.

I suggest you take any supplements in a liquid form only if possible, because these are absorbed better and quicker. If your levels are very low you can get vaccination infusions / shots of things like B12; which should help to perk you up.
02-03-2015, 08:21 AM   #7
WearTheFoxHat
 
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Hello all. I am in search of a miracle drink/liquid diet and I'm hoping someone out there has an answer. My ileum-based CD has been raging out of control for about the past 12-18 months. Imuran, Humira and Entyvio have all failed. I've essentially gone from being "normal" to a couple weeks away, or maybe sooner, from my first resection surgery. At this point solid foods are completely out of the question, dairy is NOT doing the body good and even drinks with sugars seem to cause bloating/ballooning in the abdomen that can last hours (Ensure/Boost). My goal is to maintain weight so I'm actually healthy enough for surgery because the last thing I want is a delay. Cut me open already- I don't even care anymore!

So, what can be consumed that meets all of these parameters?
- liquid (thinner the better)
- high calorie
- no sugar
- no dairy
- some fat would be good
- doesn't taste like tree bark

Is juicing the answer?
02-03-2015, 09:00 AM   #8
Lady Organic
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Elemental 028 extra is popular in the UK. needs a prescription I believe. Its used by GI dr John Hunter who developped the LOFFLEX diet. It is said its best to drink it slowly, sip it throught the day, rather then sending big bulks inside your intestines. I think this would appply even more specifically for you.

http://nutricia.co.uk/e028/managing_crohns_patients

on E028 extra and the LOFFLEX diet as seen in Food Hospital :

https://www.youtube.com/watch?v=FaOQ47Nwceo
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minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
02-05-2015, 08:20 AM   #9
Nym
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So, what can be consumed that meets all of these parameters?
- liquid (thinner the better)
- high calorie
- no sugar
- no dairy
- some fat would be good
- doesn't taste like tree bark

Is juicing the answer?
Bone broth meets all those parameters.

I would start by drinking only alkaline water before commencing any fruit or vege juice.
02-05-2015, 08:49 AM   #10
cameronp1992
 
Join Date: Jan 2015
Location: durham, United Kingdom
Well I have started making bone broths. Luckily I live right next to a giant butchers the size of a supermarket where I can buy bones pretty cheap, found myself buying giant bones in the pet food section for myself lol. Made a lovely lamb bone broth, wasnt as keen on the chicken one but I still drink it. I havent had any diarrhoea with the broth and enjoy the taste, only problem I have is I find it very hard to eatt the right amount of calories a day even with the fat in to maintain or gain weight. I will stick to this diet and see what happens thanks for all the tips.

FoxHat you have just explained exactly what I am going through although I wouldnt wish surgery on yourself just yet. I had a bad flare last year and was refused surgery due to the disease being severe right through the small and large bowel. he said the surgeon would not know where to start and could be dangerous in the state I was in. he said i would need to reduce inflammation with meds and diet before they would even consider it. last year in the flare I hoped for a 2nd operation more than anything just to get rid of the painful inflamed parts but now I would probably refuse surgery for every bit of intestine cut out means less nutrients can be absorbed by your body and more problems later in life.
02-05-2015, 11:51 AM   #11
happy
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Calling DustyKat for you.
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02-05-2015, 03:25 PM   #12
DustyKat
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Hi cameronp1992 and welcome to the forum.

I am sorry to hear of all you are going through and I hope you are soon able to lasting relief.

I think you need to get to root cause of the problem and I would hazard a guess and say that the surgery you had was very likely an ileocecectomy which involves the removal of the terminal ileum, and depending on the length of the resection may also include some adjacent ileum. This type of surgery also results in the removal of the ileo-caecal valve (the area that separates the small and large bowel) and the caecum (a pouch like structure at the commencement of the large bowel). The removal of these two areas, they may also have been affected by disease, but even if they arenít they require removal as this is the only logistical way to anastomose (join) the small and large bowel.

The terminal ileum is the area of the bowel where bile salts are absorbed back into the body. When this doesnít occur they are dumped into the large bowel causing osmotic changes that normally occur to reverse. So in an unaffected person excess water in the large bowel is drawn out into the body making the stool firm by the time it reaches the rectum. However when bile salts are present in large numbers it has the effect of drawing water out of the body and into the bowel resulting in frequent diarrhoea.

The result of this happening when someone has an ileocecotomy varies greatly from person to person and is somewhat dependent on the amount of bowel removed. It is possible to have some natural take up over time and for some normal bowel motions may return even after some years.

I have two children and they have Crohnís and both have had ileocecectomies One more extensive than the other but they both suffer with Bile Salt Malabsorption diarrhoea. There are prescription medications available to help alleviate the problem and they can be very effective for most. The medication is either a powder called Questran Lite or a tablet called Welchol. I see you are already taking welchol and since this isnít working perhaps a switch to the powder may be more beneficial. These are drugs normally used to treat high cholesterol but their action in absorbing bile salts was found to have the spin off effect of being useful for those with bile salt malabsorption diarrhoea as it soaks up the bile salts and in doing so lessens the dumping effect. Another product that has the same action is psyllium husks. These will also absorb excess bile salts and in doing so bulk up the stool and reduce frequency. Both of my kids use psyllium husks with great effect. Psyllium can be bought in the supermarket and is the main ingredient in products such as Metamucil and Benefibre. My daughter uses psyllium capsules at times but she has to take a crazy amount to get the same effect as couple of dessertspoons of loose husks. Hmmm, thinking about it I guess a couple of dessertspoons would be a lot of capsules.

If you do decide to go down this path please read this thread first. It contains useful information and precautions:

http://www.crohnsforum.com/showthread.php?t=13856

Another couple of things to bear in mind:

A liquid diet in the form of enteral nutrition (Modulen type products) will result in loose stools for most people.

I also see you are having B12, do you know what your levels are?

You should also be monitoring the following via bloods every 6-12 months...

Iron Stores
Folate
Vitamin D
Magnesium
Zinc

Öand then supplementing any deficiencies.

If possible obtain copies of all blood results and it would also be useful for you have a copy of your surgery report and the pathology report of the resected bowel.

The one thing that my two have issue with is oils and fats. That is the one thing that will send them bolting to the loo regardless of what measures they take to stem the diarrhoea!

Good luck and welcome aboard.

Dusty. xxx
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02-06-2015, 09:03 AM   #13
cameronp1992
 
Join Date: Jan 2015
Location: durham, United Kingdom
Hello DustyKat thank you for the reply, Extremely Helpful!!
My gi said the same about the bile salt malabsorption, I was on questran first and it didnt help at all and have just switched to welchol 2 weeks ago which seems to work alot better but I still have horrible green like diarrhoea just less frequent. when I last saw my gi he showed me a drawing of the parts that had been cut out and it was mainly in the bottom which I know is the ileum so I think your ileocecectomy guess is right but I will ask for a surgical report to make sure. He told me I have had alot of it taken away and that the parts where the intestines had been joined back together have unfortunately become inflamed again.

I am sorry to hear that both of your chilldren have crohns. I can see that you have researched the disease thoroughly to help them. My grandma had bowel cancer and IBS although we think it was actually IBD for she was never properly tested. I am convinced there is something in human genes or some sort of intolerance causing IBD but thats a whole different thread.

I have never heard of psyllium husks but I will order some tonight and see how it goes. Did your daughter or son have psyllium husks with welchol or did they come off it whilst taking husks?? I Have read through most of the thread you linked and the psyllium husks seem to help crohnies when used which sounds great!

I have had my bloods checked for iron, vit b and folate which the doctor said were ok but have nver had zinc or magnesium checked. I will take your advice and get copies of my blood so I can monitor it myself aswell. I get monthly blood tests so that should be easy enough to monitor.

Oil and fats seem to be okay with me unless I'm in a flare but they say everyone is different with crohns, dairy and fibre are my kryptonite!

Thank you for the information it is much appreciated and a big help!! 😀





d
02-06-2015, 04:09 PM   #14
DustyKat
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My daughter tried Questran but hated it so stopped taking it, she was 14 at the time so I think that played a part too. Neither have taken psyllium with Welchol.

If you have inflammation then go easy with the psyllium as being fibre it may worsen your symptoms.

Be sure and have Vit D tested as well.

I think you need to consider a few other things as well and have them ruled in or out...

If you have had an extensive resection then is a shortened bowel playing a role in this too. Definitely find out exactly how much bowel was resected. Oh I see you mention this in your original post.

How much is flaring adding to the problem?

Has SIBO (Small Intestine Bacterial Overgrowth) been mentioned and tested for?

Have stool tests recently been done for bacteria and parasites?

Dusty. xxx
02-08-2015, 08:43 PM   #15
SmellyMelly
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Is juicing the answer?
Well it is not THE answer........but it is AN answer.

Don't put all your eggs in one basket.

If you were juicing vegetables AND making bone broth, then you would be in a very good position nutrition wise.

I would avoid fruit juice and stick to only vegetable juice. Or maybe try a carrot and apple juice to adjust your taste buds first. Make sure the juice is strained and fibre-free before drinking.

And as Nym says, start by drinking alkaline water and start making the bone broths.

Cooking bone broths by the stove top, are a bit of a nuisance because you have to watch the pot for 12 hours to ensure it does not boil over or boil dry. You also need to scrape any scum off the top. Best to use a slow cooker - put stuff in pot, turn on and forget for the next 12 - 48 hours (I normally go 24 hours cooking time).

If you are flaring really badly then start off with water (not tap) and progress onto the other liquids. You could also try some herbal teas.
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