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Crohn's Disease Forum » General IBD Discussion » Really need some advice 😓


11-15-2017, 07:30 PM   #1
Irene3
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Really need some advice 😓

Hello all. I'm a 34y old crohns sufferer. Been on all the pharmaceuticals, have never been in full remission. I deal with it as best I can. When Iv started work/uni...anything, it stops me in my tracks. EVERY TIME!!! I'm a single parent, living in Australia. Iv recently started a bit of physical work, as I'm desperate to pay my daughters school fees (still owe this year and in a few months, starting a new school year in Jan, I'll need another thousand and uniforms) as well as a decent xmas for her, as well as replacing her furniture which Iv promised for years. I can't save on disability payments. We JUST get by. I don't have a problem with working, but my body never keeps up. In only 2 weeks, it's already constant nausea, to the point I'm forcing food down just to have some nutrition as constant d alone, let alone physical activity....well I know my body needs it. But I'm constantly bloated not eating at work, taking questran Just to stop myself needing the loo at work. After work I try to eat, but it's like my body gets worn down in no time, to a point that I probably should be bed ridden. Not that I am. But I know my body is struggling, but what do I do?
I guess I'm just hoping some of you fellow crohnies have tips to increase appetite...reduce nausea. I'm just at my wits end with this bloody disease!!! Any advice would be greatly appreciated. I'm living on cigarettes and coffee. (Yes I know smoking isn't good, but when money is a constant stress, and the fact that I want to provide everything for my child, and this just keeps happening. And coffee... I don't drink it on work days, but the rest of the time, at least it's a bit of sugar and milk. And at least I can stomach it.)
Ps. Yes Iv tried lactose free, gluten free, you name it. Diet isn't the answer. That much I know from endless personal experience. Please help. xoxo
11-15-2017, 09:47 PM   #2
ronroush7
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Hi. Have you tried Boost Complete? Are you seeing a gastroentologist? He might be able to prescribe something for the nausea
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-16-2017, 11:07 PM   #3
Lady Organic
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I'd suggest the same thing, nutritional drinks. These are easier to digest and can provide lots of calories. Hoping you find some relief soon
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
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).
11-17-2017, 08:49 PM   #4
Irene3
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Hello, no I haven't. I was on ensure (not sure if it's the same in the US) years ago. Also sustagen when I wasn't eating. Iv been trying not to have milky things before work, as that would be a disaster. But straight after work I could I guess.
I do see a GI, for over a decade now. But only to get my Humira scripts now. And spuretic colonoscopy ect. But my regular doctor I see fortnightly, to get my shots and any other scripts ect. I will mention it to him. Thank you for the suggestions. Iv dropped a lot of weight (for the percentage of my body) already, and there's not too much more to loose. So I'm beginning to worry. 😓
11-18-2017, 05:59 AM   #5
my little penguin
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The GI can prescribe semi elemental or elemental formula
These are very broken down and much easier ok your gut than day milk
They have milk protein in semi elemental but it's not Whole

Semi elemental peptide based
https://abbottnutrition.com/vital-1_5-cal

Elemental-no intact proteins

http://www.nutriciamedical.com.au/ad...8-extra-liquid



Ds drinks neocate jr (elemental formula plus food)
If we are trying to heal his gut
It's all formula and no food (exclusive enteral nutrition) for 6-8 weeks
Your GI should have samples so you can try what works best for you

Good luck

Ds no longer tolerates polymeric Whole protein formulas such as boost or ensure
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11-18-2017, 07:39 PM   #6
Irene3
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Join Date: Mar 2012
Location: Australia

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The GI can prescribe semi elemental or elemental formula
These are very broken down and much easier ok your gut than day milk
They have milk protein in semi elemental but it's not Whole

Semi elemental peptide based
https://abbottnutrition.com/vital-1_5-cal

Elemental-no intact proteins

http://www.nutriciamedical.com.au/ad...8-extra-liquid



Ds drinks neocate jr (elemental formula plus food)
If we are trying to heal his gut
It's all formula and no food (exclusive enteral nutrition) for 6-8 weeks
Your GI should have samples so you can try what works best for you

Good luck

Ds no longer tolerates polymeric Whole protein formulas such as boost or ensure

Wow ok, thank you! There's a lot more available now then back when I was on a liquid diet. I will ask. I feel like I'm wasting away. And fruit is all I can tolerate in my mouth when I'm unwell. Most things make me want to gag. Especially after so many mouthfuls (not a lot at all). It's scary. 🙁
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