Crohns - Terminal Ileum

[Beccamon]

Hi everyone

I have recently been diagnosed with Crohns Disease (in the terminal ileum) after suffering for 5 years not knowing what was wrong with me. I was diagnosed following blood tests, colonoscopy and an MRI scan and am taking azathioprine as medication.

I am struggling with the pain and I can't seem to pinpoint the foods that are affecting me. I am in pain everyday. When I asked the GP about diet he told me to continue living my life, eating what I want???? Surely I can't do that!

At the moment I am allowing myself fish and rice, soya yoghurts, water, one cup of tea a day, but I am still in constant pain.

I just don't know what to do and would appreciate any help/advice you guys can give me. Fed up with the pain, my appetite is disappearing because I just associate food with pain.

Thanks guys
Becs

 

[vickyhunter]

I know how you feel, I'm losing weight even on steroids because I associate food with pain so I subconsciously don't want to eat a lot. I've been veggie for 7 years and I eat a lot of eggs, no dairy, well cooked veg and soy products, I recently got a book called eat well, feel well which is recipes which comply to the specific carbohydrate diet, but it's very very strict - don't think I could follow it unless I was out of other options, but some of the suggestions are quite good and it has lists of foods to avoid so it might be worth having a look

Have you tried a pain medication like co-codemol? I take that on the days I get a lot of pain and it usually helps a bit.

How long have you been on aza?

xxxxx

 

[scottmyster]

HI Becs, welcome to the forum, In regards to your diet i would stick to liquids for a while like boost or ensure and any nutritional drinks. or a low residue diet. The GP shouldn't of told you to eat anything you want because many foods out there can sabbatoge your system. especially fried foods and greens and anything high in fibre.Maybe the medication that your taking is not working for you. it could be a number of factors. If i were you i would keep a diary or journal of some sort and see what foods trigger the pain and the ones that don't and stick to the ones that don't. i wouldn't eat any red meats because it's hard to digest. i would stick to chicken boiled, boiled eggs, or anything that has protein in it boil it first so you can take the fat out of it. Try some mashed potato or sweet potato anything mild on the stomach. i would stay away from fruit and veggies for awhile.These are some suggestions. i am sure other forum members will have some other ideas for you, but this a start. best wishes.

 

[Beccamon]

Hi Vicky

I have only been on aza for past 2 weeks, and am due for a blood test on Saturday to check the liver enzyme levels to ensure I can continue taking it. How long did it take for you to notice a difference or relief from your symptoms when you began taking it?

I can't take co-codemol, it doesn't agree with me!

I have taken Pentasa but it didn't help me at all, so the GP prescribed me with Aza. Pretty scary drug isn't it....

What other activities do you take to help ease the pain of a flare up? I have noticed if I place dorect heat onto my belly when I get cramps helps alleviate them slightly.

xx

 

[Beccamon]

Hi Scott

Thanks for that - really appreciate your advice on the diet. I haven't ate red meat for a few years now and will definitely be staying away from the fruit and veg for a while.

If I was to start a low residue diet and eat mainly boiled chicken, boiled eggs, mashed potato, what supplements to you advise I should take, if any?

I'm new to all this, so I apologise for the basic questions!!

 

[vickyhunter]

Yeah heat helps me a lot, and I find that just soothing my stomach by rubbing my hands on my abdomen helps (weird I know haha).

and I was on 1,250mg of pentasa when I got put on aza and I was on it for about 3 months until I started to feel really really well and then I got taken off pentasa and I was in remission for 6 years on aza. It usually does take a few months for aza to kick in. I don't miss the weekly blood tests at the beginning though! Mine are every 3 months now.
You will hopefully start to notice a difference in yourself in the next month or so if aza works

xxxxxx

 

[xJillx]

Hi Becs and welcome! As Vicky said, Aza can take a few months to truly take effect. So, I hope you will start to see an improvement over the next few weeks. But in the mean time, to help ease the pain, I would stick to a low-res diet. As you mentioned, chicken, rice, eggs, and mashed potatoes are all good options. I also eat toast, yogurt, salmon, crackers, and oatmeal when I am not doing too well.

I sure hope you start to feel better soon! Hang in there!

 

[scottmyster]

HI Beccamon, i would try supplements like B100complex vitamin, centrum vitamin, Omega-3 fish oils supplements, Omeg-3 fish oils smoothes the intestinal track and eases inflammation.I would also try a Probotic supplement you can get it in pill form at Your local Walmart or GNC store.This also helps in inflammation of the digestive track. I wouldn't tell you this if i wasn't taking it, but, i am taking all of them and it helps my stomach. Plus you will be getting all your nutritional vitamins, i would also advise you to have a Ensure nutritional drink to keep your energy levels up. best wishes.