I have been in a flare for over a week with diarrhea and blood, and sweating in the early mornings (when bowels are on the move). I know everybody's food tolerances are different but is there anything anybody can recommend regarding food. I am trying to stick to the low res diet but everything seems to hurt at the moment. For example, if you eat pasta, which I can, then how would you cook it? With a cheese sauce perhaps?
I'm also losing too much weight, too quickly.
I've had Crohn's Disease for 14 years and been on steroids for just about as long. This is the first time I have had to put them up to 20mg in about 18 months. I really don't want to end up in hospital again. Usually when I end up in hospital and don't have to worry about the food issue!
I just joined the forum today and already found it so helpful with other Crohn's issues.
Hi, I'm on Prednisolone and Pentasa and have been for 14 years now, although mostly very low doses on and off for the last couple of years. Maybe you could change your steroids?
Sounds horrible and I'm thinking maybe you should discuss taking a liquid diet with your doctor. Modulen IBD is excellent and will give you all the nutrients you need and give you and your bowel a rest. It's not easy but the results speak for themselves. It has been a life saver for me over the last 20 years.
Good luck and hope you get a reprieve from it all soon
That's a good idea, it would give my bowels a rest, which I feel is what I need right now. I'll speak to my doctor tomorrow and see what they can offer me! Cheers
Hi patricia, as you said all are different but following my recent flare and being told my crohns is now steroids reliant asked about alternative therapy as weight gain extreme following last 12 month course. That's why now on methotrexate and although is said it's toxic side effects not much different from steroids if used long term. Diet as you asked both myself and older sister suffer and do not eat anything with skin or pips or seeds and definitely not nuts unless through nutri bullet.
Hi, so sorry to hear your going through what we all hate. Ive been going through mine since May - however as for diet ive been eating things like mash potatoes, toast with jam, noodles and chicken cup soup (good to give your guts a rest) all very bland foods (apart from the soup) and very liquidy. I cant tolerate milk at the moment so giving that a miss, but taking small bites and chewing very well!
Im now on Infliximab which still haven't stopped my flare but then ive only had 2 infusions, im surprised your only on 20mg steriods, i used to have to start with 40mg and taper down. I just cant tolerate them anymore.
Do you use any digestive enzyme? If you do what brand? Anyone here using Herbal digestive and what brand, One of the person told me the name but I forget to write down on my notebook I use BEANO but it doesnt really work and I am worrying about the chemical they use in the tablet. I want to change to Herbal instead.
No I haven't used any before but it's something I will look into. Feel worse today, mostly no energy and shaky in the mornings probably low blood sugar. Waiting for home visit from doctor.
Well off work today myself. Methotrexate making me vomit so been in contact with consultant been told to stop.. New treatment plan needed. Know how it can get you down Patricia let's hope doc comes through for you...
the he safest food to eat I find is white fish. I agree with pasta what sauce is debatable. Hard cheese is not recommended but a soft cheese is o.k. I have bought the packet type that had a cheese sauce with no ill effect.I find I can eat curry which might seem strange so curry with rice is o.k. Some of my meals might not pass an experts test but I eat what agrees with my tum. I also hate cooking.
i have thought it a good idea if we on the forum got together and made a two week menu.
I hope they work out a good treatment plan for you soon, it's such a horrible desease.
Doc's just gone. He said it's probably low blood sugar because I'm not eating properly. He wrote me a prescription for some more Ensure juice drinks, not good with the milk ones, and took blood tests. He also checked my pulse, temperature and blood pressure and all were fine. I'll get the blood results by end of week.
Hi Julie & Patrica. i think methotrexate is an immunosuppressant isn't it? there is another immunosuppressant drug they definately use in ulcerative colitis & i am not 100% sure if they use for crohns - but it may be worth you both looking into - perhaps the crohns & colitis helpline might be able to tell you? it's called 6mercaptopurine & is supposed to be more tolerable/less side effects than the other immunosuppressants. In Patricia's case - might be worth asking your consultant about as a long term alternative treatment to prednisolone. Hope this info helps ladies & i wish you both get well soon. xxx
Thanks for that looloo. My consultant did mention Humira, which I am really not keen on - too many scary stories! Still, it might come to that yet, but I'll certainly have a talk with him about other options.
That's sounds like a plan. At the moment I need to figure out just what I can eat because it's the worst flare I've had since the beginning. But a new discussion on a menu and/or recipes would interest a lot of people here.
Strange as it may sound, a few weeks ago I decided to start my own eating plan by clearing out my bowels with banana smoothies in the morning and lunch time then steamed vegetables for my my main meal. After a week the pain and sometimes bleeding had stopped but I still had no energy so I introduced blended veg soup for lunch and either fish (salmon or river cobbler) or chicken breast with my steamed veges at night. After the second week I suddenly felt like I had some energy so I scrubbed all the tiles in the kitchen and was utterly knackered and sore the next day!
Who would believe it - fruit and veg! The steroids weren't doing anything so I had to do something drastic, I think they're losing their potency with me, I must be becoming too used to them. I am determined to get off them this time.
Yes, in case anybody is wondering, I did read the David Klein book (I used to have it a few years ago) on scribd but can't follow it properly because it's too restrictive. I've had a couple of set backs over the last three weeks - nut butters, cheese and milk are off the menu as is too much bread. In fact, I try to do gluten free as much as possible. I'm even trying to make my own gluten free sourdough bread without a lot of success at the moment! Feel so much better now though.
So, everything the doc and consultant say about food, I will ignore. I am determined not to take any further hard core drugs. I don't think my body could handle them now.
Good for you.....sometimes you have to take back your power and trust your instinct.
Steroids are a great life saver but rubbish long term. A healthy balanced diet is what everyone needs. Just takes time to research and figure out what's right for you.
if you ever do the liquid diet again insist on MODULEN IBD. It's diary/gluten free, you mix it yourself so at least gives a sense of preparing food, it tastes infinitely better than those cartons and it has a naturally occurring anti-inflammatory component too.
Hi, I have been taking 500mg of pentasa 2 times a day. I take 3 in the morning and 3 at night. They have been working pretty well. What I find is best in aiding my remission is to try to eat no dairy, reduce acidic foods (orange, grapfruit, juice, pomergrant, lemon, ect.). I try to eat foods that are easy to digest like baked potatoes/sweat potatoes/yam (without skin), vegtibles, non acidic fruit like bananas. Again i stay away from meats escpecailly red those are hard to digest.