End of my rope

I suffer from Crohn's . I have been for the past 15 year's. On ever medication you can think of. I am wondering about Remicadee. What can I expect from it?
I am soooooo tired of the run around from my Doctor. I rather be dead right now. All I want to do is sleep and have not been able to eat.
If anyone knows of a meal I can have during this flare up I really would appreciate it. All I have eaten is Tuna , Banana's and yogurt. I am not getting any assistance from my Doctor on this issue.
This is a horrible thing to have. It is like your life has been taken away from you. Sad in Colorado

Sending you big hugs, it sounds like you are going through a really tough time right now.

Things can and will get better. I know a lot of people on here will be able to advise you on diet. There is a support forum on here for Diet, Fitness and Supplements, and another for Remicade, I have no experience, but I'm sure lots of people will pop up soon for you.

Hang in there, hope you are feeling better soon xx

:ghug:

mymusic1027 said:

I suffer from Crohn's . I have been for the past 15 year's. On ever medication you can think of. I am wondering about Remicadee. What can I expect from it?
I am soooooo tired of the run around from my Doctor. I rather be dead right now. All I want to do is sleep and have not been able to eat.
If anyone knows of a meal I can have during this flare up I really would appreciate it. All I have eaten is Tuna , Banana's and yogurt. I am not getting any assistance from my Doctor on this issue.
This is a horrible thing to have. It is like your life has been taken away from you. Sad in Colorado

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Hello. I know sometimes is to much to take, but also I know it gets better. About Remicade, it change life for a lot of people, one of them my daughter. She is doing great. I know about possible side effects, but we take it one day at the time. If you don't feel good about your doc. find another one. Check your vitamin D and B you may be low, and that's why you are so tired and want to sleep. Or may be depression, wish is understandable. Try the Ensure or those drinks with a lot of vitamins on it. Hang in there, don't give up. It will get better. YOU CAN BEAT THIS>

Have you tried steamed/grilled salmon with boiled potatoes!!! if not, welcome to the club. You might try the liquid foods as well. Many of us know exactly how you feel. Its not much to tell you that we relate, but it is how we too feel.

I'm getting b12 shots now (until they're back to normal and then they'll stop them, lol), i'm also restarting my vit d3 liquid and taking magnesium too. I'm at least looking forward to the mental lift that people like us need. They do help, but allow time to let it happen. I also take plenty of omega 3 and potassium as these help with the extreme fatigue and low moods.

Hi mymusic,
Sorry to hear you have hit an all time low. Hang in there....you are never alone. This is just a test, a challenge. A cliche I know but what does not kill you will make you stronger ...as a person inside ultimately, inshallah. I believe sick people are surrounded by angels by God's leave (Allahu a'lam). I hope I have not offended anyone here, as that is not my intention, just my personal belief.

Have you tried slippery elm and the herb marshmallow? These both have mucilaginous properties that might help towards soothing your gut by providing some form of coating to try and stop what ever is attacking your gut from attacking. But you would have to talk to your Dr if you are on meds to be sure there will be no drug-herb interactions.

You need some vitamins I think, particularly the anti-stress B vitamins. Royal Jelly might help here....as long as you don't have a bee product allergy. There are some interesting articles around the Net on Royal Jelly helping with adrenal insufficiency. I think many ill people might fall into this scenario to an extent.....adrenal insufficiency. There is a neat short article by the American Apitherapy Society on Royal Jelly for health and well-being. Royal |Jelly is supposed to be rich in B vitamins.

You can feed your body through your skin. You take absorb vitamins and other nutrients that way. Olive oil is very nourishing for the skin. You can absorb omega 3 that way if you add a little flax seed oil too.

Best wishes.
juljul xx

I'm still undiagnosed and new to it but I'm certain that I have Crohn's. I usually eat frozen chopped spinach (boiled and baked in the oven), pureed carrots (cooked on the stove for at least 30 minutes), skinless baked potatoes, plantains (cooked in the oven), avocadoes, and for spices; turmeric and ginger. I've used potato flour, tapioca flour, and arrowroot starch.

Some foods may work for you and others may not, I was eating peanut butter which I read was okay and at first it went well but after a few weeks I'd start to feel sick after eating it. I read that tahini would be okay too but that didn't work for me either.

I was tired a lot but then I starting taking vitamins and that helped and protein powder helped me gain weight. I also use probiotics, I started with 10 billion daily but I found them ineffective so after slowly and gradually increasing my intake, I found some relief after taking 100 billion daily. But you should consult a doctor in regards to vitamins, protein powder, and probiotics just to make sure you are taking the right dosages.

Usually I try to eat things with ingredients that are not a mystery so I avoid; carrageenan, natural and artificial flavors, red 40, etc. If I can't picture an ingredient in my head then it's not worth eating.

Stay positive, it will help. Feelings are deceiving because there is goodness, it just needs to be recognized. Feel free to pm me if you want any recipes, one thing I've noticed since getting sick is that I've become a better cook because my food tastes a lot better than it did when I was healthy.

You can try some rice gruel. Well cooked and soft, you maybe fell better.
When I had flare-ups, I always turned to it.
Hope it can help you .

Hey I know how you feel, I had that level of flareup for 2 months and it was a living nightmare. That last thing I wanted to do was eat but when I did it was something easy to eat like what you are eating. I would just eat anything you can particularly stuff that has mostly soluble fiber or no fiber. I would drink juices high in vitamins and minerals.

I was pressured by the doc to eat as much as I could but as I found out, the only thing eating 3500 calories compared to 1000 did was give me searing pain. Same weight loss @ 1/2 lb a day. Felt like there was a cinderblock attached to my chest and stomach.

Youll probably do well with Remicade..what are you taking right now? Azathioprine can take up to 3 months to work right.

I am hoping you are now feeling better. I can absolutely identify. Last November I was to the point where I could eat nothing and in so much pain I honestly wanted to die. However, I somehow fell on a blog on the net about a women in Costa Rica who had started the SCD/Paleo Diet. I began to research this and decided there might be something to this. Everything that i read made sense to me. All of the foods that I had previously thought to be good for me to eat, were actually causing me great pain and other discomforts (I have Crohn's Disease of the ileum). But I would also have alot of pain throughout my bowels and stomach. So I decided I had nothing else to lose. I drug myself to the store and bought a Free Range whole chicken and threw it in a pot and began to make a broth, which I had never done before. I followed the SCD cleansing with the broth and then soup with the chicken, broccoli, cauliflower and carrots for 3 days. I immediately began to feel better. I ate the bone marrow from the bones as suggested too. On the fourth day I was able to start adding in Grassfed beef and organic eggs and I felt even better. I did not do the fermented yogurt or any of the fermented things, as I can not tolerate yogurt or anything with vinegar. However, I still found great sucess with this diet. I do have to modify some things, such as coconut flour, it does make me sick. I can have almond flour in moderation. I did also find that I have to eat pistachio nuts daily as a snack, because I did lose quite a bit a of weight in a very short amount of time, and I wasn't over weight to begin with. The nuts, even though some say are taboo, actually work for me and are quite healthy. I have also learned that nightshades are a no no, they make me terribly ill. I do and can eat Sweet Potatoes though, no skin and either boiled or baked. I eat lots and lots of baked or boiled squash. I also order alot of my meat from US Wellness Meats because they have sugar free bacon and sausages, etc., all grassfed and MSG, nitrate and sulfite free. It is a bit expensive, but worth it! I have not been able to eat bacon in years and now I can and it is AWESOME!!!

Anyway, I just thought I might share with you my experience with Paleo. It has been 4 months now and even though sometimes I think about all of the junk I used to eat, feeling good, and living life without pain and trips to the bathroom make it all worth while. I actually have a positive outlook on my future and that is a wonderful thing. There are alot of good Paleo cookbooks too, which are very helpful. The Gluten-Free Almond Flour Cookbook is really good, as are The Primal Blueprint books. And then of course various recipes online.

Cooking everything from scratch may seem overwhelming at first, but you will get the hang of it. And as you begin to feel better, cooking won't seem such a chore. And the food tastes GREAT! I never, ever imagined eating buffalo and lamb, but YUM!

I hope maybe some of this helps. 15 years is a long battle. But hang in there, because there is a diet that will work for you.

Good luck and I truely wish you a speedy recovery.