I need a lot of help.

[Dereksmagic]

Hi, I have a lot of questions and I am hoping I can get some help. Im pretty much alone, confused and dont know what to do.

I need help with every aspect of this disease. Diet, Supplements, Workouts etc..

I am going to just kinda type as much as I can about the stage that I am at and how im feeling and what Im doing as of now... And my goal is, is to be able to be pointed in the right direction as far as what diets I should try and fallow along with supplements, should I exurcise, etc...

I was in the hospital back in nov/dec and when I got out, I wrote a post about my entire experience being diagnosed with Crohns. So this post is going to pretty much be an update to that post, You can read that here:

http://www.crohnsforum.com/showthread.php?p=558410&posted=1#post558410


So for the last few months I have been out of work, and laying in bed, my stomach always cramps up, and trying to use the restroom hurts a lot still. Right now im taking about 5-7 10/325 percocets a day, and I need to go see a pain specialist because Im still in pain. I have built up so much of a tolerance that I need to take like 3 at a time to even feel an effect and get relief, so hopefully the pain specialist can help me when I see them.

Im am not in remission, so I am still considered "flaired" right? If so, I dont know what I should be eating, My doctor says that I can eat ANYTHING i want, that diet is not affecting me right now, only to stay away from dairy. - It seems his only concern right now is monitoring my inflammation markers via blood tests once a month.

My last blood test showed my markers to be higher, so the doctor had me do a "booster" of Humira, which included 2 pens for my last injection, and then 1 injection a week for the next 8 weeks (my regular schedule is 1 shot every other week)

As far as how Im feeling, I wake up in the morning, and I feel like crap, My stomach hurts, and I always have to go though my morning poop sessions, I wake up about 9am, take all my meds, and hit the toilet about 4 times in the first couple hours of waking, It hurts every time I go, even to pass gas, sometimes to the point where I want to cry. Once that passes, usually by the afternoon, I feel pretty good. And by that time I have taken a couple painkillers, all my meds (balasalazide, prednisone, anit-cramping meds, iron supplement, etc..

I dont do well when I leave the house, for the majority of the last few months, I have pretty much been stuck inside, and in bed, I have no energy, Feel bad, depressed, weak, tired... but I have been trying to motiveate myself to feel better, I started like whiting my teeth, got some new clothes that fit, cut and dyed my hair, just tried to kinda give myself an overhaul to try and feel better mentally first, then I started trying to get out of the house more.

I am a magician, and I need to get back to the point where I can start getting out of the house and night so I can perform, and socialize and make contact to start making some money again, and pulling gigs.

So I have been trying to force myself to run more errands during the day and see how I do, Run to costco, pick up my scripts, etc.. small trips here and there, But I can only last a few hours outside of the house, and any type of physical movement (like trying on shirts that fit cus I lost so much weight) left me dripping sweat and feeling completely fatigued after 20 min for changing in the fitting rooms.

I feel like I want to pass out sometimes, and there are days that my body feels so weak and tied, I cant even lift myself out of bed.

.............................................................................................................

As far as diet, I started by eating only White carbs, beacuse thats what I was told is best for when I am flaired. (white rice, Ensures, Eggs, no veggies, no wheat, no dairy, no fruit, no seeds, no nuts, nothing hard to digest.)
But my Doctor keeps telling me I can eat whatever I want, So I started eating whatever, pizza, chineese food, etc... some things im ok with.. like sushi, Im good with sushi, but I had a hot dog today, and I have been on the toilet all night. so I dunno.

I want to find a diet, that is going to help get me too remission (or at least help keep my pain and cramping down, as well as provide me with all the nutrients I need so I dont feel so run down and tired all the time.)

I feel like I should be eating veggies, and fruits, and getting as much vitimins in, but I thought Im not supose to have any of that while flaired?

Im so damn confused.

Anyway, its very hard to get everything out while typing. So if there are any specific questions people need me to answer, or topics I need to talk about please ask me on this thread.

Im not the best at expressing myself via typing, so Ill probably shoot a youtube video of my talking tomorrow and I will post up a link on this thread below, But until then, whoever reads this, and has some suggestions of what I should discuss or talk about, let me know and I will be sure to add it into the video.

I would really love to get some good advice and start trying to get a handle of this hellish of an experience under control.

Again, I apologies for grammer, and clarity issues of this post. Im new to all this.

Thanks

-Derek

 

[Beach]

Hi Derek - welcome back to the form! Ah, you did a good job I feel on expressing your problems and difficulties. No problems, other than not good to read about the difficulties you are experiencing. Hope you find relief soon so you can enjoy life once again, and get back to performing.

With physicians and diet, it seems different doctors have different opinions on whether foods effect our IBD conditions, or health of our bowels overall. You could see a different doctor and receive different information on what is safe and what is not to eat. I think it comes down to what works best for you. For some people diet and supplements help greatly with their IBD conditions. For others, diet doesn't seem to improve their situation.

To read an example of what doctors can be taught about bowel health, saw this example the other day of what this doctor was taught while in medical school. It's on the ideal stool to avoid colon cancer. About seems most of us IBD'er have little to worry about if this is the case.

"Constipation can cause colon cancer? Probably not"

http://www.drbriffa.com/2013/03/28/constipation-can-cause-colon-cancer-probably-not/

Since you are indoors most of the time it probably would be helpful to test your vitamin D levels. It is likely you are low and will want to supplement. Vitamin D seems to help many with improving energy levels, and their IBD condition. This thread should be helpful on learning more about vitamin D, and others opinions of supplementing with.

"Vitamin D and Crohn's Disease"

http://www.crohnsforum.com/showthread.php?t=23826

Other supplements that can help are magnesium, vitamin K2, probiotics, some kelp, etc.

As for your diet, since you have been experimenting extensively it appears, it might be best to begin a food diary. I know for me I've learned with a diary that eggs and chicken are a problem animal food for me to eat.

There are diets with instructions to follow for iBD conditions that many follow. The more popular diets are the SCD, GAPs, and Paleo. You can learn more about these ways of eating at:

"Diets and Supplements for Crohn's Disease and other IBD"

http://www.crohnsforum.com/showthread.php?t=32036

The GAPs diet is similar to the SCD but more detailed. A good sight for information on GAPs can be seen at:

http://gapsdiet.com/

Others that follow these diets, and can offer support can be seen at:

http://www.crohnsforum.com/forumdisplay.php?f=288

Good luck and hope you have a chance to enjoy some of the Easter weekend!

 

[Beach bum]

Hi Derek I can see that you are feeling really worn down by all this at the moment, I felt very like that myself last year so know a bit about where you are coming from.

It is good that you are trying to get out and about, I find I feel much better when I keep as active as possible. I started by walking short distances when I was ill and have slowly built up to jogging ect now that I am better.

I was also put on the low fiber or low residue diet you describe and actually I think when you are in a flair it is a good idea to try to stick to it. By reducing the amount of digesting your body has to do , you are giving it a rest and a chance to heal.
But like you I was concerned about the lack of vitamins and goodness in that diet so supplemented my self with multi vits and iron, which helped.
Then one day I luckily stumbled on an article about juicing - I think it is the best thing that could have happened. Now I drink a juice every morning for breakfast and get all the fruit and veg goodness I need in a glass without any of the fibre.
As I have got better I have been able to reintroduce well cooked veg and things like peeled apples as well.

I am not saying that juicing has cured me, I am on medicines too, but I really feel it has given my body the tools and the chance to heal well - my inflammation markers are now back to normal.

There is a special juicing section in the forum that you might want to check out , and also lots of advice, recipes and inspiration can be found here :

http://www.juicemaster.com/juice-therapy/why-juice

Good luck and I really hope you will see things turn around soon.

 

[Sarah50]

Hi Derek,

So sorry you're going through a difficult time ... hang in there, you will get better!

I agree with Beach Bum about the low residue diet and juicing! I was going to suggest the same.

My doctor put me on a low residue diet and meds and within 6 weeks of that combo, all of my symptoms went away! I was in a lot of pain daily along with extreme fatigue, night sweats, lack of appetite, etc. So I was *thrilled* when all of those symptoms went away! I really believe that low residue diet was key as some days were worse, particularly when I was eating high fiber food.

A low fiber diet makes complete sense to me with this disease because that diet is very easy on digestion which is what we need to feel better. Since you can only have very few fruits and no raw veggies on the low residue diet, juicing makes sense as you can get all those nutrients without the pain and fiber. I haven't started juicing yet but will. I'm going to start looking for an 'easy-to-use', not a huge contraption-type juicer.

After having no problems for a few months, I have added a few raw veggies to make my favorite - salads - and so far, no problems (butterleaf lettuce, english cucumbers with no skin and they don't have seeds, mushrooms, blanched tomatoes (to remove the skin) and salad dressing that I love). But, since I have a stricture - I'm going to stick pretty much with the low residue diet and add juicing. I want to stay in, what seems like remission, and avoid surgery as much as I can!

Another thought - you can buy lactose-free milk to make protein drinks, milk shakes, use it with macaroni and cheese, etc since I believe you said you're lactose-intolerant. I switched to it, just in case and do well with it.

If you have any questions as to what you can or cannot eat on a low residue diet, just ask. I went to a dietitian and she helped me figure out the food I was still eating that was giving me pain - and once I stopped eating those foods, the pain went away.


Good luck! You're in the right place to get ideas, help and support with a bunch of nice people here! :rosette1:

 

[amrycrohns]

The more I lay around the worst my symptoms are, do what you can as you can to get out of bed. If you can walk 10 minutes do that, if you can run 30 minutes do that. I would suggest staying as active as possible. Get dumbbells, resistant straps or anything just get active.
Diet I just avoid things that cause me issues personally and eat everything else, If you mill through these forums you will see some people have no issues with certain foods and others it is thier nightmare food.

 

[acc929]

Oh man, that sounds really rough . I was at that point a little while ago. You are getting medical attention it sounds like so I guess you don't need any warnings about the pain meds (until 10 days ago I was relying too much on them and not enough on meds to control my actual illness, and I ended up with a perf and an abscess).

Ever since then I've been on a just-barely-full-liquid diet. If you should stay away from dairy this might be really good in terms of going on bowel rest for a bit to let things chill out. It's not a permanent solution but it might get you back on track or something. I've been drinking lots of boost (it's lactose free), v8 (for vitamins), strained soups (the broth is heartier than consommés), almond milk and matcha lattés, hot chocolate etc. I spike the broth with olive oil and the hot drinks/tea with coconut oil so that I can get some good old lauric acid and anti-inflammatory ingredients and I find the coconut oil especially helps me feel full. Doing this is also good for keeping calories up. Try to get lots of protein for healing (only reason I'm drinking Boost, normally the ingredient list would horrify me). Honestly, I haven't felt this pain-free in over a month, and that was when I was taking 40mg pred/day. Plus I get the very non-medical impression that the oils moisturize my unhappy tubes or something, haha. My undiagnosed but very sick friend has gone on fluids too and she feels much better - she is including avocado in her smoothies and it's working for her, but she isn't crohn's diagnosed (I don't want to be a downer so I don't say anything but it wouldn't surprise me if she will be soon). You might slowly begin doing smoothies when you start feeling better. Good luck This is also a good idea if you're on lots of pain meds because it'll keep you hydrated! The constipation I got from pain meds exacerbated the pain, I doubt it's doing much for you either! xx

 

[ijl]

Derek,
I understand exactly what you are going through. been there !!! and it really is very depressing and not fun.
in terms of diet, the book you need to read is called "Breaking the Vicious Cycle." I think it will help you a lot.
another website to look at is www.crohnsboy.com - it's the website of a young man that cured, yes cured himself from Crohns and is perfectly healthy now. I was amazed and he has personally spoken with me and helped me out. we still keep in touch.