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Crohn's Disease
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Posted 6/22/2009 3:42 PM (GMT 0)
I do not want to take my medication anymore.  I am tired of it.  I most of the time feel worse on it.  I am tired of having bald spots on my head. I have such a bad constant cough.  My bones hurting so much that moving is not an option that I want to do and pass out from the pain of moving if I push it too hard like walking more then a half mile without resting.   My skin (and other body tissues) varing between extrodinary dry and having H.S. (which scars my skin with what looks like old acne scars, after they leak puss and blood for a couple weeks and just generally hurt).  So tired I sleep most hours out of the day.

I seriously wonder if my docs are missing something.  Was I misdiagonsied or they have not caught something else that is wrong?  Granted I am on a lot of suppliments (b-12,folic, d) and stuff for malnutrion. 

My GI is really not understanding the quality of life issues I am having. 

Posted 6/22/2009 3:50 PM (GMT 0)
Navy hon, I feel so bad for you.................... I know you are dealing with the VA right? But can you go to another doc for a second opinion or maybe just a fresh set of eyes?

L.
Posted 6/22/2009 4:01 PM (GMT 0)
I feel for you Navy, are you interested in trying the natural route for a bit? At this point what have you got to lose? Let me know and I can share what I use if you're interested.

:)
Posted 6/22/2009 4:12 PM (GMT 0)
BIG HUGS Navy!! I do think that you really need to see another doc for a second opinion. No one should have to suffer as badly as you have been. I have never seen someone suffer so badly as you have without any help from anything. Can you go somewhere else and get another opinion? I wish I had a magic pill or something to make you feel better, but since I can't take my BIG HUGS and prayers for healing for you.

Hugs
Gail *Nanners*
Posted 6/22/2009 5:22 PM (GMT 0)
I am going to use my mothers life insurance money to go to mayo. I am just done, not that I am expecting any miracles but it would be nice to know if there are other things going wrong. Yes, pb4 I will welcome about anything. I have been doing the bee probliss for a couple years now, but what else do you take again?
Thank you all!
Posted 6/22/2009 5:33 PM (GMT 0)
Navy, if something else if going on I bet the mayo will find it. Good luck.
Posted 6/22/2009 5:42 PM (GMT 0)
I use 500mg of bee propolis one pill 2X/day, omegas 3-6-9 one pill 2X/day, probiotics (primadophilus Reuteri made by natures way) one/day, chamomile tea first thing every morning, vitamins A, C-calcium ascorbate (easy on the gut, known to repair damaged cells in the intestines), avoid all processed foods/beverages, table sugar/artificial sweetners, fast-foods, caffeine, animal fats and exercise regularly. Use either Stevia or honey as a sweetner when needed.

Good luck, feel better soon :)
Posted 6/22/2009 8:14 PM (GMT 0)
Navy,
I also got to that stage, I had no balance and almost fell head first through my bedroom window one morning , I binned the lot I was so angry at all the nasty side effects that when I mentioned to the various dr's didn't really want to know. I'm guessing you need to do some kind of detox and try the more natural route.
Good luck,
Tess
Posted 6/22/2009 8:37 PM (GMT 0)
Navy, go!!! I have spent out.Somehow I manage to get by.Friends, family,.... Duke was the closest to me, however, mayo was my next step. I have jewlery on consignment in the jewlerystore,(thank God for former boyfriends)!! If nothing else, you will be getting the best!! You and everyone deserve that. This country owes me nothing, however I truely believe the medical field does.Do it!!!!
Posted 6/22/2009 10:40 PM (GMT 0)
Navy, I'm really sorry you're feeling this way, and don't blame you for wanting to ditch your meds for a while. It does sound as if you're very ill, and needing more help than your own doctor is giving.

Have you ever kept a daily diary of your symptoms and limitations, in order to give your doctor a better indication of how you're feeling? One of the fibro mods posted a very good pain journal the other day; that, along with a symptoms diary and a log detailing your limitations might really convince them that you need more help... and if they don't listen, then I think they are getting dangerously close to being negligent.

I am so, so sorry, Navy. You deserve better than this.

Ivy.
Posted 6/22/2009 11:37 PM (GMT 0)
I'm doing the jewish diet thing. I think it's like the SCAD, but they allow certain carbs, and disallow certain meats. I'll keep everyone posted on progress. I've been on a liquid diet today, though it's not really pure liquid. It's a raw egg protien shake, with coconut milk, rice milk, i add fruit and local honey (for that sweet tooth). I'm going to start doing this probiotic and stuff.

I think that there is some merit to these all natural approaches. I don't think there is a one and only, I think that what these diets do (the correct ones) is a) limit the amount of toxins in the body, an easy way to trigger the immune system and b) it just simplifies the diet in general. The amount of diversity in our food I think is sometimes a detriment, and these diets that are restirctive just simply it. I really believe that if you woke up every day eating the same thing day to day, making sure to have no toxins and get all your nutrients I wouldn't have crohns. It's tough to simplify your diet. I feel like I'm forced into it right now.

any thoughts?
Posted 6/23/2009 4:10 AM (GMT 0)
Navy,
I am so sorry to hear that you're in such pain. I definitely think a second opinion is in order. I am trying my hardest to manage most of this DD through natural alternatives. I do take pentasa and Mobic (an NSAID anti-inflammatory) for my joints (mostly knee and ankles). But I have so far averted Remi and Imuran and prednisone. My doc wants to put me on Imuran or Remi. I have instead started seeing an acupuncturist who has prescribed some herbs/supplements for me. I take Vit. D, fish oil, a natural glucosamine product, Isatis Cooling herb, a multi-vitamin and Align probiotic.
After six weeks, I feel that I am finally seeing some real progress on my joint pain. I attrirbute this to the acupuncture and combination of Isatis Cooling, fish oil, glucosamine and the probiotic. My acupuncturist has ordered a stool test to check permeability of my gut and to check for bacteria and parasites. I am hopeful this will yield some additional answers and strategies. I also try to juice fruits and veggies a couple of times a week. If you've tapped out on drug treatments, it would seem there's no harm in trying more natural approaches. I am really glad that I have so far.

My prayers are with you!
Posted 6/23/2009 2:15 PM (GMT 0)
pb4 do you mind giving me the brand names you use? Because I have been doing a protocol pretty similar (ginger instead of c tea) and wonder now if it might help to switch brands. Thanks!

Right now I am just really frustrated, because I getting to the point that walking more then 100 yards without fainting is difficult, and I am just in a tremenous amount of pain. I can taste puss in my vomit. So have to wonder about some weird infection.
Thanks for letting me vent about how crappy this is.

Thanks everyone.
Posted 6/23/2009 2:41 PM (GMT 0)
I am so sorry you feel so down about life right now.  It really sucks having these diseases.  I totally understand the frustrations you're feeling and hating all the meds you have to take.  It seems like we take one medication to help with a problem and then that medication causes 5 new problems.  That's how I'm feeling being on this Prednisone now.  See if you can find a support group in your area.  I have absolutely loved going to my group and actually meeting people going through the same things that I am.  It makes you feel hope because there are always people that are worse off than yourself.  I know it doesn't feel that way to you now, but I found it to be true.  One lady in my group only has 4-feet of bowel left and she looks great.  She inspires me to keep moving forward.  Good luck and hang in there.  :-)
Posted 6/23/2009 2:53 PM (GMT 0)
MMMNAVY is loved!!!!
Posted 6/23/2009 3:05 PM (GMT 0)
Just stopping in to say I am thinking of you MMMMNavy. I hope you can get some relief. I agree with the second opinion. It is always good to get a new set of eyes and opinion. Please take care and let us know how you are doing
Posted 6/23/2009 5:37 PM (GMT 0)
Hey Navy, the bee propolis, omegas 3-6-9, vitamins A and C-calcium ascorbate I use is from puritans pride online, the chamomile I buy directly from a tea shop in bulk (I used to use clestial seasonings chamomile tea but not near as effective of course compared to tea store tea).

I also forgot to mention I take one fibre supplement every night ever since my GI suggested I do daily and indefinitely, I chose to use one called Prodiem which is similar to Metamucil and it has also been a huge help, but if you or anyone else suffers with strictures/blockages, do be careful with fibre supplements, they should be safe but double chek with your own Docs.

:)
Posted 6/23/2009 10:59 PM (GMT 0)
((hugs)) I think that you should go to the mayo, I've heard that they are good and should get you healed up soon.
Posted 6/23/2009 11:30 PM (GMT 0)
I too have hit a low with my disease and I really feel for you. I am looking into homopathic help, but not instead medication. I believe that a balance can be achieved. You will be in my thoughtsand you deserve all the help that you can get.
Posted 6/23/2009 11:31 PM (GMT 0)
sorry, but i forgot to ask what meds do they have you on? and where is your crohn's located?
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