Community Forum

Hey everyone,
I kinda just looking for some understanding. My friends just do not get it. I have UC, this is my 3rd year of the disease and the first time ive gone 10 months with out steroids.

Here is my problem, I am currently flaring and the doctor precribed antibiotics instead of steroids. BUT I have HAD it with pill popping.... 3 times a day I have to carry pills with me and I understand the pills make me feel better I do honestly I am just SICK of consistently being reminded that I am sick.

I am only 24 and I feel like I am taking the amount of meds a 50 year old takes. I am taking about 12 pills a day total, around the clock. Ive gotten to the point that I am going days with out taking meds. or skip doses I know in the end the only one I am hurting is my self....

I would like to hear from people that feel the same. Thank you,
Ashley

P.s. Just to be clear I am not looking for quack health suggestions. Support only.

 Reply posted for izzymovielover.

After 6 years of 9 pills a day for Grave's Disease and then for a year I had to take 7 more pills a day for Crohn's.... I finally said "THAT'S IT!" I stopped allllll my medication (even though my doctors weren't very happy with the decision).

I started keeping a more, in depth, food journal. I wrote down EVERYTHING I ate. If it bothered my stomach... I quit eating it. Currently, I do not eat Beef or Pork. I steer clear of anything containing MSG. I limit my intake of dairy and sugars. And I feel Wonderful!

Yes, I still have times when my stomach gives me problems but it feels sooo much better than it did when I was taking several medications! I'm not saying stop taking your meds but sometimes it's easier to just watch your lifestyle than pumping your body full of the 'unnatural'.

Medications are unnatural to one's body. I feel that they sometimes do more harm than good! And I wonder, just how much money are doctors making for each prescription you take??

You must make your own decisions. No one... not doctors or other patients can make the decisions for you. How you live and How you WANT to live are totally up to you!

Best of luck to you!

 Reply posted for izzymovielover.

I was non compliant with meds because I have dealt with this since I 17 and am now 45.  All it got me was sicker.  Right now I am taking 2 Asacol HR DR (timed release) 3x's per day.  Down to 2 prednisone xday, 3 azathioprine per day and Humira shot every other week.  It sucks sometimes but I just remind myself that I have not had surgery.  The doctor told me after I came out of remission if I did not get better it would be a consideration.  I try to remind myself of positive thoughts because I think the bag would suck more than pills.

 Reply posted for izzymovielover.

hey, I know how you feel. I was diagnosed when I was 15 and am now 22. I take 10 pills a day and actually am on steroids right now because of a recent flare up. I was good without symptoms for nine months but then started slacking on taking my meds and my diet was horrible too. So now I'm back to trying to get healthy again. I can't even remember what it was like before I was 15 and not taking pills. Its become part of my life now and just have to life with it. :/ (which reminds me, time to take my next dose of meds lol) 

 Reply posted for Lizzies Mom.

Thanks I appropriate the support! :) good luck to your daughter she seems to have a great supportive mom!

 Reply posted for izzymovielover.

I understand your frustrations and have had many of "sorry for me" moments w/my daughter.   Imagine being in her shoes, she was only 4 when she was diagnosed!  "Healthy" friends will never understand, they can't, they aren't living with it.

I'll give you some friendly advice, be compliant.   It is sooooo important.  Diet, meds, supplements, exercise, sleep, etc. (you know the drill).   I have explained it many, many times to my daughter that yes, she has a "special belly", but it doesn't define who she is.   I think it is easier sometimes for little ones to understand.   Sure she gets tired of taking her meds too.   Now a days we call them supplements, after all, everybody should take some supplements of one kind or another.   She sees me taking mine every day.   This disease is manageable, she is living a happy life, gets good grades, loves gymnastics, is creative and the interesting part of it all is that none of her friends even know.  Actually, if you had to pick the CD kid out of a classroom full of kids, you'd never be able to figure it out.

Be well,

Lizzies Mom  

 Reply posted for izzymovielover.

Whats your suggestion? 

 Reply posted for alanschachter.

Hi Alan.  Id like to read that Maryland study.  Whats the link?

 Reply posted for izzymovielover.

I think we have all felt like giving up on the meds and our doctors at one time or another. I used to think Alan was had another agenda too when I first saw his posts on here (sorry Alan), but then I gave the LDN a try myself after all levels of the actual crohns meds failed me. After only 2 months of taking a very, very low dose of the LDN (much lower than the recommended for crohns) my white count went from 14.5 down to 11.4 (11 is the high end of the norm range). I am hopeful to someday get off the steroids that I have been on since my diagnosis in 2004. Alan is just trying to help everyone realize there are other ways. Do the research yourself on things like LDN as there is a lof out there you can find with google if you don't like his links. I don't follow a specific diet either, but my diet happens to closely align with SCD or Paleo just from what I eat on my own due to my crohns and what works for me. I can still eat some pasta and breads and not feel sick. Maybe I should give them up, but right now things are working for me. In the past things weren't so good. My family even comments that they have not seen me so well and actually leaving the house without thinking of where the next bathroom is in years.  I don't take any supplements or probiotics either. Just take Vitamin D3 at the recommendation two of my docs because my levels are very low without it. If I hadn't started looking into things that Alan mentioned on here I would have never found the LDN or started taking it. I don't know Alan, other than from this website, but he has opened my eyes to really being my own advocate in this fight against crohns. I can't thank him enough for that. Save your anger for your crohns and not for people like Alan trying to share what has worked for his family.

 Reply posted for alanschachter.

Your first reply " with no drugs at all. Others need key supplements" Your article suggests probiotics which is a supplement.  I got IBD after taking probiotics... you don't see me posting replys to people to avoid probiotics because that was my experience and not proven science. To each their own and until treatments are scientifically proven you will not see me suggesting that to people. I was not looking for quack treatment suggestions. Thanks.

 Reply posted for alanschachter.

If diet changes and probiotics were helpful we would all be cured. I don't buy this.... and its annoying you push your own agenda in reply to every post. Boring.