Community Forum

I was diagnosed with Crohn's in 1998, and am now 31 years old.  I never heard of this disease until my diagnosis after a couple of stomach surgeries.  The first few years wern't too bad.  I took Pentasa, I believe 16 pills a day or somthing like that, but for the most part everything was under control.  I was treated by a very good GI specialist and a wonderful family doctor and my life was normal.  After about 2-3 years, my symptoms were almost unoticeable, but that was probably the last time.  Unfortunately, my health insurance also ran out at about this time.

 Reply posted for Benny.

HI, Benny,

I full relate to you story so i will keep it short.  Have you ever thought about going to socilal serves in you state, they helped me with title 19 which will help with med bills if you have a good doc that knows you well you might want to talk to him about ssd which will help with your income and you can work while on it but you need to check with you state again. I also can relate to the emotinal roller coaster you are going through. Hop this helped. hope to hear from you.

Princess

 Reply posted for Benny.

I am grateful however to all the smaller things i have tried to overcome  - the "flare-ups" and medication side effects and emotional bouts as well.  From medications to Remicade(wich was not successful after 6 months for me...i turned out to be one of the few who developed a heart condition as a side effect) to stricture-plasty, and resectioning of my colon, small intestine, and removal of my appendix (also Crohn's related.) Every one of these attempts to help put my disease in check and get on with living has added up to a decent life.  I've had 4 children, i am going on 22 years of marriage I had a successful career(all be it short...i'm now disabled of course) and i hope to in the next year or so continue with my art (a sort of early retirement........i'm 39).  I guess my suggestion for you (as i am a very practical person) would be to ask what your opinion would be on joining any of the many clinical trials that are constantly going on with the pharmacudical companies?  I only suggest this because it was a trial that introduced me to the wondeful REMICADE. Although i can no longer have REMICADE it did lengthen my stint between surgeries a few years longer than if it were not available at all. Also most trials are monitored closely and the providers usually compensate travel and time expenditures.  Another avenue to consider is financial assistance, many hospitals have "foundations" that can help out those who don't have insurance with a year or so of medications.  Mostly your time will be a large factor...the more time you can spend on research and implimentation the better options you will have.  So, if you have tried everything you know my final suggestion would be to keep checking forums like these and if i haven't helped i am certain SOMEONE will eventually.  Keep in touch with the rest of us.... you'll have help for one of us as well!

 Reply posted for Benny.

Hi Benny,

When i read your post it was the first time i actually was moved enough to respond.  I've "read" a lot of posts but never replied. Anyhow,  I know a lot of us understand what we all feel about having to live every life experience around our own illnesses ,but sharing advice and actually acting on those suggestions can be a little scary or seem very "out of the way" ideas.  I would however like to share with you.  I was diagnosed with Crohn's at age 18 and have struggled through every single life event always trying to "just make it through this short time/".  But as i look back it seems it has been the best way to really LIVE.  Like they say about any large task.....it's all the little things you do that add up to your sum.  I am comming up on surgery #9 and it is only meant to buy me a few more years.  

 Reply posted for Benny.

Hey Benny,
I just want to encourage you to continue to stay strong.   Here are a few things you might find helpful.   I've found that deep breathing daily for 20-30 minutes has been helping me A LOT with being more calm, stress free, etc which is great for the immune system.  Also, my doctor has me sleeping 9-11 hours each night to also aid in the healing process.  I'm also taking USANA supplements and also drink the Nutrimeal shakes (at least one daily) to help my body build up defenses and help strengthen my immune system.  My doctor also recommended a book called "Unstuck" by James S. Gordon, MD.  It says on the cover that it's for "depression" but I have found MANY things in it beneficial whether depressed or not.  I will be praying for you as you fight this battle.  Know that you are NOT alone, friend.  Cling to positive thoughts, hope, faith, anything you find inspiring.  I find that I feel better the more positively I think about things.  Yes, there will be hard days, but as in my previous post on here... it's all in how we handle and respond to the hard days.  Don't give up.... cling to the good days and I will pray for great days for you!!!!!  :)

 Reply posted for Benny.

fast forward........over the last 2 years or so, i have now had 4 hospital stays, with several more ER visits sprinkled in.  With the lack of insurance, the only meds I take are the ones I get after i become symptomatic or have flare-ups.          I'm not sure what I beleive this post will illicit.  I guess Im just hoping for some reassurence.  This illness has cost my time in college, several employment oppertunities, 1 relationship, and countless nights with no sleep.  I have a decent support staff around me, but the frustration of  my health concerns is seemingly constant on my mind, and as I get older now, the thoughts of the limitations becomes harder to handle.  I guess I never realized how crippling this illness can be.  I consider myself very tough and strong willed, but the pain I deal with, both mental and physical, is starting to take its toll.   It took me a while to actually visit sites like this online, denial i guess, but am glad to have found it now.  Hopefully some communications witht those who share in these issues will be of some relief.  I  hope i get to hear from some of you soon.