Community Forum

Reply posted for Scottflanagan3.

I find it interesting you are freaking out about possible future side effects of various drugs yet are using prednisone.  I know first hand the terrible side effects of prednisone, and they hit you pretty quick.  Since you say your symptoms are fairly mild, maybe you should quit the drug therapy’s and look into some of the more natural therapies many people on these boards advocate for , like vegan diet.  You might suffer a little more physically, but be much better off mentally.  You’ll have to figure out what trade offs work best for you.

Reply posted for Scottflanagan3.

I understand your feeling of fear and trepidation of using more drugs to relieve your symptoms.
I would like to suggest a different approach which has worked for me. I no longer use a Microwave for anything. No liquids or food. I stopped using microwaves six months ago, and my problems are slowly going away. I have not had any flareups, or reactions to any food.
Read up about the danger of microwaves, and stop using them to see if it relieves your problems.

James

Reply posted for Scottflanagan3.

Scottflanagan3
 
Sorry to read that you are struggling with treatment options. Choosing the best treatment option is a challenging decision to make.  Please know that you are not alone. It is natural to experience feelings of concern regarding medications and their side effects.  While all drugs have side effects, some more potent than others, you and your gastroenterologist should decide the proper course of treatment. 
Coping with a chronic illness like IBD can be very challenging.  It is important for you to find  find support.  This can be with family and/or friends, through a support group or online community, or possibly with a mental health professional.  Many IBD patients and their loved ones find support groups to be a valuable resource for information, support and guidance.  If you would like information on support groups and educational events in your area you may go to the following link and click on your state: http://www.crohnscolitisfoundation.org/chapters/   
 
Another program is “The Power of 2” program.  This is a program where you are paired up with a mentor who may have had similar experiences with IBD.  It can be helpful to talk one on one with another patient or family member.   If you would like to talk to another patient email powerof2@crohnscolitisfoundation.org  
 

Reply posted for Scottflanagan3.

i have had crohns for 21 years.  i took only prednisone during major flares.  i went the alternative route using chiropractic care.  It is so worth it.  In the last three years i have been diagnosed with asthma and PMLE.  My auto immune diseases are now clustering.  after a scope with removal of pre canerous polyp,as well as  skin cancer on my shouder; my GI dr wants me to start Humera, that my insurance denied.  so  i am looking at these meds that scare the crap out of me. i struggle with the same fears.  i have started the Shepherd's Code, eating lifestyle change, based  on the Bible.  It is working great but i have a lot of scar tissue in two areas causing restritions. 
I'm worried about these meds bc i already have all the side effects of them.

Reply posted for Scottflanagan3.

My teenage son was dx with Crohns at age 10,and had been on Pentasa for 7 yrs (with some Presdnisone for a couple flairs), until a bad flair (1st one) recently, and just began Imuran, which I struggled with greatly!  I too am very afraid of the potential side effects (especially lymphoma), but have been told time and time again no diet will cure, or cause flairs, and that Pentasa is not generally a long term treatment (at least for Crohns).  I guess I feel kind of hopeless that there is anything else I can do to prevent damage to my son's body, and it is an awful thought.  So far he seems ok, but I have been told it is a progressive disease, and so I hope new developments come about in time for the present people suffering, to benefit!  I hate the thought of even stronger meds, but if you don't treat the disease, the damage inflammation will cause can also cause major damage and complications.  I was told that all the side effects have to be listed, even if they happened once, and that lymphoma was extremely rare...I hope I can trust the medical professionals who are guiding our journey...best of luck:) 

Reply posted for Scottflanagan3.

Everybody is different as far as  how bad their disease is and how they respond to treatment.  I had UC and the only thing that helped was prednisone, and I had to eventually get off that.  My colitis was severe and eventually I had a proctocollectomy.  It worked fairly well for awhile but then I developed Crohn’s disease.  I was on Remicade for two years but it did nothing for me, now I am starting entyvio.  I’m hoping that does something for me. Crohn’s is bad, but the UC was worse.

Reply posted for charbs.

Yes, I’ll admit I need to dive more into the alternative therapies and have been looking at a few based on the message boards. I agree with you about prednisone and the side effects were difficult and I almost quit a handful of times but it stopped the flair immediately so I stuck it out. Also, knowing there was an end date for that gave me a “light at the end of the tunnel” feel. I knew what I was feeling wouldn’t last once I was off it. Once it was completed and the pentasa was keeping me in remission provided me such relief.

I went to a specialized GI clinic and the PA there just was so robotic and not appreciating the struggle I was vocalizing. I know they just think another patient, another drug, another hypochondriac. But it’s more then that to me. This is my life and yes UC is awful but the standard ‘treatments’ for this are just as bad in my eyes.  

I appreciate your response and my wife and I are looking into realistic and alternative treatment options. 

Thank you