Crohn's Disease Forum » General IBD Discussion » Who else is frustrated, irritated, agitated and angry at IBD ?


09-14-2018, 09:10 PM   #1
Lynda Lynda
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Who else is frustrated, irritated, agitated and angry at IBD ?

Nothing is making sense to me today. Why doesn't my GI doctor mention nutrition as a way of healing or helping to lessen the inflammation of my Crohn's Disease ? Why did my GI doctor never mention probiotics to me, instead I mentioned probiotics to him ? Why do I have to find out 99% of the information about my Crohn's from the Internet and support groups like this one, and not from my GI doctor ? My GI doctor never mentioned the CCFA. And of course my GI doctor would never recommend anything but pharmaceutical medications to help heal or lessen my inflammation, because "big pharma" has a substantial influence over them....oh, yeah, it's called profits, or $$. Why doesn't my Health Insurance Company help cover the cost of a nutritionist or dietitian ? It takes more than one way of thinking or one prescription medication to help me heal or improve my health, it takes mind, body and spirit. Options are out there that are new or unknown to me, but my GI doctor is only of one mind and that mind is on powerful drugs that make him and "big pharma" rich.

Signed, a person who wants to heal and live a better quality of life....physically, mentally and spiritually....and is unsure if this is even possible.
09-15-2018, 07:30 AM   #2
scottsma
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Is it possible for you to change doctors ? You're not happy with your present situation so I would be trying to find a GI who would work with you.You'll find many posts like yours,sadly.I hope you find satisfaction soon.(by the way,you've been missed on the weather thread)
09-15-2018, 10:03 AM   #3
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Could not agree with you more, Lynda!!
09-15-2018, 10:50 AM   #4
Bufford
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Lynda, its good to see you on the forums. You need to find another doctor, the one you have now does not meet your needs. I look for doctors that are willing to work with me and not visa versa. Don't hesitate to question the treatments they offer, these conversations can help open up possibilities for new avenues of treatment, or provide you with more evidence to switch doctors.
We only have one body, and we need to take good care of it, and finding a good doctor is of importance. Doctors are only human and make mistakes too.
09-15-2018, 05:31 PM   #5
Lynda Lynda
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NuttyGuts, hey. I was in your town in 2004 to see the Spruce Goose ! A really nice city. 🙂
09-15-2018, 05:37 PM   #6
Lynda Lynda
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I am making plans right now to help myself feel better. I will start on October 1st. I have a lot of work to do on my food consumption.....with what I eat, how much I eat and when I eat it. I have been treating my body badly, gaining weight, bloating, swollen ankles and calves and my blood pressure going up. Some sensible and slow changes in my lifestyle are badly needed. ❤
09-15-2018, 08:38 PM   #7
NuttyGuts
 
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Yes, Lynda, I am lucky to live up here in the great northwest- I LOVE Oregon! If you come up again, let's get together!
I think Bufford is right- you probably want to look around for a different GI doc. I just recently changed mine, looking for one more open to alternative treatments and use of diet (like SCD) and eventually lesser impact drugs (like low-dose naltrexone) for maintenance. She is very knowledgeable in these areas, but unfortunately, years of scar tissue have left me with strictures that mean prednisone, imuran and remicade for now, and probably surgery soon. I don't want to wait too long, because I know the risk of fistulas and abscesses increases with all these partial bowel obstructions. At this point, I have no idea what medicare will cover and what I will have to pay. I have always been healthy except for this Crohn's so the hardest part for me has been accepting that drugs and surgery are going to be a part of my life. So for now, I am trusting the new doc and her plan. Backed off to 15mg prednisone a day for two weeks, got the flu shot and the HepA/B booster shot yesterday. Been on azathioprine three weeks now. Going for my first Remicade infusion the 25th. Then will back off the prednisone 5 mg at a time. Scared to death about what all these drugs are doing to me, and looking forward to a time post-surgery when I can try to maintain with SCD and LDN.
Sorry to run on so- best wishes to you!
09-16-2018, 02:40 AM   #8
Lynda Lynda
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NuttyGuts : Oh my, I am so sorry you have to go through all that. 🙁
My sister has been on prednisone for a very long time for her RA, it is so difficult to wean off of it.
I would love to visit Oregon again, but my health and lack of money won't allow it. My sister visited the Oregon Coast this summer. Lucky her.
Sending hope and prayers your way. 🙏💕
09-16-2018, 10:24 AM   #9
Bufford
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Oregon, Utah, Arizona, Alaska, and their adjacent states; these are some of the finest if not the finest places on the planet. Perhaps in my next life I may have a chance to live under the big skies out there.
May the good air help foster good health.
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