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Just got diagnosis Monday, 11/2 - beside myself with fear!


Thu, November 05, 2020 12:06 PM

Hi All, 

I just got diagnosed with mild Crohn's disease on Monday! I am just beside myself. Over the last few months, I was so proud of myself. I started working out more and changed my diet (no gluten, dairy, alcohol, red meat, processed food, etc.). I don't take medicine and only buy organic. I just do not understand how this could have happened :(. 

The things that worry me most is the word "disease", this means it's progesssive!, the potential of surgery, and the increased risk of cancer. I also have not seen a lot of people live long (80 +) with Crohn's. I am so overwhelmed, scared, and feel so alone. What about my babies? I am only 32 :(. I am just devasted. 

My mom, who is a nurse, suggested I find a support group and speak with a nutritionist.

I already have anxiety :(. What else can I do to find hope and cope? I feel so scared and alone. 

Thank you!

AN

FPO analexander2
Joined Nov 5, 2020

Sun, February 14, 2021 7:56 PM

Reply posted for analexander2.

I was with you up until I read you don't take any medicines. I had ulcerative colitis, had a collectomy, have Crohn's, diabetes and a heart condition. I applaud you your progress but gotta tell you: drugs have made my life live able, so don't rule them out. Everybody responds differently to the various treatments and therapies available. Remicade and entyvio do nothing for me, yet on these boards some people have very good results. I am hoping to find a drug that works for me. I'm glad your efforts in diet and lifestyle have helped but please don't rule out established western medicine. My collectomy made my life so much better, and I'm pretty sure the surgery has made the effects of the Crohn's less severe. Best wishes, and don't get discouraged!

FPO charbs
Joined Oct 31, 2016

Sun, January 31, 2021 7:51 PM

Reply posted for karenkrugler.

Hi,

I was also diagnosed recently and share your experience of fear. I also have a "mild" case and am waiting to hear what my doc will prescribe. I live in Santa Fe and looking forward to finding support like you. There are not a lot of doctors here and they are extremely busy. They don't  seem to have much time to talk. I'd like to feel less fear about starting biologicals, because that's what's next for me. I'm really afraid of having lowered immunity and being "sickly" for the rest of my life. This is the only disease I've ever had. 

Karen

FPO karenkrugler
Joined Jan 24, 2021

Wed, January 06, 2021 11:31 AM

Reply posted for bicaci.

I started Crohn's symtoms at 14 years of age and diagnosed when I was 64 years old.  Nothing to worry about and concern.  Stress does impact the symptoms therefor don't concern your self.  Diet is the main source of cure and exercise.  A doctor on TV said we discovered flour about 10,000 years ago and we've been sick ever since.  Since I was able to reverse most of my health problems when I stopped eating bread and sweets I belive his opinion.  The source of the problem for the disease is the liver and your diet.  The liver, The Command Center, is an intelligent organ controlling our health.  Europe is much more knowledgable than US when it comes to the liver.  Our Doctors are drug trained and not nutrition trained causing a big profitable economy.  The treatment of Crohn's by lowering the immune system for me is totally wrong approach but I am not a doctor.  I witnessed the effects from the Doctor in Italy that cured me for 3 years free of any symptom and clear mefory and eyes.  Since the Free Radicals of the liver, toxins, fat, and other congestive items cusing problems I wished they will learn more about the functions of the Liver than prescribing medications that offends the Liver.  Avoiding reach foods, processed foods, bread and flour items, carbohydrates, and sugars can start lifting your health.  A lot of vegetables is a cure, but one small item will throw the entire diet off.  I am continuing to learning what is impacting my symptoms.  I noticed fruits also showing impact because of the sugars.  I was almost diabetic for 20 years and no Doctor told me not to eat bread.  Now I reversed the diabetic condition but sensitive to any sugars and salt.  Avoid any process foods and preservatives.  My best wishes.

FPO bicaci
Joined Aug 27, 2014

Tue, November 17, 2020 7:04 PM

Reply posted for analexander2.

Fear itself is a big enemy, as is anxiety. After years of coping with UC, I can say safely that our underlying stress levels play a big part in mediating both our gut biofeedback, and, our ability to clearly and calmly help ourselves.

It's great that you are already changing your diet and exercise routine. My main dietary changes were

- cutting out processed and low quality foods
- cutting out gluten, corn, dairy, nightshades, seeds, and very rough fiber (i.e. apple skins)
- increasing my intake of COOKED vegetables, and for uncooked vegetables focusing on making them digestive with acids and oils, eating leafy greens
- I still eat meat but only high quality and I reduced the intake overall, especially of nitrous types and red meats

But also do not be afraid to take additional steps like talking to a holistic doctor who can give you a broader perspective; talking to a psychologist to reduce stress; and take very good care of your sleep, hydration, and cortisol/stress levels through mindfulness and meditation or whatever activities make you happy and light.

FPO espitzberg
Joined Nov 17, 2020

Thu, November 12, 2020 9:00 AM

Reply posted for uclife11.

Thank you so much for your positivity and kind words...I have held them close in this last week. Do you mind sharing specifically what you found that words for you in terms of diet, stress, and exercise?

FPO analexander2
Joined Nov 5, 2020

Thu, November 12, 2020 8:57 AM

Reply posted for Stan232.

Hi, Again!

You mention root cause - can you elaborate on that?

Since last week, like I'm sure many people do I have DOVE head first into the research about Crohn's and IBD. I am trying my best to stay away from reading about the complications. Obviously this has been studied extensively, but I wonder if there is no "cause" or "cure" because whatever bacteria, virus, pathogen, etc. that triggered the immune reaction in the first place is different for every person. So yes, our immune systems all function the same way, but to different things. Also, I wonder if IBD is a close or distant cousin to Celiac and we just have not found what that common thread is for everyone. Do you have any thoughts on this? Feel free to PM me at alexis.alexander29@gmail.com if desired.

FPO analexander2
Joined Nov 5, 2020

Thu, November 12, 2020 8:51 AM

Reply posted for Stan232.

Hi! no I haven't. I have only heard of EMDR...I wonder if they are related?

FPO analexander2
Joined Nov 5, 2020

Thu, November 12, 2020 8:51 AM

Reply posted for administrator.

Thank you so much! you all have been super helpful so far!

FPO analexander2
Joined Nov 5, 2020

Wed, November 11, 2020 12:29 PM

Reply posted for administrator.

AN,

The first step.... learn all you can about Crohn's Disease.  We have resources that can help at:
https://www.crohnscolitisfoundation.org/what-is-ibd/newly-diagnosed.
Start a journal or notebook to keep track of important information.  Be a part of your own health care team.  Ask your health care team questions and talk with other patients.  Call the IBD Help Center if you want to talk 888-694-8872 x 8

FPO administrator
Joined Oct 12, 2017

Fri, November 06, 2020 7:56 AM

Reply posted for Stan232.

Alexander, have you considered hypnotherapy for anxiety?

FPO Stan232
Joined Nov 6, 2020

Fri, November 06, 2020 7:50 AM

Reply posted for analexander2.

Sorry to hear about your fear. You have every right to feel this way. You are on the right track to good health. I hope you find your root cause and regain your health back to normal.

FPO Stan232
Joined Nov 6, 2020

Thu, November 05, 2020 3:32 PM

Reply posted for analexander2.

I remember vividly the first week after my diagnosis. It is understandably overwhelming to hear you have a chronic illness. Almost 20 years later I can tell you that it doesn't have to get worse. My disease progression has only improved over time. So much so, I've gone off some medication. I credit having a great doctor who specializes in Crohn’s/UC. Also diet, exercise, and stress management. Likely genetics plays the strongest role in getting Crohn’s, something you have no control over. In fact you are already doing so many things right. Diet, exercise and reaching out to others, this is how you will cope.  

 

It’s important to remember that while making lifestyle changes will help you manage your way through this, the disease is autoimmune. Autoimmune diseases are very common but still unpredictable. I agree that you should find a support group. There is a lot of information and treatment options available today, much more than I had 20 years ago, this is excellent news.

 

One more thing, stay positive! I’ll give you the quick upside. You know what’s wrong with you-yay! Some people wait years for a diagnosis. Your disease is so far mild-yay! The changes you’ve already made will likely keep it that way. Sounds like you have a great mom-yay! 

 

FPO uclife11
Joined Jul 24, 2020

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