Share Facebook
Crohn's Disease Forum » Your Story » 44 and newly diagnosed with Crohn's


08-04-2015, 07:33 PM   #1
Dayblaze
 
Dayblaze's Avatar
 
Join Date: Aug 2015
Location: Long Island, New York
44 and newly diagnosed with Crohn's

Hello...... newly diagnosed on July 30th, not even a full week has passed by.

Still processing all this. Reading a lot in a short period of time.

Not too sure how I am feeling about having a disease that has no cure, with remission or a reduction in symptoms as the only hope.

Not comfortable with taking meds every day for the rest of my life = Pentasa, I have thoughts like, Will it work? Will I need more meds, a cocktail of them? Go natural with diet alone, or construct a hybrid mish-mash of treatment regimens? A lot to take in and consider.

I am more introspective, and perhaps not in a good way. Reviewing every stomach issue I have had in the past few months, searching for the possible trigger to this disease. Every gurgle and twinge in my stomach has me on edge. Will I get worse, eventually lose feet of my intestines to inflammation?

I'm just processing all this and coming to terms with the reality....

Already I was the topic of conversation at a backyard BBQ when my girlfriend in hushed tones began discussing my unfortunate plight with my other friends that did not know of my diagnosis. I had a wave of conflicting emotions. I was pitted by some and I felt various shades of being sad, humiliated, then grateful for having sympathetic friends, but yet shameful as I felt that somehow I became the entertainment for the nights discussion, and I felt bad about myself. I am surprised about feeling these new combinations of emotions for the first time. Very complex stuff.

Since I am just diagnosed, I am asking advice from everyone who has had Crohn's for a while, and who would like to share.
Knowing what you do now, looking back, what advice can you give me?
Thanks
08-04-2015, 10:42 PM   #2
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

My Support Groups:
Welcome to the forum, sorry you had to find us.
It's true that there's no cure for Crohn's, YET. They have come up with a whole slew of medications in the last decade. Looking back, I would say don't take everything you read to heart. It may not apply to you at all. I haven't had any inflammation in my small intestines, I don't get strictures. Also, what works for someone else, may not help you at all. You will go through all kinds of emotions. I don't talk about my illness, because some people will say the most awful and stupid things. This is a good place to ask questions, but you may get conflicting advice at times Oh and to go with diet alone I think is foolhardy. The disease can silently destroy your intestines in the meantime.
__________________
Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
08-04-2015, 10:59 PM   #3
Madhu
Senior Member
 
Madhu's Avatar
 
Join Date: Jul 2015
Location: New Jersey

My Support Groups:
Stay strong The beginning is always the hardest, as they say. Try not to read too much in the internet. I stopped researching outside of this forum because this is the place where I can get answers relevant to my situation. Other websites always scare me too much. Once you get settled on a medication pattern, things will slowly ease down and you will start feeling comfortable with yourself. My husband who was too sick to roll out of bed last month because of Crohn's is now almost back to normal and pretty active. Sending good thoughts your way
__________________
Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
08-04-2015, 11:03 PM   #4
Justanothercp
Senior Member
 
Justanothercp's Avatar
 
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
Ahh, looking back... I would have told myself to take a deep breath, educate myself and not let it define me. I certainly wouldn't have waited nearly as long as I did for my first surgery, I felt like I failed- which of course I didn't.
Most importantly, I would have taken diet way more serious. Different diets work for different people, but the Paleo diet has made a huge difference in my life.
Good luck on your journey. Keep us posted. This website can be a great resource.
08-05-2015, 12:45 AM   #5
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
Ive had crohns for 14 years. I got several years of full remissison , feeling like I was a perfectly healthy individual. Ive been struggling a bit in the last years, but feeling good now. I believe the future is bright for IBD as several very intresting treatments are on the way. At diagnosis, i wish I had taken diet more seriously and be good in feeding my body with healthy home food. Instead, I continued eating junk and processed food in large amount for 10 years. I regret that. Ive been opening up to alternative initiatives in the last 4 years and I also wish i had started that at diagnosis.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
08-05-2015, 01:26 AM   #6
Soohie
 
Soohie's Avatar
 
Join Date: Aug 2015
Location: Seattle, Washington
I am 44 newly diagnosed 2 weeks ago after 4 days in hospital and being sick for 6 weeks
I still learning coming to terms I start remicade tomorrow first treatment
Reply

Crohn's Disease Forum » Your Story » 44 and newly diagnosed with Crohn's
Thread Tools


All times are GMT -5. The time now is 06:47 PM.
Copyright 2006-2017 Crohnsforum.com