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Crohn's disease


Sat, April 04, 2020 3:39 PM

I am a 55yr old female, I was recently diagnosed with Crohn's in march 2020, they had put me on prednisone before the diagnosis to see if that would help, which it did. Now that I have the diagnosis they are weaning me off the prednisone and have put me on Humira.  I just did the first 2 - 80mg shots and I am due for my next 80mg shot next week.  I was hoping someone would let me know if they are on it and is it working for ypo.  I know I have at least months before they said I would start feeling a difference so I am hopeful.  These last 2 years have been brutal to the point where I just didn't think I could do anymore but I have a great support system at home. Also anyone with advice on foods to try that would aleviate some of this pressure would be great.  I live in Las Vegas  and our medical is a disgrace, it took a lot of begging and crying before I found a GI that didn't give up on me.

any help or advice from anyone would be awesome, feeling so alone and isolated.

Thanks for listening everyone stay safe, healthy and inside 
Rene

FPO rbucciwhite65
Joined Apr 4, 2020

Wed, February 24, 2021 8:47 PM

Reply posted for trish.

Hi everyone, I was diagnosedJan 2021. This information is so helpful for those of us newly diagnosed individuals. I love the idea of drinking ginger tea in the morning and at night before bed. Ginger is known for relieving inflammation. I'm meeting with a nutritionist next week and looking forward to the visit all because it is very difficult to change your diet overnight. My Dr never mentioned anything about changing my diet, just stay away from "sweet drinks, spicy and fried food". I do have a question???? Do anyone experience issues with eating salads? I love salads however, having issues with digestion.

FPO ehall
Joined Feb 24, 2021

Wed, February 24, 2021 8:45 PM

Reply posted for trish.

Hi everyone, I was diagnosedJan 2021. This information is so helpful for those of us newly diagnosed individuals. I love the idea of drinking ginger tea in the morning and at night before bed. Ginger is known for relieving inflammation. I'm meeting with a nutritionist next week and looking forward to the visit all because it is very difficult to change your diet overnight. My Dr never mentioned anything about changing my diet, just stay away from "sweet drinks, spicy and fried food". I do have a question???? Do anyone experience issues with eating salads? I love salads however, having issues with digestion.

FPO ehall
Joined Feb 24, 2021

Wed, January 06, 2021 11:02 AM

Reply posted for rbucciwhite65.

I am sory to hear your suffering.  My Crohn;s symptoms started when I was 14 years old and at 15 the diagnosis was to remove part of my intestine that was causing a lot of pain.  My inteligent mother wanted an opinion from a Doctor in Italy and when he touched my abdomin I fainted.  He prescribed shots of:  Methionine, Vitamin B-12, and Vitamin K.  A two week treatment and I was breand new for 3 years.  The source of the problem is the Liver I call it the Command Center.  To convince American Doctors of such treatment that were not of drugs is impossible.  I treat my self now with supplements of the Liver and controlling Crohn's not curing it.  Stress also is a big factor in flaring the symptoms.  The main problem of my symptoms were Bread and Carbohydrates meaning sugars.  No doctor coould figure out why my legs were swelling in extreme pain.  I was amazed of my treatment of Endives 8 and Red Radishes 10 within one hour the red turned pink and the next day the symptoms were gone.  It means the Liver controls the system's beheviour.  I discovered that raw vegetables have the power of removing inflamation within few hours.  The treatment of Crohn's is to lower the immune system imagine with Covid-19 around.  I lost faith in Doctors and took matters in my hands the last 4 years.  I am 76 now and going strong.  Processed foods, can foods, preservatives, and sugars is a problem not just for me for the human race.  The best is to consume fresh foods.  Good luck to you.

FPO bicaci
Joined Aug 27, 2014

Sun, January 03, 2021 1:08 AM

Reply posted for rbucciwhite65.

Long term suffer. I've been on many meds. I have found I cup fresh ginger tea in the am and 1 cup at night truly helps. I'm having a rough month but this is my worst attack in 10 years & I attribute to the ginger. There are a few studies. Works for me. Protein only diet makes huge difference, introduce green veggies when intestines are calm. 

FPO trish
Joined Dec 18, 2010

Mon, December 14, 2020 10:31 PM

Reply posted for rbucciwhite65.

I am 50 and recently diagnosed as well.  I have probably had this for a while but was able to deal with symptoms that would last a day or 2 and I would do a liquid diet and pick right back up.  Since May it has only intensified and my life is so much different than it was 6 months ago.  I've been keeping a detailed food journal, but still am very limited in what I can eat and fearful of what I put in my mouth.

Just started on Humira and trying to be optimistic - was told it could take at least 6 weeks to feel any difference.  Luckily I don't have diarreha, but the abdominal pain/burning and constant gurgling is just too much.  It also comes along with nausea, chills, vomiting.  

Was hopeful when I went 4 weeks in November without a flare up, but then 4 days after my first Humira (and relaxing my eating), I started a flareup that is 7 days in.  Ugh!  

Can anyone else share if their symptoms were similar - especially the gurgling? How often do others reach out to their doctors?  I have a follow-up in mid-January and not sure if I should wait or call her before then?

Also would love to some positives about biologics (humira in particular).....

FPO ouellette123
Joined Dec 14, 2020

Fri, November 06, 2020 3:25 PM

Reply posted for rbucciwhite65.

Sorry to hear about your suffering. Hopefully you will find the core problem soon. It takes a lot of experimentation. I suffer 20 years from the age of 20 to 40. I've been okay for the last 20 years. I'm 64 now. Gluten was a big contribution but the core problem for my colitis, everybody's different, was picking up something heavy which Crush discs in my neck and back the cut off nerves to my colon. I can only pick up 20 pounds. My sister's got a Crohn's and she blames it on her back also. Blessings Stan

FPO Stan232
Joined Nov 6, 2020

Sat, July 11, 2020 3:10 AM

Reply posted for Beno55.

Still on Humira feeling better after the prednisone which gave me high anxiety and feeling quite in well about to have a colonoscopy and an MRI to see whether humira has reduced inflammation over 12 month trial period. I believe that this biological has not worked and will look at an alternative. Some reports have mentioned Steelers as the next best pathway. Let's see

FPO Beno55
Joined Dec 26, 2018

Thu, June 04, 2020 10:14 PM

Reply posted for JennyG66.

Hello!Sorry to hear about your recent diagnosis.. I would tell you "welcome"..but what is there to welcome about Crohns?!!Im the same age as you and Ive had Crohns disease for almost 40 years! I was very lucky as I had been in remission for almost 25 years following 2 major surgeries to take out chunks of intestines.. hard to believe, but true... but then in 2016, it reared its ugly head... darn it. I had a blockage but overcame it quicker and I thought I had tamed it.. refusing to go back on long lasting meds.. it was short lived.. and lasted for just 4 years and here I am, back to the grueling stomach pains. vomiting, blood and the usual shenanigans of diarrhea and constipation.. anyway, to cut a long story short Ill be joining you on the journey of Humira pretty soon.. starting my first dose sooner than I would care to, sticking myself with needles, isnt what I call a whole bunch of fun!Anyway, Im looking at this as a pit stop and hoping Im back in remission soon. Everyone is different when it comes to foods. Some people can tolerate most things, others have a hard time. Its trial and error and there isnt a specific do or dont list of stuff to stick to. My sister has crohns also and I can eat way more things without it affecting me, whereas she has to be very careful of a lot of things... so really, only YOU will really be able to figure it out. During flare ups, its really best to eat bland foods.. give your gut time off from having to work to digest. Youll be thankful for it. Stay OFF fried foods, processed foods and eat simple. Good luck!

FPO JennyG66
Joined Jun 4, 2020

Thu, June 04, 2020 10:11 PM

Reply posted for rbucciwhite65.

Hello! Sorry to hear about your recent diagnosis.. I would tell you "welcome"..but what is there to welcome about Crohn's?!! I'm the same age as you and I've had Crohn's disease for almost 40 years! I was very lucky as I had been in remission for almost 25 years.. hard to believe, but true... but then in 2016, it reared its ugly head... darn it. I had a blockage but overcame it quicker and I thought I had tamed it.. refusing to go back on long lasting meds.. it was short lived.. and lasted for just 4 years and here I am, back to the grueling stomach pains. vomiting, blood and the usual shenanigans of diarrhea and constipation.. anyway, to cut a long story short I'll be joining you on the journey of Humira pretty soon.. starting my first dose sooner than I would care to, sticking myself with needles, isn't what I call a whole bunch of fun! Anyway, I'm looking st this as a pit stop and hoping I'm back in remission soon. Everyone is different when it comes to foods. Some people can tolerate most things, others have a hard time. Its trial and error and there isn't a specific do or dont list of stuff to stick to. My sister has crohns also and I can eat way more things without it affecting me, whereas she has to be very careful of a lot of things... so really, only YOU will really be able to figure it out. During flare ups, its really best to eat bland foods.. give your gut time off from having to work to digest. You'll be thankful for it. Stay OFF fried foods, processed foods and eat simple. Good luck!

FPO JennyG66
Joined Jun 4, 2020

Sun, April 19, 2020 3:13 AM

Reply posted for rbucciwhite65.

Have been on Humira for 8 mths no significant change in symptoms for crohns stricture daily pain just about to start prednisone for a month hoping this will make a diffence

FPO Beno55
Joined Dec 26, 2018

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