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Flare ups galore


Mon, August 25, 2014 7:43 PM

I'm starting to give up.  I feel sick more than I feel good.  I have a constant need to eat but when I do I get so much pain in my stomach.  Now a days it's starting to make the ride to work hard.  My job is very stressful (it's customer service related) and on top of that I am getting married next year.  I'm getting skinny which made me happy in the beginning but now it's just scaring me.  I've lost so much weight.  I'm trying to figure out what I can and can't eat still.  I am only able to eat rice, sweet potatoes, and chicken.  The diet is very limited.  I've only been on pentasa for a month I'm hoping that it's going to really start helping me with my symptoms.  I just turned 27 but I feel like I'm 72.  My summer has been me staying inside.  And my anxiety is through the roof.  I feel alone and there are so many times where I just break down because it feels like I'm always going to feel this way.  

FPO crohnsnewbie2
Joined Mar 25, 2014

Wed, December 17, 2014 10:38 AM

 Reply posted for morethancrohns.

Dear, chronswebie2 I'm in the same boat that you are in I feel like I have nobody to talk to about how I feel and I find myself screaming out loud at my stomach because I'm so tired of not being able to eat. I eat about the same thins you do but sometime I want some little flavor and get just a little bit of something we aren't suspose to eat how do you go out to eat just keep your chin up and get stronger hope you will keep in touch with me god bless

FPO shaunna40
Joined Dec 17, 2014

Mon, December 01, 2014 10:49 PM

 Reply posted for ohsaycanuc.

Have you tried meditation to help the anxiety? A few months ago I began meditating (61 Points) every night before bed and a different guided meditation every morning. It takes a commitment to keep it up, but I have found it reduced my anxiety significantly, which then helped my intestinal symptoms subside. I am taking a strong Probiotic daily along with several other supplements and I also drink a Metagenics shake daily for breakfast (UltraInflamX). I feel the shakes, probiotics, and meditation are helping immensely. I've also eliminated gluten and dairy and found that to help quite a bit as well. Also, the more I read and learn about diet, I believe any grains (even rice) should not be part of the diet.

I hope you find relief soon. Good luck and best wishes.

FPO morethancrohns
Joined Dec 1, 2014

Wed, November 26, 2014 7:01 PM

 Reply posted for cara46.

Hi, 6MP is not for everyone.  My niece almost died with it .  Everyone is different.  

I too am having difficulties with flares.  I am older and am not handling it well.
My job is also very stressful.  I have tried all kinds of relaxation stuff, for some
it works.

I take 4 Lialda and 1 Uceris steriod.  My doctor wants to put me back on
prednisone 40 mg.  After 20 mg I start having sight issues which he says is
more my eyesight and go see an eye doctor.  I have and there is nothing 
wrong with my eyes.

I too am looking for answers.  I asked for a Adrenal Stress Indicator test and
two doctors have said "what for?"  yet they tell me to de-stress.  I want the
test to see if the glands (on the kidneys) are too active.  It would be one more
test for process of elimination.  It's an easy test.

I would love some other suggestions.....

FPO ohsaycanuc
Joined Aug 3, 2014

Sun, November 23, 2014 4:38 PM

 Reply posted for tconley.

tconley: What is 6mp??

FPO christinec
Joined Nov 22, 2014

Wed, November 12, 2014 7:59 PM

 Reply posted for crohnsnewbie2.

Stay positive!

I am 26 years old and I have had colitis for about 3 years now. I agree with some of the comments here, stress is a big trigger for me personally. 

I have tried tons of "diets" seen nutritionist, naturopaths, western medicine and more.

I have been able to keep it in remission for over a year, but it recently came back last September. 

I understand and feel your struggles. Being a young adult and trying to enjoy your life is difficult with a chronic illness.

Sometimes i push myself to get ready in the morning just so I feel as good as i look.
Sometimes i just say Yes to everything trying to continue to be a good friend despite how i am feelings.
And yes, sometimes, i cry because i think about the negatives.

All in all, you have to be your on advocate!

What i find helps for me:
Avoid Gluten, Dairy, nuts/seeds... sometimes i cheat with the spicy - i just need a taste!
Acupuncture
Slippery Elm
Caffeine free Tea
finding hobbies to keep your mind busy
Alkaline water, foods, minerals

Hope this helps xx

For more advice visit me on Instagram: @colitisconnected

 

FPO kjbellavita
Joined Oct 16, 2014

Wed, October 08, 2014 8:47 PM

 Reply posted for crohnsnewbie2.

Goodness, i am so sorry u r going through so much. I am the mom of a newly diagnosed crohns girl. (I believe i also commented on another of ur posts) please try to lessen ur stress as much as humanly possible. Please be open with your loved ones so they understand what's going on with u. They cant help unless they r allowed in. God bless u

FPO swoods79
Joined Oct 8, 2014

Wed, October 01, 2014 6:25 AM

 Reply posted for crohnsnewbie2.

Your doctor is not treating your disease aggressively enough.  I've been diagnosed for less than 2 years, and I was started on a biologic immediately (after a round of steriods to reduce the inflammation that was causing a blockage).  The approach is to quickly try to get you into remission, using a biologic (like Humira) or an immunomodulator (like 6MP) or a combination of the two. Find a GI doctor who is an expert in Crohn's & Colitis.  The facts are that early remission with aggressive drug therapy is the most effective way to get the disease under control and get you into remission.

FPO cara46
Joined Sep 15, 2014

Tue, September 23, 2014 4:07 AM

 Reply posted for crohnsnewbie2.

crohnsnewbie2 I am sorry you are having these issues and I hope you are working with a good doctor to help with medication and food plan that is key.<br /> i was diagnosed in 2008, I have had two surgeries and I am still battling with symptoms daily. &nbsp;I&#39;m currently back on disability due to being unable to keep food down or in...I cannot control my bowels either...I truly feel your pain.<br /> i have worked at my job for almost 8 years and this past year I have missed more work than all years put together.<br /> Due you belong to a support group? &nbsp;<br /> If not, I recommend finding one they really help...not just for support but for info too<br /> if you need to chat email tovinmommy@gmail.com<br /> <br />

FPO upsidedown
Joined Jun 11, 2008

Mon, September 22, 2014 12:46 AM

 Reply posted for crohnsnewbie2.

I am newly diagnosed crohns.  I was also diagnosed Celiac.  The celiac does not always show positive in a blood test. I kept losing weight and the did a biopsy and found the celiac. Just a suggestion. 

FPO tdjmsm
Joined Sep 22, 2014

Mon, September 22, 2014 12:46 AM

 Reply posted for crohnsnewbie2.

I am newly diagnosed crohns.  I was also diagnosed Celiac.  The celiac does not always show positive in a blood test. I kept losing weight and the did a biopsy and found the celiac. Just a suggestion. 

FPO tdjmsm
Joined Sep 22, 2014

Thu, August 28, 2014 3:34 PM

 Reply posted for crohnsnewbie2.

I've had Crohn's since 2008 had 2 surgeries. I don't have any flares, I take 100mg of 6mp a day along with probiotics 15 billion adult. I also attend a meditation class twice a week. It has worked for me for a long time.

FPO tconley
Joined Mar 1, 2011

Mon, August 25, 2014 9:55 PM

 Reply posted for crohnsnewbie2.

I've been there several times in my life. I'm so sorry you're feeling that way. Pentasa never did anything for me, and if you've been on it for a month with no results, this might be a good time to talk to your doctor about some more serious meds to get things under control. If your doc isn't listening to you about the Pentasa not working, find a new one right away who will work with you. When you're feeling that sick, it's really hard to focus on controlling your diet and stress - look into some better meds right away!

FPO ria75
Joined Aug 23, 2014

Mon, August 25, 2014 8:38 PM

 Reply posted for crohnsnewbie2.

What you are going through is actually quite common.  Stress is a huge trigger and the more stress you are under the worse many symptoms can become.  Wedding planning alone is stressful, coupled with a high stress job and it can be too much. Try engaging in stress relieving activities:  yoga, walking, reading, do whatever you enjoy as a hobby, even watching a funny movie can help relieve stress.  

When my daughter was first dx, we met with a nutritionist to help her grow, she was very underweight and was dx w/"failure to thrive" she simply wasn't thriving.  It took some time, but we learned how to add the calories to each meal, have safe snacks in between and once her meds started to control the inflammation it all started to come together. She started to gain weight and grow and became happy again.

Good luck in your journey, the day will come where this will only be a memory and you will become stronger by it.
 

FPO lizzies mom
Joined Sep 9, 2009

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