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quality of life

Sun, February 28, 2021 6:13 PM

Ive had symptoms of crohns disease since I was 12 and was diagnosed at 14. 11 years since symptoms started now. Ive had very little to no quality of life since they started. Ive been treated with several medications and it goes great at first- improvements start showing then the effect wears off and the side effects stay. Im tired. Its hard to not still be mad at the years Ive lost and the years Ill continue to lose- the entirety of my life to debilitating symptoms. And its hard not to feel alone.

FPO Sarahfromnowher
Joined Feb 28, 2021

Wed, September 22, 2021 12:58 AM

Reply posted for Sarahfromnowher.

Dont feel you are alone, everyone is struggling a different battle in life that is either physically or emotionanally or mentally. I wish you the best and hope you are able to find joy even through your struggles.

FPO Diane123
Joined Sep 22, 2021

Thu, August 26, 2021 5:45 AM

Reply posted for Sarahfromnowher.

You are not alone, I'm struggling with severe and debilitating Crohn's and it's definitely difficult. I wish you the best and hope you are able to find joy even through your struggles 

Joined Aug 26, 2021

Wed, April 21, 2021 8:43 PM

Reply posted for sd2765.

Hello Sarahfromnowher,
    You were the same age as I was when I was first diagnosed.  I spent one month of my HS freshmen year in the hospital and 2 1/2 months of my senior year in the hospital.  My hospital stay my senior year ended up with me having an abscess resulting in surgery.  I had a bowel resection which, for me, resulted in 10 years of symptom free crohn's.  I am now 56 and had the same surgery again after 10 years and most recently in 2012 after 19 years symptom free.  That surgery came only after 6 years of a symptoms during a flare up and many different medications.
     I know several people with crohn's and each case is different.  For me, my inflammation was always in one isolated area and surgery was an option but it was never anything the GI doctors chose.  The first was due to an abscess.  The second one I had such extreme pain that was different from crohn's and finally while hospitalized the doctor consented to surgery.  I had a massive infection they didn't know about.  The most recent surgery, after being so frustrated with the GI doctor I went to the ER with severe pain from yet another obstruction.  The surgeon took it very serious, He made sure that I didn't need emergency surgery and then hospitalized me for a week to build me up my nutrition a little bit and then did another resection.  I went totally under the surgeons care and the hospital GI staff.  I had 8" of intestine removed and have been symptom free ever since.  I tell you all this not to scare you but to share with you that you have to know your body.
     For me, GI doctors have not been good.  They give you prescription after prescription.  If one thing doesn't work they try another.  If you have pain they give you pain medication but they don't fix the problem.  I did have some success on Humira until my insurance pharmacy changed and it took almost 2 months to get a new script and things needed to get the prescription filled.  Missing one dose caused a flare up.  I called the GI doctor and there was no rush for the necessary requirements to get the prescription.  I had to wait for an appointment, wait for the TB test to get the script plus this was happening over the Christmas holiday.
    I will tell you, you have to push the doctors for help.  If they are not helping get a different one.  If I hadn't pushed the doctor to do something when I had such bad pain, which was actually a mass of infection I wouldn't be sending this to you.  I knew it was different from a crohn's stomach pain but the doctor wasn't listening.  They don't want to do surgery and they put it off as a last resort but for me it was a temporary cure.  
    Every case is different and surgery isn't an option for several people I know with crohn's.
   I understand you feeling you have no quality of life.  I missed so many functions and parties.  It seems the stomach pain would always be at the worse time.  Going out and watching everyone eatting and I had no appetite at all.  I always lost weight quickly when I had a flare up and people didn't seem to hesitate to let me know how sick I looked.  I know where the bathrooms are in every store I shop. I went to work every day, sometimes with pain pills to function.
   There are a lot of new medicines and treatments since I was first diagnosed so you have to be proactive and find what works for you.  Don't ignore the pain.  I'm sure you can tell the difference from a crohn's stomach pain or something else.  I've learned so much over the years and have become more outspoken when it comes to MY care and no

FPO sd2765
Joined Apr 21, 2021

Mon, March 15, 2021 11:41 AM

Reply posted for Sarahfromnowher.

Hello, Many IBD patients and their loved ones find support groups to be a valuable resource for information, support and guidance. If you would like information on support groups you may visit Our in-person support groups are currently virtual due to the pandemic, so it may help to reach out to the facilitator to determine the eligibility to participate.
I also think that you may find it helpful  to consider joining the Power of Two program, now with its own app! Power of Two is a Crohn's & Colitis Foundation support program that connects patients and caregivers facing challenges brought on by living with IBD. Using the app, you can securely connect with a peer supporter who has had similar experiences with IBD via calls, messages, and community posts. To learn more and connect with a peer supporter, visit . 

If you have further questions or need more information regarding our support programs, please email or call our toll-free number at 1.888.MY.GUT.PAIN (1.888.694.8872), Monday through Friday 9am-5pm EST to speak with an information specialist.

FPO administrator
Joined Oct 12, 2017

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