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Shock of diagnosis

Fri, May 07, 2021 11:55 AM

Hi everyone,
I have very recently been diagnosed with ulcerative colitis. I had what they call a "flare up" and was admitted to hopital. I was in for 10 days had IV antibiotics my abdomen was so swollen another paitent asked me when my baby was due :-( Ive recieved a colonoscopy and serveral large ulcer where found. I havent start treament yet Im am due to start next week after meeting with consultant. IV community nurses have introduced themselves to me also.
I want to ask people how did you manage with this first stage? I feel as if my whole life is upside down. I can barely go out due to days of constant diarrhoea. Sometimes 10+ times a day. im having good days and bad days at present 50/50 amout of the time. All my symptoms have come on really fast. Joint pains are bad. Sore achey eyes.
Im keeping food diary at present im finding alot of foods cause pain and diarrhoea.
Can anyone help with advice? 
The impact on my life is severe and im struggling to come to terms
I will add that my symptoms have incrementally increasing over the last 6 months
Aneamia HB 10.2hmg (Struggling to improve despite taking iron meds)
On and off fevers 
increased HR
Eye pain
High crp in blood tests
Does anyone feel as if a switch went off one day and your body has now completely changed?

Any suggestions welcome 
"Good days and good nights to all"

FPO Tuttsy
Joined May 7, 2021

Tue, October 19, 2021 2:26 PM

Reply posted for Tuttsy.

I am not a doctor, but this has been my experience.  I was diagnosed with Crohns Colitis 2 years ago and Enterpathic Arthritis a year later.  They go hand in hand, and the arthritis can become extremely crippling and painful.  During your flare-up, do you get prescribed prednisone?  It works like magic for me.  It is only a short-term solution, but it should get you feeling normal fairly quickly.  This current flare-up I'm having is mild, but after my 10 day prednisone treatment, I will be taking Budesonide for 4 weeks.  I also take Mesalamine for the Crohns and Azathioprine for the arthritis.

FPO apd2work
Joined Mar 12, 2019

Thu, September 16, 2021 2:58 AM

Reply posted for Allison.

I was diagnosed with UC at 14 and now, at 46, can definitely relate to your situation. I have joint pain almost all the time, even when I'm not in a flare yet those same joints look good on x-rays. My hands and feet are the worst. This is apparently par for course for some of us. Your experience with significant fatigue is totally normal. My advice is to find an excellent GI doctor, maintain a strict UC-friendly diet that works for you, and engage in regular exercise that doesn't exacerbate your symptoms.

FPO Dusman
Joined Sep 5, 2021

Sat, July 24, 2021 6:28 PM

Reply posted for Tuttsy.

    I can relate to this experience. I was diagnosed in 2016, but I didn't take it very seriously at first because I was in denial. Unfortunately, UC hospitalized me in 2019 and I was unable to intake any water or food. I too had an IV sustaining me. While I had been sick before the hospital stay, I thought (as I usually do) that it is a mind over matter thing and that I could just push through until I felt better. Predictably, that was not that case. It seemed like a switch. One moment I was playing soccer and working a ton of hours and the next I was incapacitated in the hospital. It took friends, family and faith to get through these trying times. The uncertainty of not knowing when the switch will flip the other way was also grueling. But I was finally discharged and able to start the long, slow recovery process, which was a single trajectory of steadily feeling better. There were days when I felt worse than when I did in the hospital. But eventually, I headed in the right direction.
    My advice, is to find a good GI doctor. They are absolutely priceless. It should be someone you are comfortable with. Someone who you can discuss options with. Someone that listens to all of your concerns. I ended taking Humira, but not after I discussed it with my doctor and voiced all of my concerns. He was kind enough to patiently and honestly answer all of my questions. While GI doctors are not an automatic cure, they understand the disease better than most and can give you as much support as possible. 
    Most importantly, don't lose heart!

FPO Allison
Joined Jul 24, 2021

Tue, July 20, 2021 10:43 AM

Reply posted for Tuttsy.

I was diagnosed withUC june 15th, and am still trying to process this disease and how it is affecting me.  My symptoms were several bouts of pooping about 5 times a day for close to 3 months.  I then had a colonosopy and had severe damage to my colon and bowel.  I then went into remission and was down to one bowel movement a day.   I just started enyyvio only one infusion so far. So far dry eyes and feeling tired and 2 bowel movements a day.

FPO janis true
Joined Jul 18, 2021

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