Community Forum

I'm so happy I found this forum, because recently diagnosed with UC can make you feel incredibly lonely. I was diagnosed in November, 2017 and it was manageable until I contacted C-DIFF from a fellow employee and now everything is back to where it started. Sadly, I have to stop by Humira injections until the C-DIFF goes away....it's so disheartening.

My question is how do you keep your head high and try to keep a positive attitude when the disease can be so humiliating. I feel a prisoner to my home, because I have to be near a bathroom at all times.Also, how do you manage being off from work (using of sick days) and not worry how the bills wlll be paid. Is applying for short term disabiilty a possibilty with this disease? Is it a hard process to go through? Also, how do you maneuver having an accident in public?

Any advice is appreciated!  I'm just realliy overwhelmed by this new diagnosis. 

Thank you,

Reply posted for klauden.

I would say .. if you just come out and talk to people about it.. you won't feel as lonely .. you'll quickly realize that there are a lot of people dealing with a similar issue .. maybe not crohn's or colitis.. but possibly Celiac .. I met a lot of folks at work and throughout my life .. when I stopped hiding the disease 

Reply posted for klauden.

I'm so sorry to hear your story!  This is not pity, this is sympathy!  I was diagnosed in 1991 with Crohns: 4 surgeries, 2 bowel perfs, C-diff, a total hysterectomy, 8 years of steriods, 7 years or remicaid/immuran, and an ileostomy (now reversed), I'm here to tell you YOU WILL GET THROUGH THIS!  I have been in remission for 15 - YES 15 years!  Only now am I starting to have some symptoms of possible relapse.  Here are my life lessons!

1.) YOU have UC, UC  does NOT have you!
2.) Think for YOURSELF, don't let UC think for you!
3.) It's poop, it all stinks (some more than others) and we all poop and FART!  Yankee Candle makes a small can of room spray (tiny), fits in your pocket!
4.) You have ONE choice - TO GET THROUGH IT!
5.) There WILL be difficult days/weeks/ or even months - That's life!  Life is NOT easy!  Accept that and  you're on your way to finding your happiness again!
6.) Don't give UC your joy, because then UC is in control of you.  Why give this disease that much control?
7.) When life gives you lemons, make some kick ass lemonade!
8.)  You get to CHOOSE the impact on your spirit, your joy, your happiness!  Don't let UC choose for you.
9.) DON'T feel pity for yourself, have sympathy for YOU and talk sweetly and lovingly to YOURSELF.  (Refer back to #2)

YOU will be ok!  YOU WILL BE OK! 

Reply posted for klauden.

I have crohns and I recently started drinking organic chicken bone broth low sodium mixed with chicken noodle soup (50/50) and it has changed my disease so much NO MORE AWFUL SMELL WHEN IN BATHROOM AND NO MORE BAD SMELLING GAS AND NO MORE DIARRHEA. This stuff is truly amazing and I only drink it maybe once or twice a week. 

Reply posted for klauden.

Some advice for everyday living with UC: whenever you go somewhere hit the bathroom before you leave and the hit the restroom when you arrive, and again before you leave.  Consider wearing Depends or panty liners all the time.  Buy black underwear, and only wear black or blue pants.  Always know where the nearest clean restroom is.

Reply posted for Lynda Lynda.

Did you ever consider surgery to fix the UC problem? I have constant diarrhea, now, even after get a free light saying my c-diff is gone. I can’t live tied to my home, because of diarrhea and will opt for surgery if it’s a possibility. I am a teacher and don’t want to be on disability already. Thanks for responding to my post.

Reply posted for klauden.

I had C-diff in 2015. A stool test confirmed I had the C-diff. I was treated with an expensive antibiotic called Vancomycin. I have suffered with UC for 20 years. 20 years of diarrhea with only 2 short periods of constipation. Because of my UC, plus other health issues, I am collecting Social Security Disability benefits. At work I was constantly in the bathroom with watery diarrhea in addition to feeling naseua and sometimes I had dry heaves or vomiting. This disease has certainly has taken a toll on my psychological health. People need to start talking more about Inflammatory Bowel Diseases in addition to the Depression that comes along with it. Lynda

Reply posted for klauden.

Yes, I’ve learned over the years, with both UC and Crohn’s, if you wait till you feel the urge, it’s usually too late.  If you want to stay ahead of these diseases, you have to plan ahead.  Always plan ahead.  I know where every clean restroom in my town is.

Reply posted for klauden.

Klauden, I have worked as a caregiver for 15 years now and i know how offensive the smell of C-Diff can be when somebody affected by it has been in the restroom. This plus the frequent rush to the toilet/bathroom can be quite an embarrassing situation. When I was in London 6 years ago, a well respected medical doctor once said, " If the doctors of today do not become the nutritionists of tomorrow, the nutritionists of tomorrow will become the doctors of today."
I thought I could help sharing something on nutrition. 10 years ago I was introduced to stabilized Aloe Vera from Arizona, USA by a trusted friend. I was living in the UK at that time. Soon I found out that there were a number of people in my community who had been introduced to that supplemental drink. So I  turned to this miracle drink as i was constantly getting constipated and was low on energy frequently. It really helped me and still use it from time to time but my problem seems to have gone at least in the last 5 years so maybe you want to look into this. You may probably have heard of the health benefits of aloe.
By the way stabilized aloe vera is generally not available in local stores most of the time, because it is prepared by a unique stabilization process which enables it to maintain its original quality. And because of this mostly it seems to help with most digestive issues and has been known to deal with inflammation and swellings effectively. This is the website for you to go to and see if this may suit. It is recommended that you drink the aloe every day , each morning before taking food. You can take at least 2 ounces with your favorite juice or with water as the taste can be a bit challenging. Do this for 3 months although some people report an improvement early. all the best.

Reply posted for Mudhound.

Thank you for the encouragement. I need to remember I WILL get through this. You brightened my day. Thank you!!

Reply posted for charbs.

Thank you so much for the great advice. Using the bathroom even when I don’t have to go is excellent advice💗

Reply posted for klauden.

C DIFF can usually be knocked down by a couple of weeks after strong antibiotics.  With the UC my routine was hit the bathroom whenever you are leaving home, and again as soon as you get where you are going.  Then  when you are leaving that place.  Hit the restroom again.  Use panty liners or depends and only wear black or dark pants.  Opioids will bind you up and your doctor can proscribe one for you that won’t get you hooked

Reply posted for klauden.

I’m new here myself.  However, I have battled UC and C-dif and they are 2 completely different animals. 
Boy I know about missing work!  I am self employed and ONLY get paid when I am productive.  I have missed out on a lot over the past 27 years. 
Hang in there!  It will get better.