What is it really like to live with Ulcerative Colitis?

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Patients Ulcerative colitis

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Hi Carenity Members,

I am hoping that the community here at Carenity with Ulcerative Colitis will use this forum to post what life is really like when living it with Ulcerative Colitis.

Please post your story about living with Ulcerative Colitis.

Include information that you feel would be important for a newly diagnosed person, family member, or caregiver to know.

The goal is that this discussion turns into a useful part of the forum where new users, current users, family members, and caregivers could come for helpful information regarding what life is like for those living with Ulcerative Colitis.

Through a community we are stronger.

Beginning of the discussion - 1/19/19

What is it really like to live with Ulcerative Colitis?
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Hello members,

Ulcerative colitis can affect each person differently; however, to a certain extent each person diagnosed with UC go through similar tribulations. I am tagging you in this discussion because I thought this topic would interest you and I encourage you to share your story and experience with others and to lend an ear to others.

@Memelynn@Arisuma@autumnjewel@ElizabethBluhm@UCsince1996@Kelletanner@Amethyst2@elisebmartin3@s1d934@uskat007@Loriely@Jenmcd619@Saystro@Kathy3426@Bren56@mandj67‍ 

What is it really like to live with Ulcerative Colitis?
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It is not fun! It is a disease that not only affects you physically, but also affects you mentally because of the symptoms. To control my mental depression and anxiety from this condition, I use Lexapro.

I have noticed that stress triggers the symptoms, so I try to stay stress free and exercise/yoga as much as I can.

The major impact the disease has had on me is in regard to my social life... when I was younger, I was very embarassed of the condition and would avoid social outings; however, as I have aged and got this condition more under control (understanding more or less the triggers), I have forced myself to be social. I still get anxiety about such situations and still avoid such situations, but I am working on it. 

I hope to not have to eventually get surgery.

What is it really like to live with Ulcerative Colitis?

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anyone else that can relate to this?????????? !

What is it really like to live with Ulcerative Colitis?
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@livenlaugh 

Yes, unfortunately I can relate to this! The quality of my life has deteriorated to the point that I rarely leave the house. Last Thursday the GI doc said it had become fulminant and he put me on prednisone, as a band aide, while I wait for insurance approval to start the biologics. If these don’t work, I will have to have my entire colon removed. We are just devastated and frightened. You said your UC was under control? What have you used to get there? In less than 2 years, I am in my third flare and each one gets worse! I only got this horrible disease at the age of almost 60. Prior to that, I was strong and in great health. Now I am exhausted and underweight. It has truly altered my life and reduced the quality immensely. I am so sorry we both have this to deal with.....

What is it really like to live with Ulcerative Colitis?
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@HadEnough‍ I understand this too. Leaving the house some days can really be hard. I can do it now (sometimes reluctantly) but in the beginning I was totally overcome by anxiety because I was too far away from the bathroom and had previously had accidents when I was out and about which completely traumatized me at the time (not so much anymore, if it happens then so be it! There's no shame in our game). I still haven't conquered public transportation yet but I'm getting counseling for the anxiety and panic attacks and that's helping a lot. Stay strong everyone! 

What is it really like to live with Ulcerative Colitis?
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I still find it frustrating and limiting that I'm always having to make my plans around the proximity with a bathroom. It's really annoying. Whenever I go somewhere new or go to someone's place for the first time my first question is always "where's your bathroom?". Rough.

What is it really like to live with Ulcerative Colitis?

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I think something that people don't talk about a lot is the mental health aspect. There have been a number of studies in recent years linking the gut and the brain, so if your gut is having issues, your mental health is likely to be impacted too. I think a lot of us with UC or even people with Crohn's experience depression and anxiety. At least I do in my case.