Patients Ulcerative colitis
What is it really like to live with Ulcerative Colitis?
- 165 views
- 12 times supported
- 12 comments
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.
All commentsGo to the last comment
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
See the responses
@Lee__R I suffer with UC for almost two years and I find it sometimes it controls my life because I need to be close to a bathroom. I get the feeling of needing to go and nothings out or it comes out fast. Add to the fact I also suffer with Over-Active-Bladder (OAB) I feel I have lost control and end up getting depressed. I have been on antidepressants but I still feel like I have no control or lost control of my bowels and bladder. I do have some good days but not too many. I wear diapers and pads that help but I have to change myself often. I am on medication. I went through Urodynamics and was put on a medication but it did not help me as it does for others. I am tired of having surgeries, I don't know what else is left I can do.
See the signature
Hide the responses
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.
anyone else that can relate to this?????????? !
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.....
See the signature
@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!
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.
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.
@blvngiseasy Oof yes. Chronic illness can be very isolating, so beyond the biological/gut thing, I think you can really see how it could affect you mentally.
@blvngiseasy Yes! I've seen how my son struggles and I've been worried that he's developing depression. It's hard to have this period, but I feel like it's just hell for him at an age where you just want to blend in...
Living with UC is so challenging. It does affect you physically and mentally. The mental aspect is huge.
Today I am experiencing a bad flare. Fatigue, joint pain, emotional, on top of all the bathroom runs and what accompanied those bathroom runs.
I am on my fourth medication attempt. I did great in the beginning but now I’m flaring while I’m on the medication. So, I’m beginning another round of prednisone (round #4 this year).
I truly feel for what your son is experiencing. This disease is no fun. There are good days and bad days. And the bad days are bad.
Give your opinion
Members are also commenting on...
Articles to discover...
07/02/2022 | News
01/28/2022 | News
02/12/2019 | Advice
04/08/2019 | Advice
05/13/2019 | Advice
05/19/2017 | Testimonial