How do You Deal with this Chronic Disease Mentally?

Zoe near the ocean

Zoe near the ocean

Intro:

I like being outdoor, freedom, and I’m from Canada. Lately I’ve started to go to gym/exercise regularly, doing some yoga and walking outdoor.

I’ve been reading this site for a while now. I’ve been diagnosed with ulcerative colitis for 2 years now. Currently on imuran and salofalk enema every night. Overall, I would say my symptoms are under control. However, I do notice every once a while ( maybe every 1 weeks or less) I have urgency to pass large amount of purulent ( light pinkish) drainage with trace of blood per rectum with foul smell. Does anyone have similar experience ? I think this is form of mucus, and possible a sign of inflammation at the rectum area ? any thoughts or suggestions ?

My Story:

Anyone how they cope and worked with their disease ?
My main concern is everyday is so different so predictable.
I am currently not working due to this disease is not under control.

I know all the reasons to become positive and not to think about the down side, but it’s my own body, my own health. I didn’t realize I could have a chronic disease until this hits me so hard and almost broken me apart.

I am currently eating mostly digestive foods ( always cooked, and make lots of purred soup ( with carrots, yam, green vega, etc), but i don’t know when my body may have another uncontrollable discharge or when i may fail my current medication treatment plan. I really don’t want to try the IV infusion option or think about remove the large bowel is horrible too

Maybe you can share how do you deal with this chronic disease mentally ? Besides talking to close friends or family, what have worked for you to mentally relieve yourself ? Try to get used to the new “version ” of self, accepting this disease and be yourself again.

Last, regards the diet, has anyone been on diet control only, without any meds, how long is your success rate under remission ?

From what my GI doc suggests, once you are off from med, you increase the chance of having flare up. Although I understand i probably will take med for the next few years depends on my condition, i would like to hear how others cope or their bodies responses with/without meds.

Last, I hope my message will be posted on web, so I could get some feedback and encouragement from the crew.

Many thanks. Hope to hear from you soon.

written by Zoe K





4 Responses to “How do You Deal with this Chronic Disease Mentally?”

  1. John T.May 25, 2014 at 9:36 am #

    I haven’t had that problem since I went on 6-Mercap and have been in total remission for more than 10 years with no symptoms of the disease. I take 50 mgs of Mercap daily. I wanted to get off Mercap but my doctor says don’t do it, UC surely can return.

  2. Majeed AldamahMay 25, 2014 at 9:01 pm #

    Hi Mom
    That sweet speech
    But it is not easy to live with pain specially at digestive system because you can’t
    able to eat the food that you mentioned at your article ,but your system forced you to eat spicific foods that you don’t like it, so you can’t mently control!!!!
    Any how good luck and happy time

  3. CorboMay 25, 2014 at 11:21 pm #

    Hi Zoe,
    I found having a strong support network and developing consistent routines worked best for me. That way I was able to plan bathroom visits ahead of time, particularly if I knew I wouldn’t be able to leave somewhere urgently. Also, I discovered that writing about it helped.

    In addition, I found that informing others about my situation was a good way for me to begin to accept what was happening rather than constantly fight myself, which is exhausting. It was uncomfortable to talk about at first but I became gradually used to it. You don’t have to give people any intimate details either.

    Unlike your case, I pretty much responded the same way to all foods regardless of how they were prepared. I was also unresponsive to all the medications I was prescribed and opted for surgery. Safe to say it’s given me my life back, completely.

    All the best!!

  4. KristenMay 30, 2014 at 8:23 am #

    Hi Zoe,
    I completely relate to your concern about the unpredictable nature of the disease! I really cannot figure out why some days are better than others, I’ve tried food diaries and keeping tabs on my stress level. But, it seems my symptoms change for no apparent reason.

    Coping is very difficult. Currently, I have 10-15 trips to the bathroom daily, and at times I don’t make it. I got upset yesterday because I attempted to go to my friend’s birthday, but left before she got there because I just didn’t feel good. I felt like a bad friend, but I should be easier on myself because of this chronic condition. It is just hard, because I don’t think she understands why I left.

    I cope by talking to my friends and family about it. I found that some friends “get it” while others don’t. It is very hard when they don’t get it, but it isn’t their fault- they just don’t understand. I go to the friends and family that do understand and talk to them about it. I also focus on positive affirmations, like “I am so strong for going through this.” “This is making me a stronger person.” “I can be at peace despite this pain.” “I am fortunate to have such a loving family.” There are always things to be grateful for. But, at the same time, I try and give myself time to grieve, because this is very hard! It is ok to be depressed and unhappy at times- it is a very difficult thing to go through. Sometime we are way more mean to ourselves than we would be to our best friend, but this shouldn’t be the case. Sometimes, if I have a negative thought like, “You are being so ungrateful,” I say to myself, “would you say this to your friend?” And, no! I would never say that to a friend, I’d find a nicer way to say it, like “try and focus on something positive.” Also, going to support groups, or reading a page like this can be extremely helpful. It’s like ahhhh, finally a place where I feel understood. Like reading your post made me feel better.

    Good luck! I wish you good health!
    Kristen

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