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How to keep strong emotionally?

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Ulcerative Colitis
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Posted 7/13/2015 3:17 AM (GMT 0)
Hi, I am hoping for some guidance on how to be more resilient about other people's comments. I have been in a flare for eight weeks and off work for three as the symptoms got worse during my menstrual cycle. I am really trying to be positive, I was told two weeks ago that I now have sub total colitis not left sided colitis. It started off as proctitis in 2009 and escalated in 2013. I still feel quite scarred from that experience as the hospital would not take me seriously and investigate for about ten months. They told me it was just stress or ibs and I missed work for three months and then got bullied for about twelve months on my return as my employer is notorious for sacking people with any kind of long term illness. I am due in hospital tomorrow and felt distressed tonight when someone told me I should go back to work and that I would have to go back some time and that it would help to keep active. My urgency is too much to risk work and I have no energy. My bms are about 8 a day now so could be worse but I am not in the place where I can just leave the house for very long. It has made me feel quite desperate. I explained more how ill I am but it has left me feeling devastated. How do I keep strong at these times?
Posted 7/13/2015 3:26 AM (GMT 0)
You take one day at a time and remind yourself that you are doing the best you can with a bad situation. Your health comes first and you must be selfish and take a hard line with people when they trivialise your situation with ignorant comments. UC is a serious illness which deserves to be treated as such. There is no quick fix or short cut around it and your employer needs to listen to and understand this. Surely there are laws that require that of them?
Posted 7/13/2015 3:28 AM (GMT 0)
I think you need to try to think positive. I don't know what medication you have tried but there are probably a lot of other medications available. Some people get many years out of medications. Some people do well indefinitely on some of the options. Try things and see how you do. You could be in remission not worrying about symptoms. Why suffer?
Posted 7/13/2015 3:41 AM (GMT 0)
Everyone's situation is different. I don't want to belittle yours but many of us have worked during our flares of even more than 8 X/day. I worked when I was going over 20 X/day but I admit my circumstances make working with UC easier than most.
Posted 7/13/2015 3:56 AM (GMT 0)
at the worst, I managed to keep working with diapers for about a month. but I had a desk job.

when you get a chance to do some long range planning (after this flare) try to find a job with good insurance and lots of sitting.

it sucks, but we have to deal
Posted 7/13/2015 6:59 AM (GMT 0)
I think a good support system is key. If I was to play arm chair psychologist for a moment - I think you are far less bothered by the 8bms/day (yes, jealous!) then the fact that no one seems to be understanding what you are going through. And part of getting a good support system is building it yourself. You really do have to educate family and friends on this disease so that they understand how to support you.

For example, it took my sisters about a year to stop making comments that I was so "lucky" to have colitis because it keeps me thin. Now they know when they make comments like that, I may break out into hysterical crying so they don't do it. (btw, not recommending hysterical crying.) I also have a best friend that I can call up on really hard days and she will tell me her best poop jokes. (sounds puerile but I start laughing and then feel better.) And yes, there are days that you may need to throw a pity party, have a good cry, and then pick yourself up and move on.

What I am saying is you can't expect an employer (especially) to understand what you are going through. Don't look for empathy from employers, acquaintances, Facebook friends, or anyone who is not in your inner support circle.

And yes, a good supply of diapers helps too.
Posted 7/13/2015 11:21 AM (GMT 0)
I understand how awful that must feel. You KNOW you're going to have to go back to work eventually, you don't need anybody to keep constantly reminding you of it when they just don't know what you're going through (and don't let anyone here make you feel like 8 bms a day isn't a big deal either - it is).

In my experience, when people make comments like that, it hurts mainly when you feel there may be a modicum of truth to it. Once you acknowledge to yourself that what you're going through is serious, and when you genuinely believe you're doing the best you can, it will matter less what stupid uninformed people have to say, for you will know yourself that they are just plain wrong.
Posted 7/13/2015 2:11 PM (GMT 0)
Sorry you are having a rough time! I felt quite desperate too during my worse flare, which was only "moderate." I was in the restroom 10x/day and worked the whole time. I had accidents at work and carried a change of clothes in a bag. :-( I told virtually no one, but felt very misunderstood by the few I told. My own mom thought it was IBS. I tried to tell her otherwise. Ironically, she complained as if she was dying last summer when she had 1-2 days of diarrhea. >:-( It really wears on you emotionally when it is prolonged, even if the symptoms "could be worse." You might consider seeing a therapist if you feel depressed or need more support. Chronic illness can wear on a person. We all have different levels of what we can tolerate. I am now in what I would call a mild flare. But when I found out I had UC again after nearly 8 years remission, I cried. It's okay to feel sad about it. But try to get help if you feel you need it emotionally. Sometimes we need it to get through.
Posted 7/13/2015 2:21 PM (GMT 0)
If you get bullied upon returning to work, report whoever is bullying you to your Human Resources department.

As far as people making rude remarks about this disease......I ignore them. They are ignorant and deserve none of my time or any explanation.
Posted 7/14/2015 6:41 PM (GMT 0)
8 times a day might not seem like a lot to some people, but it's still debilitating when you have urgency. I used to go that many times and it took everything in me to just get my son to school 5 minutes away. I hated leaving the house. Just have hope it will get better because it does for a lot of people. A short course of prednisone jump started me out of my last flare. Then I used Lialda and Canasa to keep me stable. The final step that has gotten me back to normal is diet. For me that was the missing link. I feel so much better since cutting out grains and sugar. It's hard at first, but I don't even think about it now.
Posted 7/14/2015 7:48 PM (GMT 0)
Well yes I can see why you're upset and you have every right to be, it's bad enough some people with IBD have the same attitude as some without IBD even. So big whoop, some people with severe IBD still manage to work more than 8 hours a day, yay, good for them, I'd really like to know how in the hell they pull that off, but it's been said so it must be true.

My advice to you, is to tell them right where they can go and if they don't like it then tough crap for them because they clearly don't know what it means to have empathy so they don't deserve any respectful response....that's my opinion.
Posted 7/15/2015 12:48 AM (GMT 0)
Does your hospital have a pain center or a therapist who specifically works with people with chronic illness or GI issues?

While searching for a therapist with expertise in chronic illness, I actually stumbled across my IBD office's pain center, which has therapists and psychiatrists who only work with IBD sufferers. The therapist mostly helps with things like self hypnosis, while the psychiatrist has given me anti anxiety meds to help with the panic attacks I get in relation to my symptoms. They also gave me recommendations for a new doctor when I expressed frustration that my old one hadn't taken my experience seriously.

Having supportive family and friends is, of course, vitally important, but I've found that having a team of supportive professionals has saved my sanity.
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