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Ulcerative Colitis
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Posted 5/2/2016 2:55 AM (GMT 0)
Hi,
I just posted a technical question, now I have a more emotional question.

I am having trouble wrapping my head around having and dealing with UC for the rest of my (hopefully long) life. The idea of thinking and worrying about it this much forever exhausts me.

What good techniques do you have for coping? Any great books about dealing with chronic illness?

I had thyroid cancer when I was 29 and was worried that I would never get over the worry of it and dealing with it, but now, truthfully, it seems easier than colitis.

Thanks for listening.
Posted 5/2/2016 1:11 PM (GMT 0)
A new uc diagnosis is quite a head-trip, a lot of new things to cope with and learn about all at once. Most of us live nearly normally, so have hope that things will get better. The easiest way to cope with uc is to have it well managed through an appropriate treatment plan, have it impact your life minimally through a solid remission. If you can forget you have uc, then it's no bother at all. When we're flaring badly uc is extremely difficult to cope with, we can be housebound and in complete misery.

Coping with chronic illness is something we all struggle with to a degree (how it will impact our future, when symptoms will suddenly reappear) and coping is hardest when uc symptoms are plaguing us the most with anxiety and depression hitting us hard. There's no easy button, and no simple way out. I find it helps to have an escape when uc gets to you. Some practice meditation (ohm), yoga, delve into music or reading they love, etc. I find reading and posting on healingwell helps, knowing others understand and experience the same trials and tribulations to be beneficial. Vent here when things aren't working, we all do. Perhaps you'll get some new suggestions to try as a result. If uc worries or anxieties become overwhelming then seek out counseling, therapy, or anti-depressents. It's not easy living with chronic illness and at times we all need a helping hand. You just can't worry about your health 24/7 and remain sane.

Try to learn everything you can about your uc and become your own best advocate for what treatment you need to have the best quality of life. Having some control and understanding of over your treatment plan helps. If things aren't working, suggest and try new things, until you find your solution. It's taken some of us a few years to fully control our uc, and every solution is individual.
Posted 5/2/2016 2:49 PM (GMT 0)

MurielM said...
Hi,
..... The idea of thinking and worrying about it this much forever exhausts me. ...

I think you can benefit form cognitive-behavioral framing. This sucks, but avoid awful'izing.

As you get UC better managed, hopefully you will not have to think this much, and as you get better about taking care of yourself, it will not be as exhausting.

As new therapies come out for UC in general, and as you gain knowledge about things that help/hinder your symptoms, it will likely not be forever.

It sucks, it can be exhausting emotionally and physically, and it does not go away in a few weeks or months - but it will not likely be forever, and for many it gets better. Even the small percentage of people who have to resort to surgery generally report they are very pleased with the result and consider UC behind them.

try to take it week by week, of doc visit by doc visit ...

good luck
Posted 5/2/2016 3:24 PM (GMT 0)
One day at a time. That is better than thinking and worrying about the rest of your life with UC. So many other things than UC may affect your life, both positively and negatively. In the beginning UC takes up a lot of mental and emotional space until you get it sorted out and compartmentalize it so it is not the biggest thing in your life.

Once you are out of the "denial" stage into "acceptance" which took me a long time, UC is just a passenger in your life bus not the driver. It just takes time.

If you cannot get symptoms under control to the point that UC is using all your time and energy then it's time to think about surgery. This could take years or it could be a faster decision. Depends on your choice.
Posted 5/2/2016 3:43 PM (GMT 0)
imagardener2-

well said about moving from denial stage into acceptance stage. Ipoop advised me about the same and the quicker I accepted the fact that UC is part of my life and need to adjust and accomodate with it (lol) made me more confident and less stressed.
Posted 5/4/2016 1:57 PM (GMT 0)
Thank you all for the support and advice. It is all great and I do need to remind myself of it (day by day, etc.) especially at night when I have trouble sleeping. Luckily I have 3 little kids and so in the day I tend to be busy and able to not dwell, but nighttime is different.

I guess it really is just something I will have to get used to and adapt to. I think I am still wavering between denial and acceptance.

A journey indeed.
Posted 5/4/2016 2:06 PM (GMT 0)
I was never good at coping with having UC. The frustrating part for me, was knowing that even if I was feeling well for months or years, it could creep up at any moment. I took anti-anxiety medication for a while, and saw a psychiatrist, and the medication definitely helped a little, but it wasn't a great solution. I was kind of numb to the negative thinking. I think once you get into a long remission and you have a good hold on what works for you, you will gain confidence in knowing the future can be managed. I guess it just takes time and stability. Most people with UC are able to manage it very well with medication and do not have constant flare ups. You will be okay.
Posted 5/4/2016 2:12 PM (GMT 0)
"Most people with UC are able to manage it very well with medication and do not have constant flare ups."

I have heard this. That 1/3 of people have it very mildly, 1/3 a little more severe and 1/3 have it qutie badly and will require surgery.

Healing well seems to be a great place, but I guess it also has a higher percentage of people who are having trouble coping with their UC, would you say that is true?

I then get a picture of 100% of people with UC suffering terribly.

The same thing happened before I got my thyroid removed (cancer). If I googled too much, it sounded like life without a thyroid would be terrible, filled with misery and side effects. However, so far mine has been pretty good.

I think "you will be ok" will be my new mantra.
Thank you.
Posted 5/4/2016 2:22 PM (GMT 0)
At first it is hard to cope with and accept. The best advice I can give is just take it one day at a time. You will make it. The hardest time for me was when I was in the Hospital for a week and the only thing to do there is just think. For me my future plans changed literally overnight and it was difficult to accept but my only option was to accept that it happened and move on.

You will be fine and this forum is great for any questions you have.
Posted 5/4/2016 3:17 PM (GMT 0)

MurielM said...

Healing well seems to be a great place, but I guess it also has a higher percentage of people who are having trouble coping with their UC, would you say that is true?

I think that is accurate. We have some users who manage really well and have for years with mesalamine, probiotics and diet too. They probably just post in a certain threads and the people who are struggling with heavy-duty meds post in others. It's good to pop around and get a good balance. If you only read worst-case scenarios, you will get a picture that everyone is suffering without recourse. The great thing about HW is that there are people who have run the gamut, and even in those dire circumstances, we are okay. Of course it's not something you want to imagine, but it's pretty much the worst case. So try to keep your chin up, that's not going to happen, you will be okay smilewinkgrin
Posted 5/5/2016 12:02 AM (GMT 0)

MurielM said...
I have heard this. That 1/3 of people have it very mildly, 1/3 a little more severe and 1/3 have it qutie badly and will require surgery.

More like 1 in 5 for the last one. Surgery rates for UC vary according to what sources you check - anything from 10-40%. I dunno where the 40% figure has been plucked from, but there's absolutely no way 40% of people on this board have had - or will have - surgery, and internet forums tend to attract the more severe or refractory cases by their nature. Also surgery rates are based on older studies; we won't get a true picture of the current surgery rate for another decade or two.

My IBD has been an absolute horror show but I think that - as with everything else in my life - I've just been amazingly unlucky. I've a brother who's had Crohn's (in the form of proctitis) for longer than I've had it, and his has been piss-easy to manage. Also had a cousin with Crohn's (she tragically died of cancer) and she seemed to live a pretty good life as well, going on lots of trips and so on.

Actually now I re-read that, I suppose I am luckier than the cousin, to be fair.
Posted 5/5/2016 12:22 AM (GMT 0)
Muriel I know exactly how you feel. I am 34 just gave birth to my third child. Was diagnosed during this last pregnancy. Before I got pregnant, just last summer, I was so active. Constantly working out, I'm a physician (radiologist) and was balancing work and life and being a mom.

Cut to now, if I didn't happen to be on maternity leave right now I would probably be on sick leave anyways. The hell that is taking care of a newborn and flaring is so hard I can't even imagine running errands, driving, working out. I am throwing away money at nannys and my husband taking time off to help me through this one but it's a bad one. What's helping me cope is this forum and seeing that people have been in this dark place where I am now and have come out okay. It gives me hope. I wish I was saying it's the help of my loved ones but somehow that just makes me feel worse. I'm used to being the one everyone leans on. I hate leaning.
Posted 5/5/2016 12:25 AM (GMT 0)
Hi Muriel -
That 1/3, 1/3, 1/3 thing was certainly the wisdom that was spoken of when I was diagnosed 30 years ago!
Folks have given you great responses; a couple of things occurred to me.
One is that, yes, it is difficult to wrap one's head around a chronic illness. I was dx'ed early in my marriage, before kids, and I remember crying and thinking I wouldn't live very long. In fact, I was only "really" sick (sick enough to miss work, be hospitalized) at the onset of the UC. Since then it has been manageable. If someone asks me, I answer them that I am in general healthy; I allot UC a very small amount of my brain space. And, OK, I have been relatively lucky. Since UC I gave birth to my 2 boys, who are grown now; I have resumed a professional career which involves public speaking; I took up horseback lessons for 5 or 6 years, etc. Life has been good, UC or not!

Secondly, I imagine the folks who post here are indeed ones with more issues. Why else would someone spend the time looking for this forum and participating in it? It's sort of like, when I was reading reviews of computers, thinking of buying a new one, only the people who'd had problems with them had posted reviews!

I highly recommend using the "search" button at the top right to research meds and experiences. And, I am sorry for your diagnosis, but welcome to the conversation!
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