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Mental toll of uc

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Ulcerative Colitis
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Posted 10/6/2013 5:44 PM (GMT -5)
I think I am finally feeling the toll of this disease and am thinkinking about going ahead with the surgery. Just feeling like I can't take it anymore. I have other stresses too, but the uc keeps me from doing what is best for me. I actually think I need to talk to someone about the way I am feeling. I just don't enjoy anything, and feel sorry fo myself all the time. Then I take it out on others, not to there faces necessarily, but in the way I feel about them or their happiness. Of course Facebook does not help. I have had three accidents in the last 5 days. I have an appt. with GI on Tuesday so that is good. I have tried to live with it and adjust my outlook, but I am negative about everything now. Just wanted to rant. I even feel self conscious on here now, about my rep,ies and everything. Not being a good typist makes it hard to get across everything I want to say, or do it well. Anyway.... I know we all have to deal with this, so hard though.
Posted 10/6/2013 5:57 PM (GMT -5)
Yeah the mental aspect of uc is the toughest part of it. Uc is a constant worry, am I done pooping today, will I have urgency when I leave the house, what if I have an accident and can't make it in time, etc. It's something that we face alone, with no preparation: embarrassment, worry, isolation, and crying when things just seem hopeless. Here atleast we understand.

How bad are your symptoms; have you tried all of the meds?
Posted 10/6/2013 6:04 PM (GMT -5)
allswell: I think you said it rather well. I think the time has come for you. To be honest, I think it is really stupid for some people to torture themselves for years and even decades when they could just get it all over with and get their lives back. Almost everyone who has opted for surgery usually says they have one main regret - not doing it sooner and living all that time with all those horrible symptoms and all those side effects from all the dangerous drugs they took, trying to keep a worthless organ that was never going to get better.

For those who want to say that I talk the talk but do not do the surgery myself, I do better than most with my only symptoms being frequency and urgency and I have achieved having only those symptoms without having to take any dangerous drugs. I did just start prednisone a few days ago but it will only be for a few weeks. It either works or it doesn't. There will be no increasing the dosage back up if my attempted remission disappears.
Posted 10/6/2013 6:08 PM (GMT -5)
Just wanted to say I understand and I'm sorry you are feeling so poorly. You have been thinking about surgery for a while now...I know you have tried a lot of things. I was in a very bad place toward the end before I had my surgeries. I couldn't even leave the house because the accidents were so frequent. Once I made the decision it was like a huge weight was lifted off my shoulders. I don't know what else to say other than you really do have to get to that point where enough is enough. Hang in there.
Posted 10/6/2013 6:40 PM (GMT -5)
I think one of the sickest ironies is that the people who need talk therapy the most are the ones who can't leave the house to get it. I know I was there too. I wasn't able to start therapy until after my first surgery and it has been hugely helpful for me. Even though the vast majority of my UC issues have been resolved by surgery, I am still feeling the psychological effects and the aftermath of the surgeries themselves. I highly recommend talk therapy to anyone suffering from IBD regardless of the severity.

If it's time it's time, I wish you the best.
Posted 10/6/2013 7:47 PM (GMT -5)
Everyone has a limit of what they can deal with and having surgery could be the best thing for you. As long as you aren't expecting surgery to fix non-UC parts of your life.

Not having control of our bowels is the same as not having control of our lives.
Hope you find a therapist who has experience with chronic disease and the stress it causes.
Wishing you the best.
Posted 10/6/2013 9:49 PM (GMT -5)
Thanks, I recently considered that, ...my mental state might make it difficult to handle the ups and down of surgery. I agree talk therapy would be good to start soon, before surgery, not that I will use that as another excuse to wait, though. I do feel some relief, just getting things out.
Posted 10/6/2013 10:48 PM (GMT -5)
I am the opposite right now. I had a totally clean colonoscopy back in February. No active colitis, no polyps, the spot of inflammation seen on two prior colonoscopies was not present. On September 26th, I got up feeling the need to use the bathroom, could not go. Was totally backed up. Ended up in the bathroom probably 6 or 7 times that morning straining which I've never had to do until I tore myself when I finally was able to go. Have never had a constipation issue, mine was always the opposite. I've had two other bleeding spells since, yesterday morning and this morning. I was not called in any Rowasa enemas, was told to use my one refill of Analapram for Hemmies, this feels like them in a way but in a way doesn't also. I used the tube of Analapram yesterday morning with the tip on it that has the holes in it and immediately it tore me and there was blood dripping in the toilet, this morning there was some on the stool. My bathroom trips have been normal since that event, however, it really has tested my nerves until I've had enough and am going to the doctor with hopes of getting Rowasa enemas. It really has me irritable so I know how you feel.
Posted 10/7/2013 12:10 AM (GMT -5)
:-(

I know how you FEEL, i have never had remission longer than 2 months and every time i organise to do something social or a trip even it seems to ruin everything and i have to cancel. I have given up on my dreams of going O/S even for a few wks as i just cant plan anything without it impeding my life and ruining my plans. It is a horribly debilitating illness and others who dont suffer or have a family member that suffer from UC or Crohns have no idea really.

This forum is sometimes the only thing that gets me through..

I feel for you very much and i can understand the want for surgery.
Posted 10/7/2013 12:20 AM (GMT -5)

enfyre said...
I'm happy that I don't have AIDS

Don't get me wrong...I'm happy I don't have HIV also...but, with HIV you can live a totally normal life, and I think there's a good chance it will be cured by the time all meds stop working for you if you're recently infected.

So much money and research gets poured into HIV/AIDS...not so much with IBD, and the chances of living a normal life with it is very small.
Posted 10/7/2013 9:20 AM (GMT -5)
allswell, I am sorry you're feeling down. I don't know if surgery is the solution or if you should try to get help for controlling your emotions but I understand how you feel. I am in remission and peoples expectations always get me down, and sure, facebook and all these services where everyone is blabbing about how great they are is not helpful when you're feeling bad about yourself. I think there's a point where we need to back away sometimes, take it easy and focus on ourselves. Are you on prednisone? When I was tapering off pred I was so emotionally unstable and upset, thought i would never improve. I was a mess. Try to think positive, things will get better, whether you decide to have surgery or battle it out with medicine, you will get better! I get in these very negative midsets too. I have been in one nearly my entire life, i just don't LOVE life like a lot of people. I have tried antidepressants and I suppose it was helpful, it didn't change my outlook unfortunately - negative outlook seems to be ingrained in my character.
Posted 10/7/2013 9:48 AM (GMT -5)
One of the top reasons to have surgery is to improve quality of life. If you feel that you have exhausted your medical route, and you want your life back, surgery might be for you. I opted for surgery because I was depressed at seeing everyone around me living life; and I couldn't leave the house except to work. And this was long before Facebook! Just to note; if you opt for surgery; the depression might not lift and you may need to temporarily take an AD. That was my experience.

Sue
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