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How bad is too bad?

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Ulcerative Colitis
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Posted 10/26/2011 8:09 PM (GMT -5)
I've been around the forum a little while now so I've always been aware of how much worse some of you have it than me - going 30 times a day, lots of blood, all that... wasn't me.

It's been almost a year since my diagnosis and I've never been in a full remission since, but I don't know if I'd call it a flare - I thought of it more like UC limbo. Better than before I was on meds, but not "better", cured.

Well the last couple weeks I've been getting worse. I just broke the cardinal rule of my personal UC - that I never have two bad days in a row. (I always thought it was because I was good and "cleaned out" from the day before and/or Immodium putting things on hold.) Also the rule where I thought as long as my goal was in sight, I'd always be able to make it those few more seconds/steps. Now that I'm having more liquid d, there's been some.. leaking.

Honestly I'm kind of scared... if I didn't have the perspective of seeing how much worse it can get I'd be terrified. If I had to answer what I'm scared of though, I'm not sure exactly... How does someone know when it's time to go to the hospital? I always figure it's pointless to go when I already know what's wrong. ("You have UC.") I have no worries of losing my job over this, but I still have to keep up my responsibilities at the same time. I have no problem with losing my colon, but I want to do it when I'm ready (in a few years, after having kids.)

I'm at work right now, everyone else is gone so I can run to the bathroom as often and as long as I want with no self-consciousness (not that that stops me when people are here.) Also I like working later because it's easier to get things done when the office is empty, but right now I feel so weak and exhausted that I just want to curl up on the floor and cry.

I'm taking Friday and Monday off so I have some time to de-stress since work has been very obviously been taking a toll on my health - but that just means all the more I need to get done in the meantime. I'm debating taking work home tonight but I think that'd let me too easily give into the temptation to just pass out.

I start Remicade the Saturday after Thanksgiving so there's potential hope in sight but it's a month away. I thought it was no big deal since I've been living with this for so long, but I didn't anticipate the getting *worse*. I actually started wondering if I should be on prednisone again - which I said I'd have to be dying before I take again - so that shows how I feel. Not wanting to gain weight and all the other side effects are meaningless when I don't feel like I can function.

Also the day *before* Thanksgiving I'm supposed to go to a concert. I need to ask my husband when I get home if he's already bought tickets and if I can get mine at the door in case I can't go, we don't waste money. I feel so bad, even though I shouldn't, like it's my fault. That I just need to "try harder" to make it through one day for his sake (and mine, I really want to go to the concert too!)


(Also, yes I'm on rectal meds. tongue)
Posted 10/26/2011 9:23 PM (GMT -5)
I'm sorry you are feeling so much worse. I have never been in the hospital for my UC before, but this summer I think I definitely needed to go. I think things like multiple trips to the bathroom, inability to eat or drink, fever, dehydration, rapid heart beat...those are the things that should be considered. But I think what they would probably do for you is give you IV fluids and IV steroids. So maybe you can avoid a trip to the hospital by going on the steroids. You might talk to your doc about a short course to get you through until your Remicade infusion. Or have you tried the steroid enemas? During my last flare, I used them in the mornings (Rowasa at night). While they didn't put me in remission, they did give me a good portion of the day when I could function a little better. If you are thinking hospital or pred things must be pretty bad, so you should talk to your doc. Good luck.
Posted 10/26/2011 9:38 PM (GMT -5)
I got really bad with my last flare. When i saw the GI he told me I should have ended up in the hospital. I had lost 25lbs in about 3 wks. I was forcing myself to eat something just because I knew I had to eat. I think the hospital is the very last resort for me, but I came close to throwing in the towel and asking hubby to take me. I resisted only because we have a 7 month old and I didn't want him to have to care for him totally by himself. I wasn't much help at that point I was real weak and sleeping almost all the time when i wasn't in the bathroom but I was at home. If my husband wouldn't have been here to take care of me I would have ended up in the er. I needed nourishment, we actually found something I could eat and gradually each day my appitite started coming back. By the time I got to the Dr I was starting to feel slightly better but I did need the additional meds to help me to continue to improve.

I would say go to the hospital if you feel you are to weak, or if you can't eat anything.
Posted 10/27/2011 12:22 AM (GMT -5)
Well I'm not hospital worthy. My body doesn't have the decency to not be hungry when I'm sick. I'm at home now, still working, and exhausted, but not running to the bathroom constantly and weak like I was earlier.

In a way the hospital is almost a fantasy, since at that point all responsibilities go away. At least for me - it's just work, and work can learn to deal without me, but they won't until I get to that point.
Posted 10/27/2011 1:42 AM (GMT -5)
How much blood are you having?
Posted 10/27/2011 3:09 AM (GMT -5)
I've never been much of a bleeder with this disease... most of it can be written off as hemorrhoids, including the toilet water that looked like I dumped red food coloring in it a day or two ago. However despite "bloody diarrhea" being the hallmark of the disease, in the past I know I never had it, it was either/or (solid with blood, or diarrhea without blood). Now I'm starting to see little traces of red when I get to the.. er.. "liquid" stage, which isn't much on its own but definitely new for me.
Posted 10/27/2011 5:26 AM (GMT -5)
Why do you think the blood is hemorrhoids? It sounds like your uc. I always read the same things too about other people's severity, and thought mine was different, but it finally got to that same point.
Posted 10/27/2011 5:26 AM (GMT -5)
Why do you think the blood is hemorrhoids? It sounds like your uc. I always read the same things too about other people's severity, and thought mine was different, but it finally got to that same point.
Posted 10/27/2011 6:39 AM (GMT -5)
How bad is too bad? I would say that would be when you have zero quality of life and your UC is controlling your life. That's when I had enough and had my stupid colon out.

I hope the Remi works for you to get you in to remission. I can understand not wanting surgery before having children. Best wishes.
Posted 10/27/2011 7:10 AM (GMT -5)
You should call your doctor and have this conversation. When you have to take days off work that tells how bad your UC is. Perhaps your doc can move up your Remicade appointment. Why wait and chance a more traumatic hospital experience?

Write down what to say when calling your doctor. Don't say "I think", state the facts "I'm losing days from work and am afraid of getting worse and going to the ER".

Good luck.
Posted 10/27/2011 8:09 AM (GMT -5)
I'm the same way about going to the hospital - I don't like wasting time, mine or the doctors. I've always had pretty manageable symptoms and up until about two months ago never felt like a trip to the hospital was necessary. What got me to finally go was the fact that I couldn't manage it on my own this time and I was going to the bathroom around the clock, I was experiencing rapid heartbeat, and I was just legit scared about what was going on with me. It *was* just my UC acting up and I was placed on the usual prednisone regime, but I cringe to think about how I'd be feeling right now if I hadn't gone.

Everyone's level of tolerance for this is different, but I'd say that you'll just know when it's too much for you. Keep a close eye on your symptoms and if anything seems weird or off, call your doctor.
Posted 10/27/2011 1:08 PM (GMT -5)
I agree with byebyeuc. But I will say that while I understand why a lot of women want to wait until after having children to have surgery. Being pregnant is very hard and to me, being on the meds was horrible I worried the whole time. Not to mention trying to raise a child in the bathroom, and then having to leave him while I had surgery and for the weeks I was recovering. Personally, I wish I had done it before.
But as for your question about going to the hospital getting some iv steroids and fluids is probably your best course. For some reason once you get dehydrated, which you probably are, its harder to keep stuff in or down, and it just keeps getting worse.
Good luck
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