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this flare has aged me 20 years in the past month

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Ulcerative Colitis
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Posted 10/21/2007 7:41 PM (GMT 0)
I have dark circles and bags under my eyes and I am just wiped out, I am tired just walking up and down stairs doing my laundry.  I don't even feel like me anymore.  I don't want to  do anything.  Went to a halloween party last night and I left early, just could not have fun, I was worried about flaring up while there and pissy b/c of the pred. 

Though my flare is getting better, less blood, less bm's and a few semi formed bm's.  I am still flaring and I am just so tired of being sick.  I have been laying down all day and still no energy.  During the week I wake up at 6:30 don't get home till 6:30 go to bed at 8pm and wake up a few times during the night.

sorry, just had to vent....

Posted 10/21/2007 10:21 PM (GMT 0)
Go ahead Beth, vent away. This disease is not an easy one thats for sure. There are times when I think I'm already at my lowest and the ole UC rears and kicks me further down. It gets depressing but once you reach remission, things will start to improve both mentally and physically. Hang in there :)
Posted 10/22/2007 1:59 AM (GMT 0)
That's what we're here for!! Keep your chin up, kiddo!
Posted 10/22/2007 2:41 AM (GMT 0)
Beth,

I was the same way, tired, exhausted and just fed-up with the flare so I finally checked myself into the ER and into the hospital. I had been flaring since May and it was really bad during the July and August but my symptoms were gradually improving and I kept telling myself that I was too busy and my flare was getting better. But I was suffering (20+ bms a day) and I finally convinced myself that I needed to take time out of my life to get fixed up; I chose IV Cyclosporine because it was the fastest acting besides prednisone (which I will never take again). The doctors in the ER asked why I had waited so long, I told them that I was just too busy and was hoping that my current meds would work.

You may want to consider checking yourself into the hospital. I was happy/relieved once I was in the hospital and knew that the worst of my flare was over.

--Keith
Posted 10/22/2007 3:19 AM (GMT 0)
I am right there with ya Beth. I am so tired all of the time, especially since starting Imuran. I take it at night but Im still weak and lethargic all the next day. Before the stupid disease entered my life I was working out like a champ, now I just want to sleep. I fell asleep at a theater today. And I look horible too. I look like you described with bags under my eyes. And Im losing hair. And Ive been thinking about how all these meds and the disease itself will shorten my life expectency. I hate to through that out there, but isnt that someting we will likely face? To sum up this very negative entry, which Im sorry for, I had enough issues before this disease, now Im 10X worse :(
Posted 10/22/2007 4:19 AM (GMT 0)
Dear Beth,

I am so sorry to hear that you are not feeling well. Have you started the Imuran? Also, I was wondering what was going on with your minimal change disease. Have the doctors done any more blood test or urine tests to see if it has resolved itself? Feel free to vent anytime. I know that the fatigue from the disease is difficult to go through everyday.
Sometimes I feel soooo tired that I feel like sleeping all day. Hang in there.

Regards,

Smita
Posted 10/22/2007 4:22 AM (GMT 0)
I have felt that same way on many occasions. Last year, I barely left the house for nearly three months. (Fortunatley, I'd just quit my job and didn't have to worry about getting to work.) I really thought I was at the end of my rope. I know that I don't have to elaborate because you all know what I mean. It's when you start thinking that you'll be spending your whole life in the bathroom.

I started taking 6MP during that time. I don't know whether it was the 6MP finally kicking in, or other life factors, but after about 8 months of that misery, I finally got better. And you know what? I spent the last year traveling! There were some difficult times during the trip when I felt lousy, but we muddled through those times and eventually I got better.

I've always found that I felt better on vacation. Maybe it's the complete change in environment, food, etc. Beth and 30y.o. -- Do you think you could take a short medical leave from work? I did that once when I was in really bad shape and my employer was so great about it. I took two weeks off, tried out some new medications, and my flare calmed down a lot. It was short-term disability, but at that point I would have been happy with two weeks of unpaid time too. Just something to try to break the cycle of being so tired all the time.

Hang in. And let us know how you are doing. Venting is good.
Posted 10/22/2007 5:04 AM (GMT 0)
30y.o.guyw/U.C.

I know when I was younger, I was sure I would be dead by the time I was forty. I was diagnosed at age 15, and my worst years were from 15 to early thirties. For whatever reason, in my thirties my flares were more and more moderate. I was sure I would be diagnosed with colon cancer because of the UC. Well, here I am at 62, and while I still have UC it is not as bad as it was. I still am checked yearly, and there is still the possibility of cancer, but I have lived a pretty full life (although I would have given anything when I was young to be able to talk to another person living with this. This board is a Godsend. I think this disease can be very lonely).
Posted 10/22/2007 1:21 PM (GMT 0)
Thank you everyone, I really appreciate your comments, empathy is a great thing, knowing you are not alone (though I wish no one else would ever have to go through this).

I did start the imuran last week and did my weekly blood test this am. Is it better to take Imuran at night? I have been taking it in the am w/my prednisone.

I have my PPD test pending for Remicade Nov 5th and I am getting better so I hope maybe I will be okay enough not to have to go on the remicade. I think going cold turkey off the 5ASA's is what threw my into this tailspin flare...I had been on it for 7 years straight.

The pred is helping my kidneys and went from losing 4.7grams of protein a day to 3.2 grams a day, so the little 'feet' are reconnecting themselves in my kidneys = ) and helping me not to lose as much protein. I still have edema and since I have stopped working out (just too tired/flare) it does not go down as much, I think that may be b/c of the pred?? Next kidney appt is Nov 9th so hopefully I will have more good news to report then.

Couple of things I have learned in retrospect, I should not have gone cold turkey off of the 5ASA's. I should have tapered. And I think the pred may be helping my UC so I will keep my kidney doc and GI working together b/c I don't want to go into a worse flare tapering the pred. I am doing 60 one day 40 the next and so on. I am not crying as much anymore, I think b/c I am not going to the bathroom around the clock and do see some kind of light at the end of the tunnel and am handling it better.

thanks everyone, I really do appreciate it!!!!
Posted 10/22/2007 1:41 PM (GMT 0)
When I first started 6mp my GI said to take it with breakfast but I found that the initial side effects were too noticable thru out the day so I started taking it at night and it made a world of difference. I think it's a preferance thing in when you want to take it but I recommend taking it night so that way if you are going to have any side effects it will be less noticable to you.
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