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Emotions surrounding the first relapse.

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Ulcerative Colitis
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Posted 4/4/2010 4:44 PM (GMT 0)
I was wondering how people felt when they had their first relapse out of a remission. For me, it was personally upsetting because I didn't recognize the signs when I feel I should have. So I blamed myself. It also shows how vulnerable you are to relapses when I thought I was home free. I think fruitgirl was the one who informed me that I was in a relapse so I was really clueless, lot of denial it could happen again.
Posted 4/4/2010 8:03 PM (GMT 0)
OMG...wait till you have 21 years of flares off and on, but as I look back, it's never been as bad as the first years.
My doctor wasn't an arse, however....I believed in his process and he obviously trusted me to do what was needed.

Oh, he never used scare tactics.....


I'm pissed off when I flare, but I know my plan of action will work. I use the enemas, take Bentyl and in a few days I'll feel better...I continue what I need to do.

It is what it is....experience is your teacher. Learn from it, because if this is the way you react every time, it'll be a very rough ride.

I'm still hoping the enemas will allow you the healing time once you're off the pred....if you accept to use them and be patient.

You've come a long way since the first time. Of course, finally your brat doctor gave in with the enemas.
Waddyaknow...miracles do happen....lol
q
Posted 4/4/2010 8:34 PM (GMT 0)
If anyone is to blame for your relapse it's your doc, not you. He's the one who told you to drop all the way down to 6 Asacol, and I feel very strongly that's why you flared again so quickly. I haven't really had a true relapse yet...I was getting close to remission when a tummy bug got me pretty sick again, but it's not quite the same. I'll probably be pretty bummed when I do have another flare, considering I've been in remission for a pretty good while now.
Posted 4/4/2010 10:23 PM (GMT 0)
This is only my third flare in my life (had the disease for about 9 years now). I don't remember a lot about my second flare. I remember that it sucked, but I don't really feel like I got very upset about it.

The flare I'm in right now has been pretty hard emotionally. My social life has taken almost a complete halt. Not only have I had to pass on going out with friends, but at work we have a group of people who like to go eat lunch together every day. I've become a burden to the group because I'm on such a strict diet.

I definitely blame myself for not noticing symptoms soon enough and letting it get to the point it's gotten to, but I don't blame myself for the flare happening. No use in getting mad over it. It won't help anything. The only thing I can do is to do the right things now and to work towards remission. And that's what I'm doing. ;]
Posted 4/5/2010 1:17 AM (GMT 0)
I do like doing the enemas because it's something proactive that I feel I can do for myself that logically should work -- unless 5ASAs don't do anything for me at all.

I think extreme anxiety (totally out of control, really) contributed to the second flare so I think I've got that under control with meds. As I write this I'm very calm.

But I have to set myself up for fact that I may not be able to maintain remission on 5ASAs.

This disease keeps tripping me up because there are so many new symptoms that hit.
Posted 4/5/2010 4:50 AM (GMT 0)
How about this....subconsciously you do NOT want to use the 5ASA meds because you believe they contribute to hair loss....possible?


No reason other than your body reacting in a completely negative way that you won't be able to take them. Besides, you will be tapering...you haven't even had that chance yet.



We all wait a bit to confirm a flare....some wait longer. You didn't. Your initial flare probably wasn't even healed yet and your doc's decisions led to the relapse I think....
q
Posted 4/5/2010 4:59 AM (GMT 0)
I always say I am going to catch the flare quicker next time. The reality is, it's hard to notice whether the symptoms are a flare or if they may be a bug or just gas. I don't think you can blame yourself too much. I caught this flare early on and it kept getting worse. I increased my Asacol and used suppositories morning and night and nothing helped. I don't think anything short of prednisone would have helped. Maybe I am wrong but I had no insurance at the time and I couldn't experiment so I did what I had to. I felt pretty bad knowing things were headed down hill but I never expected to go forever without a flare up. I've never been one of these people in a really solid remission where I could miss a dose of Asacol and not notice symptoms right away. I am always teetering on the edge of a flare it seems. I hope this time things are more stable.
Posted 4/5/2010 6:34 AM (GMT 0)
I don't care so much about the hair loss. that's life. If it were big patches of hair gone I guess that would be bad. I'm worried about 6 mp which means more hair loss, but more importantly, more toxic things for my body. I don't think I was out to undermine myself. I was just listening to my doc. He actually said to me you don't taper on Asacol. Either you take the full dose or if you are in remission you take six. It's not the same thing as prednisone in terms of tapering, he said. I agree with notsosicklygirl. Feel bad that you say you seem to always be teetering on a flare. How nervewracking.

I do think that once things start, it can snowball fast and pred may be the only answer, and upping maintenance meds is futile. If this happens again soon I will have to go to 6 mp. Am getting bloodwork done just in case. And, am getting a second opinion on my case.
Posted 4/5/2010 11:42 AM (GMT 0)
This is my first major flare and I blame myself that it spiraled out of control the way that it did. I was diagnosed with UC Summer of 2008 and while I was good about keeping my doctor's visits and using my Mesalamine Enemas I did not educate myself enough about what UC was and what could happen in the future. In retrospect my UC was progressing and I stuck my head in the sand and did not recognize that that's what was happening. MY doctor considered me a mild case, I thought I was a mild case and when this flare started we were 1-2 steps behind it's progress for 2 months. It spiraled out of control and now here I am on Prednisone that has just destroyed me. I keep looking back and thinking how this could have been avoided or at least not gotten to this point. From day 1 it has been too little to late and now it's gotten to overkill and I have to recover from prednisone over kill. So, I wasn't in denial this could happen again I wasn't even smart enough to know it could happen at all...
Posted 4/5/2010 2:59 PM (GMT 0)
It's extremely devastating.  It hits you emotionally and physically and disrupts your life in so many ways.  It reminds you that this disease process is chronic and can hang around for the rest of of your life, unless one has surgery.  In fact when I relapse it reminds me of the options of surgery.  I just try to regroup, have a sense of humour about it and push forward.

MyUC

Posted 4/5/2010 3:42 PM (GMT 0)
UJU,
I can totally relate to your comments. MyUC, you have a lot of understanding.

ellen
Posted 4/5/2010 9:14 PM (GMT 0)

journey2health said...


I do think that once things start, it can snowball fast and pred may be the only answer, and upping maintenance meds is futile. If this happens again soon I will have to go to 6 mp. Am getting bloodwork done just in case. And, am getting a second opinion on my case.
Definitely get a second opinion.



Snowballing to the point of pred and upping maintenance meds is futile????? not true at all, because you've not even the experience to know how to use the 5ASA meds....besides, they're treatment and tapered to maintenance. Why do you keep going back to that belief? Please try to not go there at this point.

quincy

Posted 4/5/2010 10:05 PM (GMT 0)
The other thing and I don't know if this works, but people say, is to up your VSL3 hugely. I take one packet a day, about all I can afford. But if I kicked it to 4 to 8 help with remission is there. Who has the money though... Would max do it at 4 packets, wonder how long it would take to kick in.
Posted 4/6/2010 9:35 AM (GMT 0)
I wouldn't do it....I don't think it's necessary.

One a day is a good amount.

q
Posted 4/6/2010 7:54 PM (GMT 0)
Always, need to watch the bottom line (tee hee) when it comes to expenses (like VSL 3)
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