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Can you get blindsided?

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Ulcerative Colitis
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Posted 8/18/2010 1:46 AM (GMT 0)
I have a weird question...I've had UC for nearly half my life now at this point, and can honestly say that once I was diagnosed and got the initial inflammation under control, I've had it pretty easy. I was able to skip meds and only take them if I felt a flare starting up. And even in those situations, the flare would get under control quickly and I'd be back on my way with no major impact to my life. I've never been hospitalized or needed anything stronger than Rowasa's and Mesalamine.

The question is this (and I'm asking this because I'm experiencing a flare right now)...do most people present with HORRIBLE symptoms and then find that flares are equally horrible? Or has anybody ever been like me, sort of bumping along, no real problems, and then then BAM - you get blindsided by a horrible flare that's incapacitating in its severity?

Just curious. I'm going to call my GI about the current flare because I think I need some Rowasa, but I can't help just assuming that it'll all end up okay with no major effort on my part. Am I being too casual about it?
Posted 8/18/2010 1:59 AM (GMT 0)
I hope you are right!  I do the same as you - after getting off prednisone and 6MP and getting into remission with rectal meds finally - I also go along and use the rectal meds when I "feel" like maybe a flare - like cramping or little diarrhea or mucous, etc.  Sometimes it is one or two weeks and sometimes longer.  I use the rectal meds - Cortifoam and Anusol a couple times - maybe three and then go on with life. 

Hope we can continue to do that!

ElaineNY

Posted 8/18/2010 2:26 AM (GMT 0)
For 10 years my UC was in remission and then I was hit with a severe flare. No rhyme or reason, no change in maintenance meds, no stress. For 2.5 years I battled a severe flare which resulted in surgery. So yes, you can have long remissions and then fall out.

Sue
Posted 8/18/2010 7:11 AM (GMT 0)
I glided along with mild UC for over a decade. Ive had 2 large flares that were pretty easily treated. My most recent flare was life altering. I got slammed. I really think it got so bad because I went off all meds inbetween flaring. Mesalamine keeps inflammation at bay and I only took it while ill. It spread all throughout my colon. So learn from me and take a maintenance dose during remission!!
Posted 8/18/2010 7:17 AM (GMT 0)
Yes, you're too casual and have been till now. With experience comes the lessons. Get back on your meds and taper them to maintenance once the flare is done.

You may not have been blindsided if you realised or acknowledged the symptoms you were already having.


q
Posted 8/18/2010 11:24 AM (GMT 0)
Nope, I have never had it easy with my Uc. I have always had it bad but if I knew then what I know now, I wouldn't have been so lackadasical with my med regimine and I would've taken better care of myself.  But yes, I think you are being too casual with this too.  You need to take better precautions and care of yourself to prevent possible spreading and/or worsening of your condition.
Posted 8/18/2010 11:38 AM (GMT 0)
Yes, I was totally blind sided. When I was initially diagnosed (Summer 2008) I had a VERY mild case of UC. I controlled it with Rowasa and Canasa alone until late December 2009 when I started the never ending flare I'm currently in. I have been sick now for 8 months and stuck on pred. for 6 months. Because I was such a mild case previous to this flare my doctor and I have been having an adventure up the med chain - now trying Remicade. I am starting to think I'm on the express train to surgery town, but I'm going to give Remicade and possibly Humira a fair shot first. So, while I don't want you to freak out, it can get worse. My doctor said he would guess that 70% of the cases he sees with initial onset like mine stay mild. And he's really perplexed as to why Mesalamine worked so well for me initially and now my body won't tolerate it.
Posted 8/18/2010 11:40 AM (GMT 0)
My 18 year old daughter had been sick for over 2 years with vomitting and diarrhoea, she was sent away from hositals on numerous occasions, told she was neurotic, was anorexic etc. She moved interstate to live with me, was no longer able to work, had to leave her traineeshi etc. When she came to be with me, she had lost over 11kgs, was very frail looking and seemed to be dehydrated. Almost from the first night she was with me she started with the vomitting, the mucoosy diarrhoea and the severestomach crams. I rushed her to my local hosp0ital, they immediately knew something was wrong and she was subsequently diagnosed with the worst UC they had ever seen, extending through her whole colon. She was started on large doses of medsand her illness settled down quickly and now 9 months later she has gained 9 kgs and is looking well and has recently started back at work. She had a follow through colonoscoy the other day and her colon was entirely free of ulcers and they are now saying she never had ulcerative colitis but had seudamembranosis colitis brought on by anti biotics....has anyone heard of this? Has anyone heard of it lasting for so long? Also they have said she has a few tiny ulcers in her small intestines, totally unrelated to the other ones and this could be the very early stages of crohns.....do the doctors know what they are talking about...she is under a very eminent gastro enterologist
Posted 8/18/2010 5:23 PM (GMT 0)
thanks for knocking some sense into me, people. :) I made an appt with my GI (unfortunately next monday is the earliest they can get me in), but I'm going to get it checked out and hopefully get some rectal meds to treat things from both ends. It sounds like you definitely CAN get blindsided after being a mild case for a long time.

To Quincy's point, I've been ignoring the more subtle symptoms for awhile...I frequently experience general abdominal pain that I know is related to UC, but since there's no blood, I don't worry too much about it. Then it resolves and I'm fine. However, it's progressed to blood now, so definitely time for some action!
Posted 8/19/2010 7:29 AM (GMT 0)
Well, I don't use bleeding as my "treatment" green light. I didn't bled with flares for 14 years after I got the hang of using my rectal meds.
I can only imagine what would would have been if I waited.

you're learning... the key words you used were "for a while"...meaning they were consistent over a period of time. Welcome to the next phase of recognising early symptoms.

q
Posted 8/19/2010 1:55 PM (GMT 0)
kelli,
I sure hope you doctor visit ends up with your getting some Rowasa or something, your flare responding easily, and your UC not being the major focus of your life!

But, having said that......
It took me years - and this forum (and many, many thanks to Quincy) to change my mindset about symptoms and how I reacted. For two decades, if I had some symptoms, I'd take the approach, "Well... maybe this is just a blip, let's see if I can ignore it and it will get better....."
AND, silly me, I'd go into flare.
Now, after 3 days or so of "beginning" symptoms - for me, that gas, frequency, a little blood....(I do wait a few days to make sure it wasn't a particular meal or a virus), I start up the rectal meds, double the probiotics..... and this is, for me, the much smarter way to go - catch it before the inflammation gets worse and spreads.

Congrats for taking hold of your life and being proactive, the first step being your doc appointment!
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