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  • Ulcerative colitis - so honestly, which is worse

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    Old 09-25-2003, 12:30 AM   #1
    BrianKosh
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    Thumbs down Ulcerative colitis - so honestly, which is worse


    the actual disease eating away at u, or the mental stress it puts on u? depending on how bad it is, u take a zillion and 5 drugs, maybe go into remission, stay a month or two or maybe six months... feel really great... then it flares up... and u start all over... severe cases will have the damaged part removed, and it should cure u... But for the people that are not severe or can't have an operation, for whatever the reason, u get to deal with it, and try to cope... but eventually the roller coaster of what it does do u, becomes mentally exhausting... so what do u do? which is worse the direct issues of the disease or the indirect issues that mentally drain u?
    My case is not major, there are people far worse off than me and always will be... yet, I am now on prednisone, because, I can not tolerate the other meds.. or they fail to work.. I frowned 3 years ago ever being put on this stuff. It is too bad that this stuff is exactly what UC needs in most cases to treat the disease, but long term is just so bad for the body.. but that is off the topic of the the purpose of this message.. or is it. Not having fun in the sun..

     
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    Old 09-25-2003, 02:47 AM   #2
    Sarah68
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    I have to say that you do not really get anywhere with treating the disease itself. You need to treat the person with the disease rather than the disease itself and this is just what modern medicine does not make enough time for, which I feel is extremely sad.

    If only doctors would take a little more time with their patients and treat them rather than their specific disease state, it would make so much difference. The things is, yes, there is UC, however, every single patient with UC that goes into a doctor's office will be displaying a completely different manifestation of this than the next person, which is why giving everyone the same form of treatment just because they have UC is wrong. The choice of treatment has to fit the person with the disease and not the disease itself.

     
    Old 09-29-2003, 09:53 PM   #3
    PrincessSpice
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    Quote:
    Originally posted by BrianKosh:

    the actual disease eating away at u, or the mental stress it puts on u? depending on how bad it is, u take a zillion and 5 drugs, maybe go into remission, stay a month or two or maybe six months... feel really great... then it flares up... and u start all over... severe cases will have the damaged part removed, and it should cure u... But for the people that are not severe or can't have an operation, for whatever the reason, u get to deal with it, and try to cope... but eventually the roller coaster of what it does do u, becomes mentally exhausting... so what do u do? which is worse the direct issues of the disease or the indirect issues that mentally drain u?
    My case is not major, there are people far worse off than me and always will be... yet, I am now on prednisone, because, I can not tolerate the other meds.. or they fail to work.. I frowned 3 years ago ever being put on this stuff. It is too bad that this stuff is exactly what UC needs in most cases to treat the disease, but long term is just so bad for the body.. but that is off the topic of the the purpose of this message.. or is it. Not having fun in the sun..
    Have you ever considered J-Pouch surgery (or any of the "Pouch" surgeries)? I had it done when I was 18 (I am now 23) and I'm quite glad I did. I'm not sure if you know much about it or not but I've found the downside to having a J-Pouch much easier to live with then the downside to having UC. Either way, I hope for the best for you.


     
    Old 11-05-2003, 01:58 PM   #4
    BrianKosh
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    Quote:
    Originally Posted by PrincessSpice
    Have you ever considered J-Pouch surgery (or any of the "Pouch" surgeries)? I had it done when I was 18 (I am now 23) and I'm quite glad I did. I'm not sure if you know much about it or not but I've found the downside to having a J-Pouch much easier to live with then the downside to having UC. Either way, I hope for the best for you.


    It isn't severe enough for that. And prednisone so far has controlled that part, but it is mentally doing me in, more so then the rest.. I suppose I could just be nuts and this added to it..

    oh well

     
    Old 11-05-2003, 11:07 PM   #5
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    Hi Brian,

    Where in the bowel is your UC? I may have asked you that question before..but I hope you don't mind answering it again.

    Have you not been on the 5ASA drugs before? you mentioned nothing before worked for you. Could you elaborate on what you mean by not working? Did you have side effects from the meds?

    I was diagnosed 15 years ago. Mine is limited to the rectum and sigmoid, and the only meds I've been on are the 5ASA (asacol tabs and Salofalk retention enemas). The Asacol is a constant, and I treat the flares by increasing the Salofalk.

    Are you constantly wanting your UC to be cured? If you eventually get to accept that you can live and function with a chronic disease..it does help mentally. Since there is no cure for UC -- that's a bummer.

    I understand people who are on Pred do have mood swings and more depression than they may have while not on it. There are many factors involved. If you have depression, you may have to seek other options to deal with it.

    It is a whole person disease, not just a focus on the gut. Treating it "wholistically" is definitely a challenge.

    I agree, that having this and knowing it's life-long is really the pits. I've been on the 5ASA meds for almost most of the 15 years. I've not really been able to maintain a long remission without meds. I'm also on Effexor XR, and that's helping with the depression I've had since forever.

    It is a day to day struggle sometimes, to recognise if it's a flare, what I ate, food, meds...etc. But, accepting it and being just one step ahead can help a lot in dealing with UC.

    I wish you the best,
    quincy

     
    Old 11-07-2003, 03:11 PM   #6
    prendi
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    Unhappy ulcerative colitis

    i have had ulcerative colitis for around 15 years and i still can't get used to feeling like rubbish every few months.i am on lots of meds,enemas,health supplements,and still i dont feel any better.
    at the moment i am having a flare up ,my doc has put me on entocort enemas,as i get weird on the prednisolone ones.they have made my legs go very weak and shaky,my hands are shaking and i am still bleeding.so whats the point?i know it gets you down ,but as there is no cure for it we have to smile and bear it.you are not alone and like someone said "each day above ground is a bonus!!"good luck .

    Last edited by prendi; 11-07-2003 at 03:18 PM.

     
    Old 11-11-2003, 08:14 AM   #7
    Marg001
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    Hi there,
    I know what you are going through. I had ulcerative colitis about 10 yrs. ago, I had emergency surgery done and had an illestomy done then 2 years later I had a pelvic pouch done(internal). I feel great other than havng a bad back. Have you thought about having the surgery done. The long term use of predisone is not good. I was on it for a short period and it made me feel the exact same. If you are still bleeding you should go immediately to your Doc or even better,the hospital. Get back to me and let me know how you are doing.
    Take care!
    Quote:
    Originally Posted by prendi
    i have had ulcerative colitis for around 15 years and i still can't get used to feeling like rubbish every few months.i am on lots of meds,enemas,health supplements,and still i dont feel any better.
    at the moment i am having a flare up ,my doc has put me on entocort enemas,as i get weird on the prednisolone ones.they have made my legs go very weak and shaky,my hands are shaking and i am still bleeding.so whats the point?i know it gets you down ,but as there is no cure for it we have to smile and bear it.you are not alone and like someone said "each day above ground is a bonus!!"good luck .

    Last edited by Marg001; 11-11-2003 at 08:15 AM.

     
    Old 08-29-2004, 12:53 AM   #8
    BrianKosh
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    Re: Ulcerative colitis - so honestly, which is worse

    I'm late, so this will just be an update...

    if I remember correctly it is right before or quite near the sphincter, there is also more imflamation that shows up, even when the scars near the sphincter
    do not.. the sigmoid area.. needless to say I am forgetting all my key words, and area's, I think because Every visit to the dr. something seems to change in the diagnoses... my guess is I wasn't paying attention the first time, thanks to shock.. He always records it as IBD-IBS
    95% of the time the IBS will be the runs, and lots of it.. who needs to urinate, when it seems to shoot right on through.. as for attacks? they have past the point of giving birth to a full grown killer whale and all the screaming and begging for mercy (oh yes, twice i did that I think I stopped because I embarrassed myself.. now I just plain cry.)

    meds? I was taking Pentasa the first time around, and the scars went bye bye, then the scars returned, while I was STILL On Pentasa... that was disconcerting..(sp??) so, I eventually went to the pne drug I never wanted to take, prednisone.. 3 months later if all was under control again.. and had been up to 2 months ago... now I am bacl to fearing roughage again.

    I am also lactose intollerant.. although it doesn't seem to ALWAYS cause me issues..

    Now I am taking... Asacol (my remark to my doctor is, if they are all 5 ASA meds, what is putting me on another if the ther brand name failed to work??)

    I even have had the Rowosa retentive enema... and stopped after I felt really ill and a burning sensation.. like it was flowing and burning through my large colon..


    UC is only curable with the removal of the "defective" part.. but when I asked about it, I was told it would cause more issues than it causes now..

    HOw was I originally dealing with the UC? oh I know this sounds bad, but as long as I knew of or rememebered there was always someone worse off than me, it got through a lot of issues..

    As for my mental state, I let it all cave in on me and get to me to the point where I finally went to a psychiatrist(sp??), I was diagnosed with Bi-polar 1 disorder..

    So I take Lamictal and Wellbutrin.. I guess it all works, just some days it feels like sugar pills..

    and is there a noticable change? why yes, my spelling has gone to the dogs..
    the ups and downs are softer .. but there is still a lot of work needed upstairs..


    thanx ..

    hope you are doing better or at least hanging in there. stay

    Quote:
    Originally Posted by quincy
    Hi Brian,

    Where in the bowel is your UC? I may have asked you that question before..but I hope you don't mind answering it again.

    Have you not been on the 5ASA drugs before? you mentioned nothing before worked for you. Could you elaborate on what you mean by not working? Did you have side effects from the meds?

    I was diagnosed 15 years ago. Mine is limited to the rectum and sigmoid, and the only meds I've been on are the 5ASA (asacol tabs and Salofalk retention enemas). The Asacol is a constant, and I treat the flares by increasing the Salofalk.

    Are you constantly wanting your UC to be cured? If you eventually get to accept that you can live and function with a chronic disease..it does help mentally. Since there is no cure for UC -- that's a bummer.

    I understand people who are on Pred do have mood swings and more depression than they may have while not on it. There are many factors involved. If you have depression, you may have to seek other options to deal with it.

    It is a whole person disease, not just a focus on the gut. Treating it "wholistically" is definitely a challenge.

    I agree, that having this and knowing it's life-long is really the pits. I've been on the 5ASA meds for almost most of the 15 years. I've not really been able to maintain a long remission without meds. I'm also on Effexor XR, and that's helping with the depression I've had since forever.

    It is a day to day struggle sometimes, to recognise if it's a flare, what I ate, food, meds...etc. But, accepting it and being just one step ahead can help a lot in dealing with UC.

    I wish you the best,
    quincy

     
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