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UC sufferers ultimate medicine fate

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Posted 12/20/2011 2:45 PM (GMT 0)
Is it just me or are a lot of you finding out the same picture forming as I am. It seems everybody I've met with UC and I mean so far everybody "I've met" has kinda the same story, diagnosed with UC, started treatment with prednisone and 5-asa drugs that work somewhat for awhile but ultimately they end up on immunosuppressive drugs to control their disease. The disease is attacking and destroying your colon with an abundance of white blood cells doing the colon damage. Prednisone and 5-ASA drugs try to repair the damage to the colon as quickly as the blood cells do the damage, when these drugs can no longer keep up with the damage being done you then start to show signs of the disease like hardening of the colon as in loss of flexibility and water absorption. At this point if you can no longer control disease with recurrent prednisone treatments you go onto the immunosuppressive drugs that basically kill of your white blood cells in order to slow down the damage being done to your colon to try to give it an equal amount of time to heal itself. So, from what I'm hearing from people I meet with the disease the ultimate fate of UC drug treatment is either now or later to get onto the immunosuppressive drugs and get the balance going of white blood cell kill off vs colon healing time frame.

Is this basically where we are all heading as far as drug treatment is concerned?
Posted 12/20/2011 2:57 PM (GMT 0)
Not necessarily. There are literally thousands of people who do well with 5-ASA's alone and enter solid remission that lasts for years and years. Some do extremely well on diet alone. Uc is so unpredictable that it's hard to know the outcome. Most of us here are in the minority that do not respond well to treatment(s) and that can offer a skewed version of Uc flare/remission outcomes.
Posted 12/20/2011 3:32 PM (GMT 0)
Not necessarily. There are literally thousands of people who do well with 5-ASA's alone and enter solid remission that lasts for years and years. Some do extremely well on diet alone. Uc is so unpredictable that it's hard to know the outcome. Most of us here are in the minority that do not respond well to treatment(s) and that can offer a skewed version of Uc flare/remission outcomes.

Bravo for a concise, coherent explanation.
To the OP: your scenario is one I have actively worked to avoid. Not easy to do for me but so far so good. Never used prednisone, only entocort briefly. 5-Asa's did not help me.


I have a follow-up question(s) on this subject.
Has anyone ever seen reliable statistics that detail what % of people:
1) use 5-ASA's for long periods of time successfully.
2) use non-5 ASA's for long periods of time successfully. (Balsalazide, Colazal and others)
3) use 6mp and similar for long periods of time successfully
4) use Humira ditto
5) use Remicade ditto
6) use a combination of all the above
7) what % of UC people have surgery whether soon or later?

I am not including diet even though that has been my personal success story because I know there will be no data or studies.
Posted 12/20/2011 3:58 PM (GMT 0)
I don't know the statistics but I do know people who have had UC for over 20 years and never been on anything stronger than the 5ASAs. Internet sites for those with UC skew the picture; mostly those with active or disease that is hard to control check in. Others with no disease activity aren't heard from.

As for surgery, 20-30% of those with UC will ultimately end up with surgery. That is a published statistic.

Sue
Posted 12/20/2011 4:36 PM (GMT 0)
I've been known to be coherent on occasion smilewinkgrin
Posted 12/20/2011 4:55 PM (GMT 0)
I know several people personally who have UC and they control theirs quite nicely with 5ASA's. Also a good friend of mine controls his UC with diet. I think you just do not here from those people b/c they are managing their disease just fine. For me nothing worked, even immunosupressants and biologics so I was in the 20-30% of people as Sue mentioned that needed surgery.
Posted 12/20/2011 7:13 PM (GMT 0)
Most doctors seem to start with prednisone maybe for a variety of reasons...initially because it's a good medication and it's cheap.
Many times, the diagnosis isn't difinitive, and the goal is to stop the inflammation.

But, I think that a long-term perspective on treatment would be the best start...I'm grateful my doc had my best interests in mind and used the word patience a lot. 5ASA is his first med...pred is needed at times as he's stated to me..but it definitely depends on the severity and condition of the patient and if the 5ASA meds are not doing their thing. Of course, some cannot use them at all, so that's not an option. I don't really know his take on the immunosuppressives....but he did state that Remi doesn't continue to work for UC for an extended period of time for most.

I think it depends on the doctor and one's health care system/insurance. "Crap"-shoot.

I'd go for surgery before the immunomeds...truly..and biologics isn't something I'd ever consider.

q
Posted 12/20/2011 8:06 PM (GMT 0)
I agree many, not usually on boards, are doing well with 5-asa or diet. I respond to 5-asa - but slowly, and even with rectal meds, the left side is really slow. Improvement (not remission) has been over months - not weeks.

I am trying to wait several more months before reconsidering 6mp, but I do want remission, so ...

BTW, 5-asa and pred do not "repair the damage". 5-asa seems to block something in the inflammation cascade, and pred seems to reverse inflammation. Neither repairs the mucosal cells.

Posted 12/20/2011 8:44 PM (GMT 0)
My mom had UC (I have crohn's colitis), both my mom and myself were/are allergic to the meds used to treat IBD...my mom got sick with her UC in her mid 60's (me in my early 20's before mom got sick with it)...so for about 20 yrs both of us have lived with our IBD using no meds due to allergy (and as well, I am non-responsive to them)...I'd say my mom's UC for the most part was moderate/mild, she randomly went in and out of flares and never used any oral or rectal meds (I've always been in a flare to some degree and on average over my 20 yrs it was more on the moderate/severe side). I've never reached full remission in my 20 yrs of having IBD but I also have some crohn's complications that have played a roll in not being able to get to full remission.

Mom had a lot of issues with C-diff in her last few yrs of life (she passed away last yr) so considering she had UC for approx 20 yrs, and never used meds for it, she never had any surgery for her UC and never developed colon or any other kind of GI cancer (it was a brain aneurysm that took her) I know there has to be more than just myself and my mom that have issues with the meds used to treat IBD...it would sure be nice to know what other people's stats are that are in the same situation as my mom and I. So based on mom's and my experiance with using no meds and for the yrs we have had IBD, I find in interesting that so many people feel that you cannot "live" with IBD and not be on meds forever.

Also, as DBwithUC pointed out, the meds do not repair damage caused by IBD, some meds can help with inflammation but the damage that has been done due to inflammation is not repairable and will leave some degree of tissue damage even when the inflammation in any given area has healed.

I hate this disease, I wish none of us had to endure this disease in our lives.
Posted 12/20/2011 8:50 PM (GMT 0)
...the damage that has been done due to inflammation is not repairable and will leave some degree of tissue damage even when the inflammation in any given area has healed.

Is this true? I've read a couple of posters who have "healed" and when they had their last c-scope their doctor said they couldn't find any trace and it looked like they never had it. Can't point to exact posts but I do remember reading this.
Posted 12/20/2011 9:51 PM (GMT 0)
I would love to know the statistics for success rates of UC medications, but I guess not enough of us have the disease for it to be important enough to be studied. I'm kind of amazed of the people here stating that they are and have been doing fine on 5-ASA drugs for years when I've met so many people now with UC and like I said their stories are pretty much all the same. Maybe I need to met a lot more people with UC. The people I have talked
with say that they would have liked to have been able to control their disease with 5-ASA meds but it was always a challenge doing so and almost always lead to recurrent prednisone tapers, where as it appears the people I've met and ended up on Immunosuppresive meds have thrown away the prednisone. As a side note I noticed that most people I've talked to are also taking some form Prilosec or something like it, which I found interesting. It just seems as though the disease is what it is, an attack on your colon by your immune system (white blood cells) and once it's turned on "it's on". You can either remove the offending organ or kill off the attacking army of white blood cell or try to give your colon time to heal by coating it with 5-ASA and prednisone to reduce inflamation and that's pretty much it.

I've been flaring now for almost 3 months and have just given in to a prednisone taper which is really bumming me out because I really didn't want to go that direction, but I couldn't take it anymore and I had to give in. I'm hoping that my 5-ASA med (Lialda) will be able to keep me in remission once achieved, but it only kept me there for 6 months this last go around. I'm hoping I don't end up like the people I've met on immunosuppresive meds but also don't want to suffer for years or live a half life for years on 5-ASA if it's inevitable that you just end up on immunos.

But I guess there is hope since it appears there are people managing the disease with less toxic 5-ASA meds, I just haven't "met" anyone yet that has.
Posted 12/20/2011 10:58 PM (GMT 0)
I am managing my UC successfully without immuno-suppressives and I'm certainly not the only one here. Although I take Balsalazide and have for 3 years (been through Asacol and 6mp) I cannot say Balsalazide is the reason for my improvement because I had been taking it for 6 months back then and was going downhill. I was facing taking a biological drug and did not want to do that.

I gave diet modification one last try out of desperation really because I'd tried diet mod. many times and many different kinds with no success. This last time I saw enough improvement to continue and my life is so much better.

So you have "met" me and I am managing with non-toxic meds and there are many others on this forum that manage with no meds, just diet mod. and/or supplements. Are we a minority? Maybe because my GI really doesn't believe diet works for UC and has never asked me any specifics even after 2 years of improvement, perhaps because she has seen people get better and then get worse for no reason. But I've never gotten worse, just some weeks there might be regression but when I get back to the diet I get better.

I think there are people like me that do not respond to oral meds. However I am a real believer in mesalamine retention enemas. Good medicine.

Best wishes. Your health should be in your hands not decided by your doctor who doesn't walk in your shoes.
Posted 12/21/2011 1:33 AM (GMT 0)
I've got "mild" left-sided UC and have been on 5-ASAs for two years. I'm now going through my first flareup and hope that what you said about the 5-ASAs losing their efficacy isn't true. I'd rather keep bleeding than take pred.
Posted 12/21/2011 5:19 PM (GMT 0)

imagardener2 said...
...the damage that has been done due to inflammation is not repairable and will leave some degree of tissue damage even when the inflammation in any given area has healed.

Is this true? I've read a couple of posters who have "healed" and when they had their last c-scope their doctor said they couldn't find any trace and it looked like they never had it. Can't point to exact posts but I do remember reading this.

Interesting point. I have thought about remission vs cure a lot. I wonder if "healed" and "cured" differ in medicine.

I never intended to say that damage remained or that healing did not occur, so I was slightly misquoted. One of the hallmarks of UC is deformed gland cells in the mucoal lining. When in full remission, these cells are normal on biopsies. That is healed, I am not sure if it is cured. I only meant to correct the statement that 5-asa and Pred REPAIRED the damage. They do not directly fix deformed cells, nor do they permanently change the immune system.

In some cases, maybe moreso with Crohn's, there might be scar tissue.

According to medical literature, the immune system remains uncured even in remission. I am unsure of the semantics here. I have never quite understood this, but I guess it is the difference with a relapse versus developing the disease again. It is not like some virus hiding in odd places even when bloods test can't detect any virus. I understand why one says something is not cured if maintenance medication/regimen is needed to keep relapse away. Still I am not clear what would need to be done in terms of changing and stabilizing the profile of the immune system in order for the word cure to be used.

You can say the nearsightedness in incurable, and vision must be maintained with glasses - but sometime aging changes the shape of the eye and nearsightedness is cured. For UC the literature speaks of a genetic predisposition and an environmental trigger. Seems it might be accurate to speak of everyone with any genetic predisposition as having UC, except that they have been in remission since birth. It does seem odd that those few getting long term remission (without maintenance medication) are not considered cured in the sense that they now have returned to the disposition-only state.

Possibly once the immune system attacks the host body, it is more prone to do so again. (Sort of like accounts of fat cells never going away even though you get the fat out of them through weight loss. I never understood this because cells do not live forever.)

I would be glad to achieve several decades of no UC symptoms no matter what it was called.

 

Posted 12/21/2011 5:39 PM (GMT 0)
According to medical literature, the immune system remains uncured even in remission.

I've read this also as in "Once colitis, always colitis".
But I agree with you that I don't care what it's called as long as I have no or few symptoms.
This is one area (names and technical jargon and hair-splitting) that doctors do a great disservice to their patients. They repeat what medical school tells them and treat people based on what the c-scope and biopsies show but (I speak for myself) do little to alleviate the day-to-day symptoms of this disease which is what causes many of us so much pain and sorrow. Which puts us at risk for charlatans and quacks who promise the relief that doctors don't provide.

A few years ago I broke down and cried at my GI appointment about how awful my urgency and D was and how the Rx meds weren't helping. That GI could not leave the room fast enough and gave me no assistance or information. She was not unusual in my experience with doctors, rather the norm.

I do not care what it is called just help me make it better.
Posted 12/21/2011 6:43 PM (GMT 0)
It's because our immune system is messed up and that's what is causing the specific attack on our GI tract...if you took the intestines or even just the colon out and transplanted a healthy one in it's place, in time it would become diseased as well because it's the nature of the messed up immune system that is targeting the colon/rectum for UC and entire GI tract for Crohn's.

According to my medical journal from the CCFC back in approx 2004, Dr. Kathy Siminovich and her team discovered a cell on chromosome 5 that allows toxins to move in and out of this specific cell on CD patients, the cell is not functioning properly due to the fact that it is allowing toxins to move in and out of it...this particular messed up cell is one of many that affect CD patients specifically.

There are quite a few newly discovered improperly working cells that are specific to UCers as well, so it's good to know that research is being done on our behalf, but it's just taking so long already for them to find us all a cure.
Posted 12/21/2011 7:03 PM (GMT 0)
immuno-suppressives are not evil things to be feared, Imuran has been around since the 50's and has a very good safety profile.
It's been a miracle drug for me and I'm very happy with it.
this "medicine fate" is a much better life than I had before and I'm living it to the hilt.
Also, I certainly prefer imuran to surgery.
Posted 12/21/2011 7:14 PM (GMT 0)
as the rectum/colon heals, the mucosal layer will repair...if it's producing mucous..that's a good thing.

5ASA meds will do that....and to say it doesn't is bs.

If you have UC, you have it for life, and taking meds to help keep the inflammation at bay and help deal with flares is a commitment.

UCers should take probiotics and fibre...the two work to help condition the colon and help produce butyrate to help keep the mucosal layer in good order.

5ASA meds are also believed to help in preventing cancer...a good insurance (because we cannot say whether we're on the path to get it or not).

5ASA oral/rectal meds ROCK...and if you can take them, do so. Commit, and understand just how they work, because it's not a one-thing deal and whammo...NO FLARE. Have that reality check and do the research and ask lots of questions of those who use it.

A flare can take months to heal...because it's a process in doing so...from the top-down...the rectum will be the last area to heal, so rectal meds can be your best friend.

q
Posted 12/21/2011 7:22 PM (GMT 0)
But if 5ASA meds do work then why do many people still go into flares while taking them religiously? Also consider that some are allergic to them *me* and my mom was as well...and not to mention, some meds (including 5ASA) will simply not work for everyone. Would be nice if they did and if no one was allergic to them, cuz then we'd all have our flares under control and be in remission forever based on what you say about 5ASA's.
Posted 12/21/2011 7:27 PM (GMT 0)
They're treatment and maintenance meds....since flares happen in progression, rectum-upward...both end treatment and maintenance is key.

Yes, we can flare while using them...but a flare is subjective with a whole spectrum of symptoms. My flares have NEVER been as bad as the first year and into the second once I got the hang of the meds and they did their thing.

Don't forget that many don't use them properly....there's patient compliance to consider as well.

If one cannot take them, one cannot. Not an issue after that since it shouldn't be considered.

q

Posted 12/21/2011 7:34 PM (GMT 0)
And consider too, for UCers like me, that for no reason medications stopped working. Where I had once had success with enemas and sulfasalzine; both stopped working and I threw every other drug (5ASAs, 6MP, and prednisone) at it and nothing kept me in remission. In fact I would venture to guess that the #1 reason for use 20-30% who opted for surgery, that all medication failed. Some of us in as little of weeks, some with as long as 25 years or more with UC and in remission.

Sue
Posted 12/21/2011 7:46 PM (GMT 0)
Correct and that simply does prove that 5ASA's do not always work for everyone, even when taken properly/religiously.
Posted 12/21/2011 8:42 PM (GMT 0)
UC is a living/breathing thing, it seems to be mutating all the time. There are times when even prednisone has no effect on it. As an autoimmune disease, UC effects your immune system and body in different ways at different times. Therefore, it's really no surprise that meds have different effects, lose their efficacy over time and sometimes don't work at all.
Having UC has been a real balancing act for me in the true sense of the phrase. Meds, diet, exercise, etc, they all blend together to keep it at bay, All we can do is our best with the info that we have and hope for good health.
Posted 12/21/2011 9:48 PM (GMT 0)
Sometimes I wonder if it is the medicine that stops working and loses it's effectiveness or is it that the UC has become more aggressive and the med just isn't strong enough to keep up. So which is first, chicken or the egg? Not sure it matters for practical reasons, but I do wonder that..
Posted 12/22/2011 1:05 AM (GMT 0)
that would be refractory UC....sometimes nothing works. Paul L tried pretty much everything (trials as well), except maybe cyclosporin...nothing worked, and ultimately he had surgery.

pb4...yes, of course, some don't have success at all with 5ASA...the reasons could be varied (from too low dosage to too high dosage or intolerance).

q
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