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Update: Meeting the surgeon tomorrow!

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Ulcerative Colitis
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Posted 11/8/2010 9:16 PM (GMT 0)
It has been a month since I've posted...got diagnosed with uc sept 21st 2010. I've went to the ER a few times and have been hospitalized twice for a total of 18 days. I tested positive for c diff bacterial infection, and then it came back. It's gone now. I'm out of the hospital and no more bleeding. I'm in constant pain and discomfort. I take a percocet every 4-6 hrs and I can't work or go to school. I'm completely miserable. I did a lot of research on remicade and the like; I found disturbing information. I declined all immunology suppressants and am appalled they were recommended by my gi. Many young children and adults develop leukemia, lymphoma, and other cancers within an average of 30 months of Remicade infusions. That isn't everyone, but it is documented in clinical trials. You can take toxic immuno suppressants, but no thanks for me. I'm done letting uc control my life! I am scheduled for a surgery consult tomorrow at noon! I couldn't be happier, and I pray that I feel better soon and have a smooth recovery. I will keep you all posted!
Posted 11/8/2010 9:30 PM (GMT 0)
Have you also looked into Humira? It's done wonders for me.
Posted 11/8/2010 9:48 PM (GMT 0)
Nope and I wouldn't ever. Humira is a TNf blocker just like Remicade. It has only been FDA approved since 2008 and long term safety tests won't be available for 10yrs, just like remicade. Anytime you take an immune suppressant (humira, remicade...) you screw with your bodies immune system and greatly increase your risk of contracting fatal infections and developing CANCER. The drug companies have made billions manufacturing these toxic drugs At the expense of the people. If you live 10yrs with no symptoms and get cancer at 40... Would you be happy? There's a great enough risk of developing cancer at some point in your life, why help it along? Surgery has it's risks, but it seems that the probable outcome for most is excellent, and you are CURED of UC. Hopefully the medical treatments for this horrific disease works for you wiithout the sides. The FDA imposed black box cancer warning on the humira and remicade is enough to scare me off.

Post Edited (FutureMD) : 11/8/2010 2:51:35 PM (GMT-7)

Posted 11/8/2010 9:56 PM (GMT 0)
good luck to you. i hope you find what you are looking for without having to look very far. the more we learned about the drugs, surgery just kept sounding better and better. not only are the horrible side effects possible, but in many cases they are LIKELY. what's the point in saving a bad colon if you are going to cause 10 other much worse problems. the pharmaceutical companies are founded on greed and symptom treatment. they don't want to cure anybody, it's bad for business.
Posted 11/8/2010 10:06 PM (GMT 0)
Chris' mom- You are so right! Every doctor that I mentioned that to, looked me in the eye and agreed that the sides of these drugs are likely and to a severe extent. My gi doctor didn't even put up a fight when I told him that I would never take any of the immuno suppressants. He willingly gave me a referral to the surgeon. I meet with her tomorrow and I'm so anxious to get this over with!
Posted 11/8/2010 10:16 PM (GMT 0)
 My GI was the same way with me.  He brought up in immune surpressants but when I told him my reasons for not wanting to take them he said he did not blame me and many others refuse to take them.
Posted 11/8/2010 10:28 PM (GMT 0)
you will be much happier post surgery!  it's so great to be UC free!
Posted 11/8/2010 10:45 PM (GMT 0)
God I hope you are right about being happy post surgery ! I want my life back! The immuno drugs just didn't offer much benefit versus the extreme sides. I don't know why anyone would take them without at least trying surgery, unless you have crohns because that isn't curable.
Posted 11/9/2010 3:26 AM (GMT 0)
well just think of it this way, you KNOW you are miserable now you KNOW you can't keep living like this.
So yep, there is a rare chance that you might not like life post surgery, but its only a chance, and a small one, none of us regret it, only regret that we didn't have it sooner!
and even with crohns most patients go into remission and are med free. But the good thing is with UC, its GONE all the way!!! That's it, all gone!
and don't let anyone tell you you are giving up by having surgery, you aren't its the ultimate win!
Posted 11/9/2010 3:38 AM (GMT 0)
With me, I had c-diff as well for the first two times, in 2000 (antibiotics) and then in 2004 (incidential doctor's say). I personally think that the antibiotics originally caused this. Anyhoo, I can relate to how you are feeling right now. The prednisone is probably not helping any for anxiety right now though, I used the stare the ceiling and then the ceiling corners, no sleep at times. But things will settle down eventually, it really does.

I ended up in the hospital in 2004 as well but required 2 units blood transfusion and I thought the worst too. But one minute at a time is all you can do at the moment and think ahead of how better you will feel when you come out of this.

With my age and how long I have been with UC, yes, there is the possibility of surgery at some point down the line but not right now for me. I sort of look at that as a last resort. I've had three flare ups in the past 10 years (since 2000) the first one lasting about 4 months, the second about 5 months and the third was the longest as I chose no prednisone help was about 6 months. I think maybe on my way to another but I've got a bit more experience and expectations of best ways to handle this, mostly through this forum with not too much help from my doctors other than prescriptions. I do have a gastroenterologist (finally) appointment in March 2011, we shall see what he says about all this too. My other gi was in Vancouver but I moved to Ontario for work.

So, although I'm not pro-surgery right now, I guess it will all come down to our personal decision. That my story for now though, so all the best!
kat
Posted 11/9/2010 3:41 AM (GMT 0)
I am waffling back and forth when it comes to Remicade. At first I was convinced I would never take biologics, but several people I respect have told me that they have improved the way they monitor people who take it and this has made it much safer.

Not sure about the cancer risk. I am older anyway, and most of the reports seem to involve younger people who took it.

Overall, I am still leaning toward surgery if I can't get off the steroids which seem to be the only thing that can touch my current flare. I wish I could try that drug they are testing in Europe but it won't be available here for years, even if they get good results in the trials.

Best of luck to you and please keep is posted!
Posted 11/9/2010 7:10 PM (GMT 0)

Here is an example of a study that looked at the safety of long term Remicade use in Crohn's patients.

See study here: http://www.docguide.com/news/content.nsf/news/852571020057CCF6852572E300671830

Quote from study said...
Importantly, the investigators found, through a standard statistical analysis of the data, that neither continuous nor intermittent use of infliximab "remained statistically significant predictors of an increased risk of [serious infections] relative to other treatments."

They concluded that, "infliximab-treated patients have an increased risk of serious infections but multivariate Cox proportional hazard analysis suggests that this increased risk is associated with prednisone and narcotic use, and not with infliximab therapy."

Posted 11/9/2010 9:14 PM (GMT 0)
I would add that an argument can be made for trying biologics for a few years to buy time, in case they work well... it may allow one to find some other magic bullet that is less toxic (in my case, I have been trying out helminthic i.e. worm therapy for example) or in many cases, especially shortly after the intiial onset of UC, sometimes UC can just burn out for very long spells of many years (spontaneous remission) - and one can always give up on the biologics later- they tend to only work for a little while and then one develops an immunity to them and they end up just metabolizing straight out of your blood- that is my impression on having failed Remicade after a few months and now not getting much if any benefit from Humira. But opting for surgery is never a failure - more power to you to give the finger to his stupid disease, and best of luck.
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