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Failing remicade for UC, possible total collectomy, and j pouch procedure

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Ulcerative Colitis
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Posted 2/2/2012 8:41 PM (GMT 0)
I have now taken 4 doses of remicade and still bleeding and having UC symptoms my GI specialist is saying that I may need to go for a total collectomy and j pouch procedure. I was wondering if anyone could let me know if they've gone through what I'm going though. What they're life is like after the surgery if they have to find jobs to correspond with what's been done. I want to get a job in law enforcement and concerned that if I go through with it my dreams will be shot as well. Thanks
Posted 2/2/2012 8:43 PM (GMT 0)
have you had any improvement with the remicade? Have you tried humira?
Posted 2/2/2012 9:05 PM (GMT 0)
You should check out the ostomies forum. There are a lot of UC'ers over there. I think the vast majority of people have successful j-pouch surgery and have improved lives when medication cannot control their UC.

Also, check out this thread, this guy has a j-pouch and does motocross-
https://www.healingwell.com/community/default.aspx?f=38&m=2328545
Posted 2/2/2012 9:16 PM (GMT 0)
There are many cops with jpouches. I had the surgery 11 years ago; best decision of my life. I'm healthy, happy, take no meds, and eat what I want. You can get more info at the ostomy site or at www.j-pouch.org Mind you most people that post are those that are having problems, but there are those like me that help people with questions. Most jpouchers do not have problems and are out living life. Do get the best possible CR surgeon, ask for recommendations. A good outcome is very dependent upon an excellent and skilled surgeon.

Sue
Posted 2/2/2012 9:29 PM (GMT 0)
Have you looked at information at the website cureforulcerativecolitis.com ?
There is a lot of info on the site including the use of alternate therapies like slippery elm bark (nature's mesalamine).
If you search for posts by InSoFla on the UC site, you will see a person who was in bad shape who responded very well to changes in diet and using a lot of natural supplements and LDN. websites: www.lowdosenatrexone.org and ldnscience.org
I have recently started on LDN (low-dose natrexone), supplements and dietary restrictions.
Am experiencing some success.
I think you should know about all available options before making a decision about having a non-reversible surgery.
Posted 2/2/2012 9:42 PM (GMT 0)
Kingcrapper,

Sorry you are in this predicament. The same thing happened to me. Remicade was my last resort and it didn't work. You may want to get the 5th infusion to see if it kicks in then but after the 5th infusion if it doesnt work then most likely it won't. I kept going for a whole year hoping it would work...I was in denial big time. So I ended up having j pouch surgey and I was terrified. But it all worked out great and it has been such a blessing. I'm glad now the remi didnt work because I no longer have to take any drugs. I just pop my multi vitamin everyday and that's it. I can eat and drink whatever I want again. My UC is completely gone for good.

I know it's really scary but the surgery has a 90-95% success rate. I would try whatever you are willing to try before having surgery but just know if you end up there, it can be a huge blessing in disguise. I wish I had done it a lot sooner but hindsight is 20/20. If you have any specific questions, I would be happy to try and answer them for you. Oh and i know of a firefighter on another forum with a jpouch. He does just fine!
Posted 2/2/2012 10:54 PM (GMT 0)
I am in the same situation as you but I have been on remicade longer. I started remicade in July of 2009 and my scope last years just showed mild inflammation in the right side of my colon. I went in for a scope last week and my colon has severe uc throughout my whole colon. So, it is getting worse. My symptoms are still good, I go D about 4-6 times a day but I am getting alittle worse each couple of months. I am on the dreaded pred and am going to talk to my doctor but she said the remicade isn't working my levels are fine with it I have to talk about different med options with her she said but I don't have many left(really???? lol ) So, I will try humira and methortixate but that is about all that is left. I can't really give you any advice but know you aren't alone. It sucks. I know I will need surgery sometime it is just scary to wrap my head around. But I think some 95% of people who have a J-pouch are happy with it.  Those are good odds to me. Good luck!!!
Posted 2/3/2012 12:56 AM (GMT 0)
The only thing is that I'm still very young I'm only 20 years old and never had surgery before so I'm a little worried. I was diagnosed last march. I appreciate all of your inputs.I think I might go through with the surgery.I just don't want to be dependant on a drug for the rest of my life I would like to live my life and not worry about the possibility of cancer later in life either.
Posted 2/3/2012 1:23 AM (GMT 0)
Being young is an advantage having surgery. I was 42 when I had it done and all is good here. And just some added encouragement: my sister has a jpouch too and she's had it for 20 years now with no issues at all. They are good for the long haul! Just make sure you seek out an extremely experienced surgeon that has done many, many of these procedures.
Posted 2/3/2012 1:41 AM (GMT 0)
Where did you have it done?
Posted 2/3/2012 1:48 AM (GMT 0)
Kingcrapper, I'm was in the same position as you. Remicade stopped working - actually, I'm not sure it ever did as it may have been the Prednisone. So I was switched to Humira a few weeks ago. No results at first so I started to consider surgery. Actually, I decided surgery wouldn't be so bad and I began to look forward to being drug free as I felt they weren't working for me. Then the Humira kicked in and things are getting "better." It's tough as once you decide surgery is the direction you want to go in and the meds start to work, you feel a little deflated because you've committed yourself to an idea. If the Humira isn't a "miracle" for me, I think I will pursue surgery as I've already lost 2 years feeling miserable. It's a tough call but if the drugs are only postponing the inevitable, I wanna get this done and behind me. Good luck and let us know what you decide...

Matt
Posted 2/3/2012 2:04 AM (GMT 0)

kingcrapper said...
Where did you have it done?

Jefferson University Hospital in Philadelphia .
Posted 2/3/2012 2:11 AM (GMT 0)
I'm in hamilton, ontario canada. The surgeon that does the laproscopic potrion of the surgery is the best, but the reconstruction surgeon I'm not sure I will have to look into much more.
Posted 2/3/2012 2:35 AM (GMT 0)
If you go to jpouch.org I know there are some Canada people on that forum. You can ask there about surgeons. Maybe someone can point you in the right direction where you live.
Posted 2/3/2012 3:48 AM (GMT 0)

possessed2skate said...
If you\'re going to be a cop with a pouch, I believe your best option is to get a desk job. If you don\'t do that you better learn to follow a strict diet or stay away from food as best you can while on your shift.

I wouldn't say that at all. There are athletes, cops, firefighters, the list goes on who have j pouches and that's a fact. You can do and be whatever and whoever you want.
Posted 2/3/2012 4:01 AM (GMT 0)
Kingcrapper,

I am 22 and just had step 1 of 3 of the j-pouch surgery. I do not regret it at all. Humira was the last drug I tried. I did not want to spend the rest of my 20's being sick. You will be able to pursue your goal in law enforcement with a j-pouch. With UC on the other hand...you can't be handcuffing the bad guys with the fear of having to run to the bathroom! With a j-pouch you will have control over your bowel movements.
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