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Ulcerative Colitis
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Posted 9/6/2013 12:06 PM (GMT 0)
I have had UC for 30 yrs and have been in remission off and on thanks to remicade for the past 71/2 yrs but have experience a reaction twice now-on my 59 and 60th infusion. I can no longer receive it and don't want to try tysarbi. Nothing else has worked. Looking into the J pouch surgery I live in Indianapolis and would like to go to the Cleveland Clinic. I have no idea on DR's or surgeons. I don't feel comfortable asking my current GI because every time I mention it-and I have at several office visits she gives me the worse case scenario. I have been online trying to get as much info as I can and have read some pretty positive outcomes. I just need a push in the right direction. So if I can hear some input on those that have had the J pouch surgery, whether they had 2-3, surgeries, surgeons, GI's and outcome-I'd really appreciate it.
Posted 9/6/2013 12:08 PM (GMT 0)
There are some folks on here who have have j-pouch surgeries, but I'm not sure if anyone has gone to the Cleveland Clinic.

I bet you could find someone on the jpouch.org forum who has, though!

And as a side note, my sister lives in the Indy area (Zionsville) and I'm originally from Terre Haute.
Posted 9/6/2013 12:48 PM (GMT 0)
If you are considering Jpouch surgery, then I recommend reading the blog of one of the regular posters here (screenname bootstrap):

http://ronnielee-fightingforit.blogspot.com/

She blogged throughout her jpouch procedure, describes a lot of stuff in detail, and provides tips and such.
Posted 9/6/2013 12:50 PM (GMT 0)
Thank you for your quick response. I love Zionsville. :)
Posted 9/6/2013 12:54 PM (GMT 0)
Thank you-ipoop. I did read that and one of the reasons I'm going to do it. I was getting discouraged with all the negative read- I know it's not a going to be pretty but I feel I need to at least give it a try. :)

Post Edited (Subrew) : 9/6/2013 6:57:08 AM (GMT-6)

Posted 9/6/2013 1:03 PM (GMT 0)
Never heard of tysarbi. I'm not sure what you mean by "been in remission off and on thanks to remicade for the past 71/2 yrs ". Are you saying that remicade would put you into remission but then you would stop it and restart it during periods of flares? If you took it continuously, do you know why you would start flaring again while still taking it and then go into remission again? I know you have had this disease for many years but I can't help but think you are "rushing" into surgery. I get the impression that the docs have steered you into this decision. Have you tried any probiotics, supplements, or diet changes? How about Uceris? There is a new safe biologic coming out early next year which has showed very promising results. If it is time for surgery then good luck to you but I sense that other good options haven't even been presented to you.
Posted 9/6/2013 1:54 PM (GMT 0)
Hi Garylouisville, I had a reaction 3 yrs ago while on remicade. I was put on humeria-it did nothing and went into a horrible flare that took awhile to straighten out. Was put back on remicade with premeds and didn't react till recently. Remicade has been good to me for much of the course but I didn't have the same response all the time-depending on factors such as-if I was on other meds, illnesses, stress or no reason at all. I have ran the gament on meds and diet throughout the years and I don't want do a third biological which is what Tysarbi is. I showed precancerous cells last scope. If it hadn't been for remicade I would have had the surgery already. My GI wants me to have an ileostomy. She in fact as told me "not to be so vain." I am not new to the UC world, I just was able to take a break a bit and don't want to go back.
Posted 9/6/2013 4:42 PM (GMT 0)
Sounds like maybe that is the best option for you.
Posted 9/6/2013 5:14 PM (GMT 0)
You've had UC for 30 years but been in remission for 71/2=35.5 years?
:)
Have you tried Humira? Remicade worked well for you so its worth a shot.
Posted 9/6/2013 5:20 PM (GMT 0)
Sub,

There's another option I doubt you've been told about: LDN, low dose naltrexone.

It put me in remission.

Check out the studies done by Dr. Jill Smith of Penn State.

Also, you can read all about it on the UC Resources pages (there's a long post on it).

It's cheap, not Big Pharma, almost no side effects.

Another big plus for you with LDN is that with your pre-cancerous cells, LDN has been used successfully to treat different cancers.

So, imo this would be the 1-2 punch for you.

 

Posted 9/7/2013 12:40 PM (GMT 0)
InSoFia, this does sound interesting. I am going to check into it. Thank you
Posted 9/7/2013 1:06 PM (GMT 0)
Subrew,

My pleasure.

Let me know if you have any questions.

Feel free to email me if you like.

Posted 9/7/2013 1:25 PM (GMT 0)
I cannot believe a dr would say "don't be so vain"! I think I would have died right there of shock.

I hope you find relief soon.
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