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Crohn's Disease
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Posted 1/15/2013 11:43 PM (GMT 0)
Hello everyone, I have lurked around this website for awhile looking up tips, etc. and decided I would get involved.
So here is my background...

Im 20 years old (sophomore in college) and have had crohn's for 10 years. All the anti-TNF drugs stopped working (humira, cimzia, remicade, etc) and the summer before I began college I had an ileostomy for 3 months. I had the reversal before school began but as a freshman had somewhere between 6-8 outpatient surgeries to drain abscesses. This past summer I was given another ileostomy hoping everything in the rectal area would clear up, but it hasn't. Pretty much I have a huge rectal "cavity" that keeps filling up with pus. I have a very complex fistula tract that goes up to my tailbone. Last week I had the cavity drained and a malecot catheter was placed (because the seton rings were not effective enough). I also just started taking Cipro.

On January 2nd I had my first tysabri infusion (I tested negative for JC Virus). Taking tysabri is definitely worth the risk to me because it's either this or a permanent bag pretty much, and I hate the idea of that (especially since im only 20 y/o and in college). So far I havent noticed any difference in energy or pain, but I have noticed that my ileostomy output is the thickest it's ever been these past 2 weeks, so hopefully this is a sign for good things to come. I read that most patients don't feel significant effects until there 3rd or 4th infusion. I will try my best to update my progress with the tysabri to help other people who are considering taking this drug.
Posted 1/16/2013 3:09 AM (GMT 0)
Hello jack2011
I am sorry to hear of the problems you are experiencing, i have learned that living with Crohn's myself for 30 years (I am 43), anything can happen.

I was interested in your post because I too was looking at this site for a while and I wrote a post about starting Tysabri about a month or so ago. I am very nervous about it even though I have given the go ahead and start my first infusion on 8th February. However I was tested positive for the JC virus. I think this is what makes me worry more. The trouble is the more I worry about it, I seem to lose weight quicker!
I guess I just wanted to know what you felt like after and if you had any effects. I have been on Remicade for 8 years but it has now stopped working for me. I have had problems with fistulas also and if I don't try the Tysabri I will be looking at a Colostomy bag surgery. I feel I have to try everything before going under the knife again.

I look forward to hearing your updates as I don't know of anyone else on this. I hope you start to feel better.

Skylar
Posted 1/16/2013 7:10 AM (GMT 0)
Hi jack2011, Welcome to HealingWell. I hope Tysabri works for you
with all these drugs it takes time to get into our system. Keep us up to date on how it goes.
Posted 2/5/2013 10:38 PM (GMT 0)
hey all....

i don't have Crohn's but I take Tysabri for MS. I have been on the drug for 5 years. I have tested positive for the JC virus...but a large number of people do. even if you start off with a negative result it can change to positive. It does not mean that you will get PML, it is simply a testing for the antibodies. Probably better to test negative, but I will take the risk when i consider the alternative. It has halted the progression of my disease. I have my life back... I know that Tysabri is not for everybody, and i don't have any experience with it being used for Crohn's, but it has been great for me. I'm 53 and was diagnosed in 1999. would be glad to visit with anyone about it at any time.

[email protected]

Jack
Posted 2/8/2013 5:01 AM (GMT 0)
Had my second infusion today. Pretty uneventful. The usual hour for infusion and an hour of observation afterwards. Feeling a bit fatigued like last time but thats about it. The time between the 2 infusions a gained a tiny bit of energy (i repeat tiny, haha) and my ileostomy output continues to be much thicker. Still have a lot of rectal pain because of fistula tract and rectal cavity, and am taking Norco about three times a day for pain. Hopefully I get a bit more energy this time around and the 3rd and 4th infusions (where most people notice the most improvement) helps with the pain.
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