25 years 4 small intestine surgeries need advice

[david lanham]

New to forum (sorry about spelling before i even start this)

I was diagnosed at 19 with Crohn's I am now 44. I have been on all these drugs at one point: 5-ASA/Mesalamine, Cimzia/Certolizumab, Humira/Adalimumab, Imuran/Azathioprine/6-MP, Methotrexate, Prednisone/Entocort, Remicade/Infliximab, Surgery

My last surgery 3 1/2 yrs ago left me with about 9 feet of small intestine. I now have active Crohns in Large intestine, Rectal area and the same area in the small intestine. The rectal area is so strictured down that my Gi doctor had a hard time getting the scope to pass that area. Will probally have a balloon passed through those areas rectum and small intestine to give some temporary relief.

My Question and concern is about trying Tysabri to help combat this disease and save me from colostomy and removal of small intestine and rectum.
Looking for advice from those who are currently on Tysabri. Liteature I have read show better results after surgery in obtaining remission than those with advanced disease. I know about the side effects of the drug now just wondering if it can truly help ?

 

[David]

Hi David and welcome to the community. Wow, you've been through a lot

First off, since you have Short Bowel Syndrome, I suggest you give this a read.

Here's some threads on Tysabri you may want to check out:

http://www.crohnsforum.com/showthread.php?t=23070
http://www.crohnsforum.com/showthread.php?t=36390
http://www.crohnsforum.com/showthread.php?t=34702

And in this article I reviewed, they had the following explanation about Tysabri:

Sometimes people with Crohn's don't respond well to anti-tnf because that's not the primary component of their inflammatory response. In that is suspected as the reason for a primary non-response, trying natalizumab (Tysabri) may be worthwhile as it isn't an tnf blocker and has shown efficacy when people fail anti-tnf therapy. It does increase the risk of progressive multifocal leukoencephalopathy (PML) so that risk needs to be weighed.

One final thought for you, research Low Dose Naltrexone.

Again, welcome. We're here for you.

 

[Angrybird]

David has already covered things with your query about the Tysabri but I did just want to say hello and welcome to the forum. I am sorry to hear that you are having so many troubles with the tum and really hope that this can work for you and you don't have to face another surgery.

Please keep us updated on how you get on.

AB
xx

 

[david lanham]

I really appreciate the quick response from both you and David. I have a wonderfull Gi doctor that I have been with since my inital diagnosis back in 1987-88. I really think he is getting frustrated with everthing we have tried and is now searching for a infushion center and nurologist that will administer tysabri and monitor as well. I live in Louisville, KY and may have to go to Lexington KY for the infusion still waiting on a call back from my GI doctor with his search results.

I have a great Surgeon at the Clevelnad Clinic that has done my last two small intestine surgeries but it is a 5 1/2 hour drive for me to see him for a consult on the latest findings of Crohns in large intestine and now the disease has strictured down the rectal area along with the prevsious area in the samll intestine being strictured down with scar tissue and active disease. .

I really need some glimmer of hope with Tysabri and am praying that this can give some type of relief in the near future before I have no choice but to see my surgeon.


Thanks for all the support.

David

 

[Kip1]

Hi David it seems you have really been through the mill with this disease.
I have no information for you regarding Tysabri but just wanted to send my support your way.

 

[David]

I'm glad you're happy with your medical providers, that makes a huge difference.

I pray the Tysabri is the answer you need as well. Please keep us updated and let us know if there's anything we can help you with.