Entyvio Time

After a couple years of remission I've been having a pretty bad flareup.

Background: 47 year old male
Diagnosed with Crohn's in 1995
Bowel resection in 1997
numerous perianal fistula abscesses with surgery
Remicade(2009) put me in the hospital for four days for a reaction
Humira (2012) another reaction but no hospitalization.

Current Meds:
Prednisone 50 mg
Imuran 200 mg
Omeprazole 40 mg
probiotics
Flagyl 3X500 mg
Hydrocodoen 10/325 as needed (usually 4-5 a day)

Sorry if this is long, I'm really in poor shape right now and I'm suffering a lot of side effects from the prednisone and my mind is playing horrible tricks on me. I have had cronic diarrhea for almost 20 years (short bowel syndrome) and in the past three months the amount of blood in my stool is troubling but the drugs are starting to slow that down a little bit. Everyone here can relate to the big D (diarrhea), man does it sucks because you have so little time to make it to the bathroom, I have only once had an accident in twenty years and I believe I have the worlds strongest sphincter. Having a public bathroom phobia also sucks but i'm getting off topic.

Tuesday the May 10th, I'm starting Entyvio infusions. I have spent the last week reading everyone's experiences with this newer biologic medicine and I'm hoping to cope well with the side effects others have talked about. These forums offer such great stories of peoples successes and failures dealing with this #$%^-ing horrible disease. Wish me luck my Cronie brothers and sisters. I will report back on how it went.


Remember you are a survivor!
Brian

Hope the Entyvio helps Brian! Yes please keep us posted!

Brian,
I had 3 infusions now, seeing some slow change, I get mine in the afternoon and then head into work. 5:30 to 4 am shift. Nothing a pot of coffee won't cure over the shift. I walk, climb and inspect most of the shift. the only side effect i seem to get is I'm chilled most of the time. I'm in a mid 70 environment most of the time. I
am aware of the temps because I am using an IR infared camera and am changing the background temps all the time. The walking really helps though.

T
Better Living Though Chemistry....DuPont's line

Man you guys are so inspirational! I really appreciate everyone of you. Just got done with my first infusion and I feel fine, maybe a little chilled, wow IR camera, big time! I did take the day off and now I am wondering why, oh well I needed a day off as I usually work way too much. I see my GI tomorrow and even-though I'm feeling no entyvio side effects I'm still dealing with horrible Pred side effects, hot, shaky, no sleep, bruising, etc, etc, etc,... I really want to get off this medication. The man reason I have been taking it is for the downstairs bleeding problem that wont stop, and hasn't. Do any off you have this problem with the blood (a lot)in the stool, and has it stopped?

fighting the fight!
Brian

Thanks NiceCupOfTea for the advice. Im almost a week into my Entyvio regiment and I know it's too soon to get any relief from the medicine, but I'm feeling better. It might just be mental.

I went to my GI last week and went over recent test results. You all know how much GI doctors love to test for everything. One of the test I did in mid April revealed I had a C-diff infection. I knew I had a colon infection because (stool test) my GI had his nurse call me and put me on Flagyl, Why is this important? Well when C-diff bacteria levels become elevated it can put others at risk also. You really have to step up the sanitary cleaning process. Had I known I had C-diff I would have done a total house scrub. My point is this: to really listen what your Doc is saying and ask questions. If you are too sick bring someone with you to ask questions. *stepping off my soapbox*

Another stool test is being processed to see if C-diff levels are back to normal, I believe they are. Entyvio does not work well when you are fighting an infection.

I hope everyone if doing well.
Brian

Brian,
You're on some high levels of Prednisone and Hydrocortisone. Is that still the case now that you're on Entyvio? I've been at those levels in the past too. I finally had to go to an Ileostomy, Remicade and 6mp. I'm still at 20mg Hydrocortisone and looking at a long road to get off of that.

The Ileostomy is designed as a temporary solution. I keep my colon and divert stool through the stoma which is located where the small intestine connects to the large intestine. This gives my colon a chance to heal. I'll have the Ileostomy for a year or two until my colon is healed and then it will be reversed. When they reverse it, everything gets put right back where it was and should start flowing again like the good old days.

I wanted to let you know that there is a plan B that you can discuss with your doc if you need to in the future. I know you're working the Entyvio track now and I hope that's a huge success! Be aggressive and keep after it. :)