Remicade treatment

[Franko]

Last week i had my 3 rd Remicade treatment.

I have felt no different and no change to my fistula clearing up.

On Aug 6th i was back at Surgeons and he re open my opened where my Seton band was for the last 5 months. He did not like the look of the healing process so he opened up about 1 inch of the 3 inch cut.
This is healing up.

Last weekend i had a terrible pain in my rectum and pain down my left leg. I could not walk it was so painful. Got home and found a large lump by my rectum on the left side, near where seton had been.
I soaked it in warm sits bath and finally the lump broke and drained most of the night and into the next day. All pain is now gone for the time.

I do not feel the Remicade is helping me at all.

I was told if there was any improvement it would be after the 3 rd treatment.

Any one else out there with same situation, AND if so.

WHAT did you do next.

Please and Thanks,

Can hardly sit down Franko.

 

[My Butt Hurts]

Do you know what your dosage is? Maybe you could get your dosage raised.
I sure hope that lump isn't a second fistula coming on.
I'm sorry you're not seeing any improvement. Hopefully soon you will.
Welcome to the forum.
MBH

 

[Crohn's 35]

Hey Franko Welcome :bigwave:. Sometimes the Remicade may take longer for you, as everyone is different you could need more time because of your severity. AS mbh says they may need to up the dosage. Some people start to have some symptoms come on just before the next infusion.

I see you are in Toronto, are in right downtown or GTA? I assume you have a good Gi? Dont be leary of calling your doc or get an appt as soon as you can. Good luck.

 

[Franko]

Update remicade

Ok since my last post.

I have been on Remicade since last June 2010

I had several surgeries to clear up my fistula. No luck .....After seeing many Doctors i was finally referred to a Co-Rectal surgeon.

He took ONE LOOK and told me what i had, scheduled me for surgey and placed a Seton band thru my fistula and i was on my way to being healed.

Continued on Remicade throught the healing process and have NOW had no problems since last November. I wanted to be sure all ok.
I have a indentation on my cheek butt 1 inch wide and 3 inches long.
This is where the Seton came out and the surgeon had to remove all the tissue
to insure all would heal properly. It is still sore to sit for long periods.

UPDATE, i went back to my GI Doctor about now getting off Remicade since i am all healed. He confirmed from my test that i do NOT have Crohns.
I said great so i stop this stuff.

His reply was NO, you must remain on it . The fistual is a pre symtom of Chrohns.
The Remicade will keep the fistuals a bay and they should not return.
If i stop the treatments and they come back i am in real trouble.
He said come back in 1 year and we will have another look.

Has anyone out there had the same situation and what did they do about it.

Your comments would be appreciated.

txs, NO pain, No problems Franko

 

[moogie]

Our plague does work that way,

I was first operated at age 13 and Had no symptoms from 13 to 33 years of age when all of a sudden all hell broke loose.

I for one would follow my docs recommendation and keep on the meds. Better safe than sorry

 

[Derek Ireland]

Hi Guys

Not sure if anyone will be able to help me. Im living in Ireland and going to Toronto to live for a year. I have Crohn's disease 7 years now and i am on remicade the 4 years or so and its working worlds for me.
Before i enter Canada i have to get Health Insurance and i intend to get cover that will allow me to get my remicade over there.
Can anyone tell me where is the best place to be treated. Would really appreciate the help.

Derek

 

[Carlitosway]

my gi is in Mount sinai hospital in toronto thats where i was Dx and i was diagnosed the first time i went there so its a good hospital

 

[Mountaingem]

I would recommend the meds as a preventative too. I have had Crohn's since I was fourteen (I am now 39) and have been on and off the meds. As others have mentioned all hell broke loose. I developed iritis, fistulas, AS, and enteropathic arthritis as a result.

I completely get why you would rather stop the meds, but it is sooo not worth it. Better to save yourself some pain down the road.

Glad you're doing so much better!