Hi :)

[lacibug34]

I'm Laci, I'm 26 years old and was diagnosed about 11 years ago.

When I was diagnosed, I was suffering from peri rectal problems as well as a fistula and once it got so bad I was holding BMs for up to 14 days and miserable, I finally went to the dr. After months of different tests they decided I had Crohn's. It was also active in my terminal illeum.

After that I went on a series of different meds to try and get things in check...prednisone, imuran, cipro, pentasa, flagyl, remicaide, entocort,....and I'm sure a few others that I'm forgetting, lol.

Nothing really seemed to be helping. About a year after diagnosis I developed a bad abcess and had to be flown home from my Senior vacation to the Florida Keys for emergency surgery.

Shortly after that, I changed Doctors and the new one was able to find the perfect balance of Remicaide and 6 mp. It put me in complete remission and as long as I came back every four weeks for my infusion I felt great

At 19 I became pregnant with my oldest son. After lots of discussion, we decided to stop the Remicaide during pregnancy, keep a low dose of 6 mp, and see what happened. Guess what, I stayed in remission! A few months later I moved out of state but since I was doing okay did not find a new dr. right away.

I was completely off my meds by the time I was 20, completely in remission, and feeling great. I continued not to seek medical attention because I felt okay and did not want to take meds that really made me feel worse when I wasn't NOTICING the active disease. I did get one colonoscopy a few years into my remission. It detected the same active disease in my illeum but elected not to take medicine because most of the time I felt okay.....This was a bad decision.

After more than 3 months of going to doctors with abdominal pain and awful fevers, and being told everything from kidney stones to ovarian cysts were the culprit.... I went into the ER this past January where they found I had 2 large abdominal abcesses and 2 very small fistulas feeding them, not to mention, small intestines that were 3 to 4 times their normal size!

Finally after 42 consecutive days in the hospital, numerous complications and infections, as well as a resection of about 1 ft of small intestines, my illeocecal valve, and a few inches of my colon, (7 weeks ago) I am recovering It is taking so long because my incision kept getting infected...as well as a central line, and a anything else that could possibly get infected, lol, and a couple of botched drain tubes.

My new doctor is very adamant on starting me on imuran rather than remicaide which I have asked for. All imuran has ever done for me is make me sick so I'm a little frustrated. He's the only GI in the area though.....

Thanks for listening to my ridiculously long story!!

 

[Nyx]

Hi! Welcome to the forum...sounds like you've had a rough ride these past few months! Glad you're getting sorted though and hope your recovery continues to go well. Why won't your doc put you on remicade?

 

[Crohn's 35]

:welcome: Hi Laci, glad you found us. Sorry you have been thru alot, and a resection that is botched is painful...been there done that.

I am with Nyx on going back to Remicade, would be a wise thing to do. I have seen some mom's stay on Remicade but NOT imuran. I would try and get back on it, if it aint broke dont fix it. Imuran made me ill too.

Lots of info on here.. take care.

 

[dreamintwilight]

Wow, what a story! Glad it sounds you are finally back on the road to recovery. I agree with Pen and Cindy about asking again about Remicade. They can't force you to take anything you don't want to Good luck with the healing process and welcome to the forum!

 

[ameslouise]

Hi Laci and Welcome!

What a story! You have been thru a lot at such a young age. Glad you were able to have those years of remission and start your family.

It is my understanding that once you are on Remicade, you need to stay on it. If you come off it for any length of time, you run the risk of building antibodies (not sure if this is the right word) to it and it will be ineffective or you will have a bad reaction.

This is what happend to me. I was on it for 3 doses in 2002 for UC, came off it when I lost my colon and didn't need the drugs anymore. I was re-dx last year with CD, started the Remicade again knowing the risk, and was unable to tolerate it. Check with your doc for a more clinical explanation, but this is what I was told in my case.

Good luck! I hope you find the right cocktail this time! -Amy

 

[Astra]

Hi Laci
and welcome

Yes I'm with the others about the Remi, Azathioprine made me ill too!
I read that somewhere too, that Remi loses it's effectiveness if there is a break of 16 weeks or more.
Glad you found us, you've been thro a lot for such a young lass!
Lots of support for you here
lotsa luv
Joan xxx

 

[lacibug34]

Thanks everyone! I know that remicade is sometimes less effective after being stopped and sometimes causes reactions but not always so I wanted to try it. He thinks we should do imuran first just to see then possibly move on to remicade if it doesn't work or I can't tolerate it. I get frustrated because I already know I can't handle it...

I'm miserable right now. Since the surgery I have had awful diarrhea that is basically straight bile due to the valve being removed. They gave me Colestipol to bind everything and stop that....it does help the bile and the burning from that and makes it a little better (I'm going 6 or 7 times a day instead of 10 or 12 and it's not waking me up at night). But over all I still feel awful, I have to go all the time....I'm crampy and nauseas all the time.....the colestipol gives me awful painful gas....and I'm just feeling a little whiny about it, I guess, lol. Has anyone taken Colestipol? What are your thoughts? It seems like if I miss a dose by even an hour I am back to constant bile for hours. The Dr said I could double it but if I do that the gas pains are unbarable.

I am trying to get a referral to see a different GI. He is about 115 miles away but is supposed to be amazing so it could be worth it. I like my Dr. on a personal level, he's very nice and seems to genuinely care but it seems sometimes like he doesn't have a lot of experience with Crohn's.

 

[lacibug34]

I went to see my Doc again and this time he agreed to start Remicade I was in the hospital over the weekend with severe dehydration over this.... Hopefully the Remicade will prove to be the miracle it was before.

I'm getting nervous about my job though. They have been great and incredibly patient about all this and the fact that I was out for about 2 months.... Now I feel like they are losing patients.... I have missed at least 1 full day (sometimes more) each week since I have been back either from being sick or from doctor visits....now I can add leaving for Remicade treatments too.... I don't know how much longer they will understand and I know this is not fair to them. I can't afford to not work though, I am a single mom of two and HAVE to work! Does anyone have any input about the work situation?

 

[Astra]

Hiya Laci

Well done for getting Remi, really hope it works for you!
Not sure about the work situation, but I do know that they can't get rid of you cos you're ill! That's unfair dismissal and against Employment Law and Disability Discrimination Act. (in the UK it is)
Time to sit with your boss and explain the situation, offer to work overtime, come up with flexi hours, or offer to make the time up. Either way, employers do have a duty of care for their employees. Try not to stress about it, but making your boss aware, and that you're not pulling a fast one, is the first port of call
Good luck
xxx