All about me

[Staceyscarlete]

I'm on here so often lately I figure I might as well share my story with you too. Since childhood I have had tummy issues. I missed a lot of school but they never gave me an answer and I just sucked it up. It got better in my teens but when I turned 25 I suddenly started noticing my BM's were irregular. I had just had my second child and thought it was somehow correlated until regular tests had no answers and I was sent to a GI for a colonoscopy. He said he was 100% certain from experience and the biopsy that I had Crohns . I took Salofalk for 1yr and a half with no really good results. Finally at the end of 2010 my Crohns was getting to a point of serious flare. But I was suddenly faced with kidney infections so serious that I was hospitalized. They returned 3 times as antibiotics weren't taking it away. At one point I had a total scare with some left sides numbness that the doctors were afraid to categorize as mini stroke but were uncertain of what it could be. Once the infections and numbness subsided I went into full flare. I lost 15lbs in 2 weeks which brought me to 98lbs. I couldn't sip on water without rushing to the bathroom. I had days where my son missed school bc I simply couldn't move. I was on 40mg of pred for 8 weeks. I finally tapered off to nothing by the end of 4 months and was drug free all summer. Now in September I started back up but this time my doctor put me on imuran aswell. I've been taking it for 5 weeks and am hoping this will be the solution. Wish me luck in finding some relief finally.

 

[Crohn's 35]

Hi Stacey we have met . It is hard to find the medication suited for you. I know when my daughter was 4 and was the same I lived on the couch and in the hospital alot before my diagnosis. Soon after I had a resection. Best thing I ever did but come to realize (before computers ...1992) I wasnt looking after myself and wished I did because it led to surgery #2. Big mistake from the small town doctor. If I had found this place or if it existed sooner, my life could of taken a better turn. I have been here over 3 years and I still learn stuff here. You do have regular blood work done because of the Imuran right? Pred helps but it is a nasty long term drug, best to avoid if you can. Glad you found us, and so nice to have met you! :bigwave:

 

[DustyKat]

Hi Stacey.

I'm so sorry to hear that things have gone downhill for again...boo!

I wonder why that didn't put you on a maintenance med last time?
I hope the Pred does the trick again this time and the Imuran picks up where it leaves off. As Pen said, be sure they are doing weekly bloods, for now anyway, and keep up a regime as time moves on. You should eventually pan out to 2nd or 3rd monthly. It does take about 3 months for the Imuran to become fully therapeutic. Both of my kids have had surgery that has put them into remission but Imuran has worked well for both them with no side effects.

Sending loads of luck your way that it will be the magic drug for you too!...:goodluck:

Dusty. :heart:

 

[Staceyscarlete]

Actually I haven't done any blood work and he hasnt even mentioned any but I have read on here a few times that it should be done and so I had planned to ask about it when he finally calls. He had suggested putting me on Salofalk but he didn't feel it was going to help. He hoped that I would just stay in remission but my body had other plans and this time he thought it would be more beneficial and hopefully extend my remission. All I know is I feel so sick tonight. Im so naseous. I shouldnt eat but when I start I'm so hungry that I do. It's hard to say no to food especially those you love when your always fasting. I don't eat very much though, I eat one meal a day and snack in between bc I'm simply to full even though my meals are often only a few bites. I don't want to increase my own pred but tomorrow will make 7 days since ive had a bm and I'm starting to get nervous to leave the house.

 

[DustyKat]

Don't wait for them to call you hun, ring them and get the bloods done.

I'm a little concerned that you haven't had a BM for 7 days and this may well be contributing to you feeling nauseous. Do you have pain as well? If so and it escalates and/or you start vomiting please get to the ER as you may be obstructed.

Dusty. xxx

 

[Staceyscarlete]

They wont let me request my own bloods. Here in Canada a doctor has to give you a form and then you can go to a lab. I am going to see my GP on Wednesday so if I don't speak to my gastro by then I'll have her do them. I don't feel pain like I have in the past. More like discomfort. I feel pressure on my left kidney and I can't sleep unless it's on my right side bc it feels uncomfortable otherwise. I also have some hot spots or places where I just feel lots of heat radiating from.