Update on Maddie !

[JodiMaddie]

We went to see Maddie's Ped GI specialist today and things dont look to good ! He said her UC is one of the worst cases , She currently takes Pentasa 4 tabs . We talked today about trying some ANtibiotics for 14 days and Uping her Pentasa to 8 tabs to see if this will help get her out of the flare ! I am hoping and praying this works ! If not it is back on Prednisone , which seems to work well until we taper down to 10 then she flares right back up , he also said we would add Azathioprine (Immunomodulator ) . She will have to have bloodwork every month . Please keep your fingers and toes crossed the antibiotics and uping the Pentasa work , he also mentoined Remecade but said it didnt work to well in UC patients . By the end of the appt he did say last resort was Colectomy ! My heart sank !!!!!

 

[Nancy Lee]

Ah Jodi...I'm sorry things didn't go so well today for you and Maddie.
I am on something similar to Pentasa..upping it could help and the antibiotics.
Also adding Azathioprine would help...I think if it were me I'd be hopping back onto the Prednisone. I was on it in the beginning for over a year and couldn't taper without flaring..finally got off of it by going on Entocort, which is a lighter amount of steriod.
Remicade has done some remarkable things for patients.
It would sound as though the doctor is trying to make you aware that they have many other things they can try if upping the Pentasa doesn't help.

Hang in there...
Comforting hugs to Maddie and you both!

 

[AZMOM]

Hi Jodi - Sorry I am just reading your posts. What a roller coaster...... The Azathioprine will hopefully help keep her in remission so she can stay off steroids. We'll be thinking of you all.......some visits are harder than others, aren't they???

Hugs,

 

[Dexky]

Hey Jodi, maybe if she does have to go back on pred she will be able to come off it completely with the Aza. If it is as severe as the doc has said, I just don't think the Pentasa alone is gonna be enough to maintain remission.

 

[DustyKat]

Oh my, I am hoping right along with you that the increase in meds and antibiotics does the trick! As others have said perhaps a shot back on Pred and the introduction of Imuran will get things under control. Fingers and toes crossed hun that one of the drug combinations works for Maddie. Good luck and keep us posted on how things go......

:goodluck::goodluck::goodluck:

Thinking of you, :hug:
Dusty. xxx

 

[Keona]

I bet your heart sank My fingers and toes are crossed for you that the current meds work
Wendy

 

[JodiMaddie]

Imuran

I am very nervous about putting her on Imuran ! I have been reading and the side effects scare me !

 

[JodiMaddie]

heeeeeeey

 

[DustyKat]

You aren't alone in being freaked out with the side effects of these drugs! :eek2:

Brian'sMom has posted an excellent link about the risks associated with the varying treatments that helps put things into perspective.......

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

I know it's hard and something I struggle with at times. I now have both my children taking Imuran and yes, it scares me but in our case the consequences of untreated Crohns would certainly lead to death. Bear in mind that is my experience and everyone is different! You are dealing with UC so have different things to consider. Ultimately surgery would cure the disease your daughter has but you have to weigh up the risks of medication in order to preserve your daughters bowel for as long as possible.

My daughter has been on Imuran for 5 years now with no obvious side effects. She has bloods done very 3 months, initially much more frequently, and has been in remission for 5 years now. Is it the surgery or the Imuran or something else entirely different that has kept her there? I don't know but I'm not going to change anything to find out! :lol:

Dusty. :hug:

 

[JodiMaddie]

Your right Dusty ! I have to put her on what gets her better ! We are def not ready for her to lose her bowel , that isnt even an option right now ! SOrry to hear both of your girls have Crohn's ! Life is so hard sometimes !!!