Hi all - My story so far

[sam37]

Hi everyone - I am a 37yr old mom of two who has had CD f0r 12 years now - apart from one bad spell when I was first diagnosed I have been pretty lucky with this disease. Ive been through the meds and settled on Azathioprine and diet control and apart from a few blips was doing ok. However, it seems my luck is running thin and this is why i'm after some like minded people to share with. Having had an acute flare for the last 12 weeks, in quite some pain I was finally admitted to hospital and spent a lovely five days in their company. I had a CT scan which confirmed narrowing of areas in both my small and large bowel and am now on the no food, modulan diet for the next six weeks to see if recovery of my bowel will be enough to allow me to eat again!!!! A lot to take in and as my mind is completely away with the fairies due to the lack of nutrients I'm feeling kind of floaty!!!! Got to wait for an appt for MRI scan, a follow up dietician appt and Gastro appt to come thru and try to work out how to afford to be ill!!! Am currently reducing steroids, still on Aza, Paracetomal, and Lansoprazole. They are talking about Remicade(?) so got to look that up. Lets wait and see. xxxx

 

[dreamintwilight]

Hi Sam

Thanks for sharing your story with us! It's great to hear you've had so many years without any major flare-ups. Sounds like your doctors are doing a good job of making sure things are okay with you and are planning some good imaging tests to know what's going on inside before they decide what the next step in treatment should be.

Remicade has been a miracle drug for many on the forum, so I hope if you have to go that route, it will work with as much success for you. If you haven't found it already, there is a sub-forum in the Treatment forum called the Remicade Club. You can read through everyone experiences in there as well as advice and tips. There are also other sub-forums like the Imuran Club and Humira Club (which is similar to Remicde). you can also look through the Treatment forum on its own to learn about other treatment options too.

It's a lot of info, but it's good that you want to be prepared. Are you currently in the hospital or did they allow you to go home? Take care of yourself and keep us updated!

 

[mikeyarmo]

Welcome sam37!

Marisa above pointed you in a good direction to get some more helpful information that is available on the forum. I am sorry that you have had some issues as of late but hopefully between the dietician, the gastro and some luck things will work themselves out.

 

[Jennifer]

Welcome to the forum! It sounds like you're in goods hands. Keep us updated!

 

[ameslouise]

HI Sam and welcome!

Sorry you are feeling poorly after so many good years of things under control. Hope the modulen routine does the trick and you can get back on foods again soon!

As Marisa pointed out, we have threads here about every treatment option. And people with experience and knowledge they are glad to share!

Good luck finding the next treatment that will work for you!

 

[xJillx]

Hi Sam and welcome! I am sorry to hear you have been having such a difficult time lately. But it sounds like you have a good plan of attack going. I sure hope it does the trick and you start feeling better and can enjoy your favorite foods again real soon!

Keep us posted and let us know how your upcoming MRI goes.

 

[sam37]

Hey - I got out of the house today lol !!! Only to take my kids to school but it was nice to feel the sunshine on my face !! Got an appt to see my gastro on 8th July so things are moving. Thanks for all your replies. Speak to you soon xx

 

[Jer's Girl]

Welcome to the forum Sam!

 

[Astra]

Welcome to the forum Sam!
hope your appt goes well in July, let us know how you get on
lotsa luv
Joan xxx