My Story

[Lindyloo]

I was first diagnosed with Crohns of the Terminal Ilieum in 2007 when I lived in Spain, after losig 3 stone in 3 months. I was put onto a drug called Claversal, which didnt help at all. I had a further Colonoscopy in 2008, where I was told that this had worsened since the last test, they had difficulty in getting into the terminal ilieum. I waited 13 months and was never called back to see the specialist after having the test. I have since moved back to the UK and have recently had a further Colonoscopy, whereby the could not get into the terminal ilieum, also a CT scan which showed abnormal findings. I have since seen the specialist and she has told me that they are putting through an emergency Barium follow through, (which I had yesterday), 1 week after seeing the specialist, as she wanted to see if the terminal ilieum opening had shrunk due to the length of time I have had this disease and not been treated for it. She has told me that if this shows up smaller than should be then this would be removed as no amount of medication would help. However, if this is at a size that can be treated with medication then I will start on Azorthiaprine. So fingers crossed that I hear something pretty soon. Has anyone had any of the above, i.e part of the ilieum removed, or on the drug Azorthiaprine? I would like to know the effects of both of these treatments.

 

[Dexky]

Hi Lindy, I'm curious as to what happened in the 13 month interval. I'd think that would seem a lifetime suffering with a severe stricture. Hopefully, if you could function during that time, it's a sign that it can be helped with meds and you won't need surgery. Good luck and let us know.

 

[Lindyloo]

Hi Dexy, the 13 months that I was just left was a nightmare, I found that whatever I ate just did not agree, this was part of the reason for leaving my job in Spain and coming back to the UK, I felt as though as I was English, put her to the back of the queue, as did alot of English who lived there. I have only been back 9 months and feel as though I have acheived so much more being back here, I am only on steroids at the moment, I have had the blood tests done, to see if I am able to take the azorthiaprine, so its just a matter of time to find out which way I am to go. I am lucky that my family are so understanding of the disease. Will certainly post a soon as I find out the outcome.

 

[Crohn's 35]

:bigwave:Hi Lindyloo welcome! So sorry you are not getting the results you need quicker. I fully understand being dx for 18 years many times the Gi's cannot get past the Ileum, sometimes it just kinks and or there is narrowing. If that is the case you may have to avoid chewy foods, or raw veggies, can cause a blockage and pain. After many meds and too many hospital visits I had a Laproscopic resection of the Ileum, it bought me 7 years of no pain.
Could be for you, but I everyone is different and some people do great with meds. Mine was too far gone. I have bad reactions to immunosuppressants so I can't help you there, but has worked for many. Prednisone works great but it just masks the pain til something else kicks in to help longer term and it has many nasty side effects. Glad you are here, keep us posted!

 

[MapleLeafGirl]

Mine is at the terminal ileum as well and during my last colonoscopy they could not get through. I am currently on Aza and while I feel much better than I did, I am not sure it is totally doing the trick. My inflammation markers are still high and I am having lots of mucus and increased frequency. I have not really noticed any side effects from the Aza apart from some fatigue and nausea at the beginning. I am seeing my doctor next week to determine if we just continue or if I have surgery to have that part cut out.

 

[Astra]

Hi Lindyloo
and welcome fellow Brit

glad you're home! Our NHS is second to none, and hopefully someone will sort you out!
I have it in the terminal ilium too, and was started on Aza back in 2005 when I got dx, and within months I was allergic to it, urticaria (hives) doc said it was toxic to my system, but that was just me, it might work for you, everyone is so different.
glad you found us, lots of support here for you, and friends
lotsa luv
Joan xxx

 

[Lindyloo]

Thank you all so much for your feedback, its amazing how talking to other people help.

 

[Silvermoon]

FYI Lindy...azathioprine is also known as Imuran.... you may find some other helpful threads in the forums that talk about "Imuran"

 

[Sue-2009]

Good luck Lindyloo! S