Newbee

[sinead73]

Hi I'm new to this forum :smile: I was diagnoised with Crohns disease when I was 17 and am now 34. I have two beautiful children, a great and understanding husband.

For the past three years my crohns has been very active leading to a resection and all medications failing to be of any benefit.

Would love to hear from other persons in the same situation and what their care plan is???

 

[archie]

Hi sinead and glad you joined the forum it's a great place to get advice. I was only diagnosed last year after suffering a major flare which lead to an abscess and perforated bowel. I had 1 ft of restricted bowel which failed to heal with meds so ended up having a resection in Nov. Since them i've been really good I have to occasional bad day/days when the pain flares and a few symptoms return but i'm nothing like as ill as I was last year so I don't worry to much. I'm currently off all meds and just awaiting blood test results to see if I need vit B12 inj's. I don't have a care plan and my GI discharged me after the surgery, but my surgeon is still keeping an eye on me and i'm due to see him again in a couple of weeks... I try to manage it myself by avoiding the triggers but as i'm new to all of this Its trial and error and advice from the forum that keeps me right. Hope you get some answers here

 

[xJillx]

Hi sinead and welcome! I am sorry to hear you have been having a tough few years. I know a resection sounds scary, but for many, it has brought great relief, just like archie. I sure hope the procedure will do the same for you.

Check out the surgery sub-forum for lots of good info:
http://www.crohnsforum.com/forumdisplay.php?f=71

 

[sinead73]

Any advice

Hi there In 2006 I had 18 months of infliximab which broke down- I had several side effects. Thereafter 2007 I was put on Humira and reacted to that almost immediately. In Oct 2008 I had a resection and I have never improved since. My current meds are: Azathiorpine 200mgs, 4gs Pentasa, B12 monthly injections, folic acid, calcium & Vit D tabs, Loperamide, Tramadol, Buscopan, Shandishakes (food supplements). My disease is very active and has not been controlled for at least the last three years. Since last October, I have had weekly methotrexate injections for 20 weeks. Had a CT Scan and Colonoscopy to find the disease had got worse. This was stopped. Then commenced me on infliximab again (against my will -second time around) and after the third infusion, my pain is more frequent and more severe. Now I have been told that I will probably have yet another resection in the next few months.It seems that the infliximab has narrowed my bowel even more (worsening my stricture). I really don't want more surgery as it didn't work the first time!!! Any new meds out there that I don't know about?? Any advice as I am very tried of arguing with my gastro !!!!!

 

[Catherina]

I was suffering for approx. 5 years after resection with all the stuff you used as well except biologicals. I turbo tour with prednisolone did give me a good break. unfortunately two more autoimmunes developed arthritis and cdip and I started Immunoglobine, now that it started not to be effective anymore (the IVIG) and the physicians are trying to find meds that cover all three auto-immunes I am back again to prednisolone