My story

[Chris07]

Hello everyone,

I was diagnosed with Crohns 13 years (in the illeum) ago after a very rough year when the doctors thought it was just IBS. To cut a long story short i was diagnosed with crohns and spent over a year in a very bad way which included being rushed into hospital 3 times each with a partial blockage. I spent the year on prednisolone which held things at bay on higher doses but as soon as i started to taper it would violently flare again. Due to the lack of treatment at the time my only option was surgery. I had a foot and a half of small intestine/valve and appendix removed. Surgery went well but recovery was very painful. I have since had 12 years of no symptoms and was also on no meds at all. In all honestly i kind of lived my life as if i didnt have crohns. Anyway 6 weeks ago things started flaring again, went back to ER to be told the demon was back with 2 small absesses. The inflammation is also pressing on my uretha on my right kidney causing back pressure. I am really struggling to deal with it this time and has put me majorly into a depressive state. It seems alot more scary this time due to new treatment and the risks involved. Upon being admitted i was put on Steroid and antibiotic IV's, my CRP was 125 and after a few days of IV's my CRP was down to 25 so i was released on a tapering prednisolone dosage. All went well until i reduced to 25mg and it all kicked off again and was readmitted. CRP back to 78. Steroids increased to 40mg plus antibiotics to try to reduce absesses. I am now on Infliximab (Remicade) and Azathioprine at 125mg. I was discharged from hospital yesterday with a CRP of 14 and on a tapering prednisolone again along with the Azathioprine. I am absoloutly terrified of the cancer stories and struggle to concentrate on anything else and am currently debating stopping the Aza due to horror stories i have read. The doctors disagree as they say i will probably build up antibodies to the Infliximab. I really dont know what to do for the best.

Thanks

Chris

 

[Astra]

Hiya Chris
and welcome

Sounds like you're at the end of your tether, hopefully by reading our stories will set your mind at rest.
Hope you've had time to read thro our sub forums in the treatment section on Azathioprine (Imuran) and Infliximab (Remicade); lots of success stories in there. Your CRP is lowering which is a good sign that the Pred is working it's magic, and once the Infliximab has kicked in you'll be able to stop the Aza.
We've all had the cancer scare feelings, me included, but I'm sure the docs would have noticed anything sinister by now, try not to fret, we're here for you.
Lotsa luv
Joan xxx

 

[David]

Hi Chris and welcome to the community.

First off, where are the abscesses located? Are they in the area where your resection was or are they perianal?

I ask because if they are near your resection location, then I think throwing the kitchen sink at the disease is a good idea and as such, both Remicade and azathioprine would be for the best. I say this because you really don't want to have anymore small intestine removed if at all possible. In fact, I'd probably ask them their thoughts about putting you on exclusive enteral nutrition as well to add an additional treatment option to help get this under control.

I understand the thought of cancer is really scary and I'd no doubt be terrified, but I think not getting this under control runs higher risks.

If the abscesses are perianal, then my thoughts would be different.

Again, welcome to the community. We're here for you.

 

[Chris07]

Thank you both for your replies.

David the abscesses are in the region of my resection where it has come back. They have said they are only small.

Just feels like there is no light at the end of the tunnel

 

[David]

Get them under control while they're small then. I know it's scary and I can certainly understand the no light at the end of the tunnel feeling. But both Remicade and azathioprine are excellent treatment options for Crohn's disease. Coupled together and managed properly, I bet you're going to be seeing a really bright light here real soon. And seriously, research enteral nutrition and discuss the idea with your doctors if you think you're up for it. Those three together would require you to get some high quality sunglasses because of how bright the light would be.

We're here for you.

 

[Hope345]

Chris 07,

Welcome to this caring, informative and supportive forum. You will find so much great information here. I know I have.
Since you have been symptom free for so long, it is like starting over again. You will be depressed and try to deny it for a while. But like David said, get on it right away and do the best to take control of it. Since you know what it is, and so many others have used methods to help them, you can get those abscesses under control and get yourself right back into remission.
Sending the best to you and keep us informed

 

[afidz]

Chris
Everything that I would of said as already been stated, but I wanted to let you know I was listening. I know how you feel when you say there is no light at the end of the tunnel, but you know there is, you have seen and experienced the light at the end of the tunnel. Stick to your treatment plan, give the meds time to work. You can achieve remission again!