New member with Crohns

Hi guys I'm a 35 year old guy from the UK. I was diagnosed with Crohns Disease in my small bowel around 13 years ago after suffering chronic pain in my bowels and joints. I have suffered over the years and have had a good concoction of drugs along the way too!
I suffer too with my joints and this runs hand in hand with my crohns. I've been told it's reactive arthritis which is caused by the Crohn's disease. In the past my knees have swollen to the size of small babies heads and I continue to this day to suffer with them.
Drug wise I started like many taking pentasa many years ago along with azathioprine, this helped for a number of years before this stopped working. I was then put onto Humira which worked really well for around 3 years until my body decided it would reject it, at a loss they tried me on Infliximab which I currently have infused into me but this also is now not working.
I've just been told I now need surgery to remove part of my small bowel and my colon, I guess this was always coming but just a shock to hear it.
I've read a lot of posts on here from people who have had the surgery and the recovery time seems to vary?
My only worry is work as I don't get any sick pay so this worries me, but I guess you find a way of coping.

As you can see I'm new to this forum and have never really done any forums before but this one seemed interesting to share my experiences with other Crohn's sufferers.

Hi mark, I'm fairly new to this forum too and have found it to be a real help. Just knowing there are other people in the same boat helps a lot. I had suffered for many years without knowing I had crohns. Had emergency surgery last year and now have an ileostomy. Surgery scared the b'jesus out of me and at times I thought my life was pretty much over. It took me 3 months to haul myself back to work. I am self employed so also didn't get sick pay. Havin read this forum, recovery seems to differ in a lot of people. The bottom line is if you need surgery then there is no point putting it off. I feel a hundred times better than I did this time last year, I am still recovering in some ways and have days when I hate what this disease has done to me. We all find ways to cope so my advice is not to worry about the finances and the time off, concentrate on getting better. You can get advice re benefits from the citizens advice. I signed up for incapacity and job seekers. It wasn't alot but it helped. Housing benefit I believe is also available if you tick the boxes! Either way, if its three weeks or three months off, you have to be better off physically. Good luck and keep us posted

Hi
Thanks for that it's nice to know your not alone with this. Firstly I'm really pleased your feeling much better it means it was all worthwhile I guess, I'm focusing on feeling better too now. I made a promise when I was diagnosed that it would never rule me I would rule it!!
Your right I know the finances will sort themselves out and thanks for the citizens advice link much appreciated. I hope you continue to feel well, will keep in touch

Hi Mark & welcome to the forum. You've got a lot going on so I'm glad you decided to join us. No one here has all the answers, but I have found talking to people here who live with Crohns or have a loved one with this disease and weighing their advice against what a GIs advice has been so very helpful in deciding what step to take next when the current treatment is no longer working.

I have found taking the right supplements is as equally important as taking meds. Are you taking any probiotics or vitamin supplements now?

You are absolutely right.... Crohns will never, ever rule any of us!!!

Hi Mark,
Welcome glad you found us, my daughter had a similar sounding surgery three years ago. It went smoothly for her. One thing I think that really helped if it is available where you are is they gave her an epidural for the surgery and kept it in for four days after so she felt little pain those first four days. I think it really helped her recovery. I highly recommend it if it is available. Good luck! Keep us posted how it goes.