Please help me with some advise.

[SickNimmons]

Hello everyone. My name is Nick Simmons and have Crohns. I was diagnosed in 2005 at the age of 15. Ever since then my life has been crazy with health issues. In 2005 I spend a total of 6 month in the hospital due to not being about to maintain my weight and they couldn't stop the bowel movements. I lost 57lb in a matter of 2 weeks due to not being able to keep food in me. We had no idea what was going or what to do about it. After I was diagnosed the doctors put me on 27 pills a day to try to get my Crohns under control. Then next year in 2006 I was back in the hospital for another 2 months with the same symptoms. The doctors discussed doing surgery to help, but being 16 I turned it down. I got more and more sick through out that year. I ended up seeing a doctor at the Medical University Of Charleston who only had 5 patients total and I was one of them. He put me on remacaid, and 6MP as well. In 2008 through 2012 it was the something over and over again. In and out of the hospital and tons of more meds. In 2012 I woke up at 2am thinking I was having a heart attack. My chest hurt to move or to breath. I was rushed to the hospital by Ambulance with people thinking I was dying. Spent 2 weeks in the hospital due to Pericarditis caused by my Crohns medication. My doctors at this point had no clue what to do with me. I was taken off all my medication and I was so sick. I was in the hospital another 2 months trying not to get to depressed. In December 2013 I had emergency surgery to remove my whole large intestine. That seemed to work for the first 3 months then the pain and the bowel movements came back. In the last few months its been a rough journey dealing with how to cope with the whole "new" body of mine. If yall had one form of advice to give me what would it be????

 

[DJW]

Hi Nick and welcome.

You have really gone through it with this diseases. Sending you my support.

 

[valleysangel92]

Hello and welcome to the forum.

I'm so sorry you've had to deal with all of this, you've certainly had a rough ride and more than your fair share of issues.

What is your current treatment plan? I don't really know what to suggest for you other than maybe a different biologic, you mention remicade but have you tried humira or would this not be an option with your history? If that's the case, has the newer biologic entyvio (?sp) been discussed with you?

If you have a look at my signature, there is a link to a post about some trials taking place by Qu Biologics for a low side effect medication which you may be eligible for if nothing else is available.

I'm sorry I can't be of more help, I'm hoping someone with more knowledge than me will be along soon.

Although we don't always have the answers we will always do our best to support everyone so please feel free to post and vent if you need to, we all understand what this disease can do.

 

[SarahBear]

Welcome to the forum, Nick!

I'm sorry to hear what you've gone through. It sounds like it's been quite a journey for you.

Have you seen the Surgery section of the forum? It can be found here. You may also want to check out the Stoma subforum, which you can find here.

I hope things get better for you soon!