Hello newbie to Forums, 15+ year Crohnie

Hello I just found this forum through a post on Facebook. Im a 30 year old male I was diagnosed with Crohns disease in 97 I was 14. Im currently on 100mg Mercaptopurine daily and 40mg of Humira weekly. I have constant diarrhea, fatigue, pain, and a rectal fistula. Ive had numerous rectal surgerys to drain abscesses. I was on Remicade for 10 years and it was awesome, healed the fistulas, I felt normal again, and held a full time job.

About 3 years ago the Remicade quit working, I was switched over to Humira. Have had a pretty bad flare since then. I lost my long term job (9 years ) and another job in 2011. I had surgery for a rectal abscess December 2011 and couldnt return to work. I exhausted mt FMLA at my long term job. Humira dosent seem to work as well. March of 2012 I had a intestinal tear and choose to have a temporary Colostomy at that time. Still had alot of pain and fatigue but the rectal area fistula healed. Talked with my GI and we decided to reverse Colostomy in DEcember 2012. During surgery they had to remove 6 inches of my rectum due to scar tissue buildup. Almost immediatly after surgery the rectal fistulas returned. Surgeon isnt sure how to proceed. I see my GI Dr again in July. Last year I asked to try a new medicine instead of the 6mp and GI said no. I have been on the 6mp for over 12 years and i dont think it works anymore.

I started the process for Social Security Disability in January 2012. I had to get a lawyer after being denied twice. I had my hearing with the judge last week. The vocational expert testified I am unable to work, so I won my lawyer said. Should take about 30 days to get the official notice. Hooray for some good news. I wanna go back to school part time, find a job to work from home.

Currently unable to sit for periods of time due to pain from fistula. Any advice for me when I see my Dr in July ? Im thinking I might just have to have a permanent Colostomy, as the meds dont seem to work for my fistulas. Not sure why they have never tried the setons or surgery on fistulas other than abscess drainage ? If you read this whole book I just wrote THANK YOU. This disease really sucks but I try to stay positive. Im currently on Hydrocodone for the pain but ive been considering marijuana even though im not in a medical mj state.

Just wanted to say hi and welcome! :welcome:

Looks like you've got a lot of experience since 1997. You've come to a great place for information and support! I would encourage you to look around here. We have a support group for those on Humira. We also, have a chat room where lots of us meet just to get to know each other and support one another. Let me know if you have any questions & hope to see you around!

I have been turned down but also afrais afraid for 15 years to reverse my colostomy because those darn fistulas are even worse to deal with. I don't get on here nearly enough but today I did and the first thing I read is that people are healing their fistulas left and right by some kind of wheatgrass cream. I gave up on my doctors (not recommended) and their negative behaviour or giving me the latest drug, which is probably doing damage to my liver. I can't see my fistula on my own but apparently (gyn) doctor can see it. I'd like to heal it up anyway whether I am using it or not. I don't know much more than that about the wheatgrass cream it but it has gotten me excited enough to start looking for a new doctor....and I will be checking the internet for wheatgrass too. Good Luck to you!

Hi and welcome. Sorry things took a downward turn for you. Its a good place here, you'll love it.

Welcome !

Hello and welcome!

I've also had Crohn's for 15+ years (diagnosed when I was 8, I'll be 26 in August). I'm sorry you've been having such an awful time! This disease really can be the worst sometimes And it's so hard to find people who really understand what you're going through.

Has your doctor mentioned Tysabri? This drug isn't talked about much in regards to Crohn's. But I, like you, was on Remicade for 10+ years, and Humira after that stopped working (which never really worked for me either). So when I had a flare last summer, my doctor suggested Tysabri. It was like a miracle drug for me, and 4 days after my first infusion I was feeling perfectly healthy again. So I don't know if that's something you could discuss as a next option with your doctor? It's a scary drug because of the PML risk, but my doctor said as long as I test negative for the JC Virus, my chances of getting PML are negligible.

Of course, I don't know how it would work in regards to fistulas/abscesses (as I've thankfully never had those). But it might be worth discussing with your doc?

Hope things start getting better for you soon!

I have looked into Tysabri but the possible side effects freak me out I will not try it. Thanks for all the replies.

So a few updates for me. I had a lower colonoscopy done and Dr said everything looked good he couldnt see my fistula very well. Also did MRI a few weeks ago. Small abscess connected to fistula, gonna try a seton to help with drainage and hopefully lower the pain in my bum. Before the colonoscopy we had discussed switching from Humira to Cimzia but now were not. I dont understand why I still have lots of stomach problems if they cant see any active inflammation. Im on 2 different diarrhea meds, Lomotil 10-12 a day and Questran 1-2 a day. Im always tired whether I do anything or not. Im really praying this Seton works. I wanna go back to school and work part time but I cant do either if my disease dosent improve. Also my bloodwork showed elevated white count I think but that could be from the abscess. Also been having horrible allergy sinus crap lately been a 1,2 punch. Anyone with seton experience how long until relief after surgery 1-2 months ? The treat me like a drug addict and I have to beg for Hydro Codone 3.5 -250 . I have no history of abuse so I dont understand what the deal is. My GI and Surgeon are 300 miles away, the only thing I can do locally is ER and my general Dr which cant do much for me other than pain meds. Just so frustrated cant wait for next years changes so i can go back to my long term GI that is only 90 miles