My Crohn's story

Hello! I've read a lot of threads here and it is comforting to find people sharing the same symptoms the same trials, the same social issues. It is very difficult to talk about this disease to my peers and employees. I've been suffering for about 6 years now. I was originally misdiagnosed with UC. However, Remicade worked well, got me solidly in remission. Then I developed a severe reaction to the Remicade. I opted not to go on Humira and remained in remission for about 1.5 yrs. And then I got hit with a really bad flare up - while on summer vacation. I was miserable, and could not get into see GI. Finally got in to GI (on the verge of going to ER)he prescribed 40mg prednisone, then 60mg prednisone and began the authorization for Humira. I started Humira last October. Improvement has been negligible, but not ready to give up. Diagnosis was changed to Crohn's after I developed an abscess and an MRI revealed a fistula. Blood test confirmed Crohn's. I find this disease exhausting for many reasons. I'm always worried about making it to the restroom. I haven't slept more than an hour at a time in months. I often have to brief large numbers of people in large auditoriums from a podium on a stage. I have to manage a large number of people and meet with them regularly. I've had my share of accidents and all very embarrassing. It is so difficult to explain this to people. I don't like to. I try to "tough" it out, but sometimes I just must stay on the couch all day long, and call in sick. I feel my wife is becoming frustrated. I used to very active - ran marathons, always doing DIY projects, always helping around the house. Now, I can do nothing. I start a project, and within minutes have to go... As I said above, it is so comforting to find other people who share their experiences. I know I am not alone.

I am hoping the Humira will eventually have me turn a corner and start improving. I think after 6 months or so, I may have to say "enough", though I have experienced no side effects from the Humira. Gastroenterologist will then try Entivyo,. Don't know much about that.

All I know is no longer can do the things I enjoy - biking, running - I live a totally sedentary life. Vacations are not enjoyable, restaurants are not enjoyable. I cannot enjoy food anymore. Work is challenging, and luckily I have a desk job. Sex is mostly out of the question. Very, very frustrating - though I know there are worse diseases.

I know many of you are on Humira, I'm optimistic that over the couple of months it will really start to make a difference and I can get my life back!

For those of you on Humira, have any of you had a similar experience - negligible improvement until the sixth month mark?

I'm on cimzia which is similar to Humira.. I feel pretty good for the week after wards but am still working up to remission.. I have been on and off of it though due to a cdiff infection.. I'm hoping that going on and off hasn't ruined it for me, but we will see.. Don't be afraid to take immodium to get through work.. I have to.. I'm an xray tech in a small hospital. So basically I do a bit of everything.. I help in the ER a lot too.. Thankfully I think my fight or flight response helps, when my adrenaline gets going, my bowels kinda take a rest. I always keep immodium and a pad in my drawer just in case I'm having a really rough day. I really try not to take immodium often just bc I go from diarrhea to constipation in a matter of a day. I've been pretty sick for a year with all the cdiff and flare ups, I also have a 15 month old son. So it's been tough keeping up. My husband is a trooper tho. I know he's bummed that we can't be out more, but I try to get out as often as I can. Even if just one day a week we go for a walk, it seems to help his psyche with all this.

Have your levels been checked? It might be that your dose or schedule needs to be adjusted. For many people the standard scheduled isn't enough to get the CD under control.

Also there is the possibility of adding another med like methotrexate to help get you into remission. Theses also imuran and 6mp.

I hope you find remission soon.

Thanks on the immodium suggestion. I have been reluctant to try meds that alter my stool constitution.

Most of the time, it is the tenesmus - that feeling that you have to go, but after incredible straining (like your going to pass a trophy size watermelon) you pass very little or nothing. Usually I only pass gas, or rabbit pellets. That straining, though, it wipes me out.

I'll add the immodium to my arsenal, though. Right now I have a supply of flushable wipes, maxi pads (my wife's suggestion), plenty of febreeze, changes of underwear and pants. I keep this in my office, and another "kit" in my car.

For those of you who are wondering, the maxi pads absorb a lot of water, and keep you from soiling your underwear. They are not as expensive and easier to dispose of than Depends.

Clash said:

Have your levels been checked? It might be that your dose or schedule needs to be adjusted. For many people the standard scheduled isn't enough to get the CD under control.

Also there is the possibility of adding another med like methotrexate to help get you into remission. Theses also imuran and 6mp.

I hope you find remission soon.

Click to expand...

Actually yes, I was on 40mg pen, every two weeks, just started every week this week.

I've gone through all the meds. Remicade was the only success story and sometimes prednisone. At 60mg of Prednisone I'd find myself hourly standing in front of the refrigerator eating foods that probably exacerbated my problems.

Hi Colbydog
I was on remicade and imuran. At first remicade really helped when I got the loading doses but as time went on it helped less and less.I changed to humira and imuran but humira didn't work at all.I even changed to weekly doses and was also on prednisone but still ended up with a bowel perforation,resection and ileostomy.So I know everyone is different but would my advice would be not to give humira too long as you might do more damage then good. Stelara and methrotrexate are other options my doctor suggested but thankfully since the ileostomy I am not on any crohns meds just imodium and codeine.

Hi Colbydog
I was on remicade and imuran. At first remicade really helped when I got the loading doses but as time went on it helped less and less.I changed to humira and imuran but humira didn't work at all.I even changed to weekly doses and was also on prednisone but still ended up with a bowel perforation,resection and ileostomy.So I know everyone is different but would my advice would be not to give humira too long as you might do more damage then good. Stelara and methrotrexate are other options my doctor suggested but thankfully since the ileostomy I am not on any crohns meds just imodium and codeine.