12th December 2006
I also have Crohns. I was diagnosed at 28 and I am now 40.
I have never had the surgery, as I've never been convinced that the problems and complications most people have after surgery are better than just dealing with the Crohns. I have been seriously hospitalized twice with this disease. The first time they wanted to cut, and I said NO. The doctor said we could wait a few days to see if the meds would help, but after that I may have no choice. Luckily, the meds did work. I also had to have an abscess removed once from MY *** once, and I can tell you now that is NO FUN.
Dealing with Crohn's is very difficult, but after 10 years with the disease, you kind of get used to it. After a while, a certain level of pain and discomfort becomes "normal". If you decide against the surgery, like I have, you just kind of accept that this is life and you work it in to your life as much as you can. As a lawyer, I left my firm and started a solo practice. I did this so I could manage my own schedule without feeling guilty for taking a few sick days here and there. I know where all the bathrooms are in the local stores, and I know where all the rest stops are on I-94. I've learned to cope. But it often means making major changes in your life.
As far as meds, I've tried them all, and I mean all. I'm sorry to say that for me, prednisone is the only drug that provides any relief to the Crohns, although in larger doses it presents LOTS of its own problems. After years of taking all sort of drugs w/o relief, I've now limited my daily drug intake to 5 mg of prednisone, 1 trazadone (sleeping is a ***** with Crohns), 1 amitriptyline, 1 calcium pill (prednisone prevents calcium absorbtion), and 1 folic acid. I've been on these dosages for the last two years, and find it just as effective as all the other crap I've been on. No amount of prednisone is "safe" over a long period of time, but 5 mg isn't much more than your body makes naturally anyway, so I consider it an acceptable risk.
As far as food is concerned, I've just about given up trying to find out what causes problems and what doesn't. I suggest you DON'T read the books about it. I've read books all contradicting what the other says is acceptable.
In the end, all I've learned is that eating large amounts of food at one time is far more uncomfortable than eating a little bit of the "wrong" thing. Frankly, I don't think any food makes the disease worse, it just may exacerbate the diarrea during a flare. Nevertheless, I have found that extremely fatty foods are always problematic, as can be caffiene. Regrettably, beer IS a very bad food for me. Anything that causes gas can make a Crohns gut hurt all the more.
Also, do not confuse Crohns with IBD. People that have IBD may have it for any number of reasons, including poor mental health. I can't tell you how frustrating it was when I was first diagnosed to always have people telling me I need to relax, try meditation, get a less stressful job. BAH! Crohn's does not work that way. I could be on a tropical island with 10 beautiful naked natives waving palm fronds at me and I'd still have to run to the tiki-lieu at the drop of a hat. Crohn's is an immune response to an unknown antigen, it is NOT caused by stress or otherwise poor mental or physical health. IBD can be caused by those things, so naturally eating better will make you feel better, and voila, no IBD. Crohn's don't work that way.
One more thing. I strongly urge all Crohn's people to exercise as mush as possible. This is for two reasons: 1)For some reason, I NEVER have urgency when I'm playing basketball or tennis. I definitely think it helps reduce the symptoms; and 2) Crohn's will land you in the hospital every now and then, and being in good physical shape may be the difference between how fast you recover and whether you wind up with a bag strapped to your side. Staying thin also opens up the door for laproscopic surgery, if necessary, which is far less invasive than traditional surgery.
Finally, let me say this. In my book, anyone who is willing to be in a serious relationship with a Crohnnie is a marverous example of a truly good human. Let me tell you, we can suck to live with, especially if on higher doses of prednisone. But I can honestly say that my disease has made me appreciate my wife and kids all the more. It seems weird to say that I'm "proud" to be a Crohnnie, but man I've overcome a lot and I'm still fighting the good fight. With the right support and attitude, so will your GF. Peace.
I have never had the surgery, as I've never been convinced that the problems and complications most people have after surgery are better than just dealing with the Crohns. I have been seriously hospitalized twice with this disease. The first time they wanted to cut, and I said NO. The doctor said we could wait a few days to see if the meds would help, but after that I may have no choice. Luckily, the meds did work. I also had to have an abscess removed once from MY *** once, and I can tell you now that is NO FUN.
Dealing with Crohn's is very difficult, but after 10 years with the disease, you kind of get used to it. After a while, a certain level of pain and discomfort becomes "normal". If you decide against the surgery, like I have, you just kind of accept that this is life and you work it in to your life as much as you can. As a lawyer, I left my firm and started a solo practice. I did this so I could manage my own schedule without feeling guilty for taking a few sick days here and there. I know where all the bathrooms are in the local stores, and I know where all the rest stops are on I-94. I've learned to cope. But it often means making major changes in your life.
As far as meds, I've tried them all, and I mean all. I'm sorry to say that for me, prednisone is the only drug that provides any relief to the Crohns, although in larger doses it presents LOTS of its own problems. After years of taking all sort of drugs w/o relief, I've now limited my daily drug intake to 5 mg of prednisone, 1 trazadone (sleeping is a ***** with Crohns), 1 amitriptyline, 1 calcium pill (prednisone prevents calcium absorbtion), and 1 folic acid. I've been on these dosages for the last two years, and find it just as effective as all the other crap I've been on. No amount of prednisone is "safe" over a long period of time, but 5 mg isn't much more than your body makes naturally anyway, so I consider it an acceptable risk.
As far as food is concerned, I've just about given up trying to find out what causes problems and what doesn't. I suggest you DON'T read the books about it. I've read books all contradicting what the other says is acceptable.
In the end, all I've learned is that eating large amounts of food at one time is far more uncomfortable than eating a little bit of the "wrong" thing. Frankly, I don't think any food makes the disease worse, it just may exacerbate the diarrea during a flare. Nevertheless, I have found that extremely fatty foods are always problematic, as can be caffiene. Regrettably, beer IS a very bad food for me. Anything that causes gas can make a Crohns gut hurt all the more.
Also, do not confuse Crohns with IBD. People that have IBD may have it for any number of reasons, including poor mental health. I can't tell you how frustrating it was when I was first diagnosed to always have people telling me I need to relax, try meditation, get a less stressful job. BAH! Crohn's does not work that way. I could be on a tropical island with 10 beautiful naked natives waving palm fronds at me and I'd still have to run to the tiki-lieu at the drop of a hat. Crohn's is an immune response to an unknown antigen, it is NOT caused by stress or otherwise poor mental or physical health. IBD can be caused by those things, so naturally eating better will make you feel better, and voila, no IBD. Crohn's don't work that way.
One more thing. I strongly urge all Crohn's people to exercise as mush as possible. This is for two reasons: 1)For some reason, I NEVER have urgency when I'm playing basketball or tennis. I definitely think it helps reduce the symptoms; and 2) Crohn's will land you in the hospital every now and then, and being in good physical shape may be the difference between how fast you recover and whether you wind up with a bag strapped to your side. Staying thin also opens up the door for laproscopic surgery, if necessary, which is far less invasive than traditional surgery.
Finally, let me say this. In my book, anyone who is willing to be in a serious relationship with a Crohnnie is a marverous example of a truly good human. Let me tell you, we can suck to live with, especially if on higher doses of prednisone. But I can honestly say that my disease has made me appreciate my wife and kids all the more. It seems weird to say that I'm "proud" to be a Crohnnie, but man I've overcome a lot and I'm still fighting the good fight. With the right support and attitude, so will your GF. Peace.