- Joined
- Sep 1, 2013
- Messages
- 12
I first got diagnosed with Crohn’s in about 2004. I had battled bad cramping and varying degrees of loose stools my whole life. Eventually, I started seeing blood. By the time I finally got my tests done, I was having twenty or more urges to use bathroom with blood coming out like crazy. I was put on steroids orally, Asacol, and also was given es suppositories and foam stuff, and enema s. I was so tired all the time and felt like I was in a dog. Eventually the pulls seemed to help. I had taken four months off from work and slept almost that whole time. I went back to work, and one day things seemed to be H adhering worse so I called the GI, and there was just a message adding be was permanently gone on disability. Then before I had a chance to talk to my HP, she went on to further studies leaving me without a doctor. I found another GP, and told him I had a Crohn’s diagnosis. I think he continued to prescribe me Asacol, but my symptoms were gone, and I was left with severe aching joint pain. I also suddenly had issues with incontinence, and when I put a tampon in, it would fill with urine. Doctor thought I just needed to tighten my muscles and have me exercises. Neither of us connected that these issues are Crohn’s related. I continued being exhausted, and began missing a lot of work. I almost got fired. My test results would usually come back with the blood counts off, but he would day "you must be getting over an infection". I thought maybe I didn't have Crohn’s but had lupus or RA as I also had frequent fever and chills.
This continued for years with bladder problems getting worse. For a while I could not eat much at all. Constantly throwing up. Lost 80 pounds but I was obese so no doctor took it serious. Saw a different GI. Diagnosed with GERD. Said no Crohn’s. Refers me back to GP on meds.
Suddenly I started bleeding really bad and having horrific cramping in uterus. It ended up that I had massive infection and now my gynecologist thinks that it s because of fistulas and that I possibly have a fistula and absess. He is booking more tests and getting me a GI this has been terrifying. I was so confused and in a fog. I suspect I've been infected off and on for years. I didn't know much about Crohn’s and didn't understand what it was. It's very scary to read the things that I am. The constant fatigue and anger I have felt at myself, the way I've pushed myself in my life, the way I've kept functioning and hiding it i and smiling because I don't know what to do. It's been a very lonely road.
This continued for years with bladder problems getting worse. For a while I could not eat much at all. Constantly throwing up. Lost 80 pounds but I was obese so no doctor took it serious. Saw a different GI. Diagnosed with GERD. Said no Crohn’s. Refers me back to GP on meds.
Suddenly I started bleeding really bad and having horrific cramping in uterus. It ended up that I had massive infection and now my gynecologist thinks that it s because of fistulas and that I possibly have a fistula and absess. He is booking more tests and getting me a GI this has been terrifying. I was so confused and in a fog. I suspect I've been infected off and on for years. I didn't know much about Crohn’s and didn't understand what it was. It's very scary to read the things that I am. The constant fatigue and anger I have felt at myself, the way I've pushed myself in my life, the way I've kept functioning and hiding it i and smiling because I don't know what to do. It's been a very lonely road.
I'm so sorry that you have had these ongoing problems. How frustrating and worrying it must have been for you. Many of us here can identify with the loneliness and fears that you describe.
