I was diagnosed in 2006 but I believe I was ill for at least 10 years before that. My yearly blood tests always showed a high platelet count and I had bouts of fatigue and joint pain that my gp attributed to Chronic Fatigue or Fibromyalgia. At some point she said that we should investigate my wonky blood work and I saw a hemotologist, who referred me to a GI doc, and I had my first colonoscopy at the age of 50 and got my Terminal Ileitis diagnosis and was put on Pentasa. My GI symptoms worsened and I was put on Endocort. Things got worse and I got prednisone. The Things Got Worse thing seemed to be my thing.
The Actinel I took to combat the prednisone gave me terrible hip pain and incredible gastric upset that I thought was a heart attack until after I ingested about 5 million Tums and it went away.
Long story short, I ended up on Immuran and things really got worse. I'm not saying that each drug made it worse, just that none of the medicines helped and the side effects were intolerable. I had terrible headaches, hair loss, increased fatigue, and GI issues that made it hard to leave the house. My platelets, CRP, and sed rate were all still wonky. I had no reason to believe the Immuran was helping. After a few years of this I just decided to stop the Immuran and now my doc listened to my complaints and was pissed and said, "Even if you didn't feel better, it was working on the inside."
He sort of wrote me off after that and I felt physically bad enough I didn't care. More stuff happened. I was pretty depressed and constantly exhausted. People I thought were my friends told me Crohn's wasn't really that bad a disease and lots of people brought it upon themselves. I lost more hair, had _issues_ that made life difficult. Had terrible low back an hip and foot pain. I was ready to give up.
I read an article in Reader's digest about how joint pain and depression and hair loss in post-50 y.o. women might indicate low thyroid, and I thought, Huh? Is it possible to have more than one thing go wrong? Not sure why my doctors didn't think of this but they were stuck on their diagnoses and not into ever re-evaluating based on findings. I asked my GP to test for thyroid and she did. Amazingly, I started to feel better after I started Thyroid
My Crohn's was still wild and my fatigue really hard to deal with, but my GI doctor was still mad at me for discontinuing the Immuran and told me so every time I saw him. It was coming up on 6 years of diagnosis and he said that some time in the future we should get a repeat colonoscopy.
I realized it was time to switch doctors. The new doc is more aggressive in treatment but I like his style, like that he listens to my concerns, like that he doubled my Pentasa dose, did repeat labs to see if that was helping and when it wasn't, suggested an initial colonoscopy to be repeated on a regular basis and when the colonoscopy show problems, ordered a CT scan. Based on the CT readings, he's recommend Methotrexate and Remicade.
More long story short, I'm 3 weeks into Methotrexate injections and can't believe how great I feel. I have a noticeable improvement in energy. My GI issues seem improved. I do have headaches but they've gotten better. I felt good enough to ask for a referral to PT to help me work on some of the painful stuff that I thought I just had to live with (turns out that some mechanical stuff can be helped) and I feel strong enough to do more cooking and get back to work. Kind of miraculous. The biggest thing is that I no longer feel like giving up.
Of course, I'm very worried about starting Remicade and wondering if the Methotrexate isn't enough on its own. I don't want to be labeled a troublemaker by this new doc but I do worry and plan on talking to him before starting the Remicade. I will be looking through the forum to see what other folks' experience is here.
Wow. Writing this much makes me realize that Crohn's is a disease you never talk about in polite company. I think any chronic illness just makes listeners clam up and you learn never to mention it.
The Actinel I took to combat the prednisone gave me terrible hip pain and incredible gastric upset that I thought was a heart attack until after I ingested about 5 million Tums and it went away.
Long story short, I ended up on Immuran and things really got worse. I'm not saying that each drug made it worse, just that none of the medicines helped and the side effects were intolerable. I had terrible headaches, hair loss, increased fatigue, and GI issues that made it hard to leave the house. My platelets, CRP, and sed rate were all still wonky. I had no reason to believe the Immuran was helping. After a few years of this I just decided to stop the Immuran and now my doc listened to my complaints and was pissed and said, "Even if you didn't feel better, it was working on the inside."
He sort of wrote me off after that and I felt physically bad enough I didn't care. More stuff happened. I was pretty depressed and constantly exhausted. People I thought were my friends told me Crohn's wasn't really that bad a disease and lots of people brought it upon themselves. I lost more hair, had _issues_ that made life difficult. Had terrible low back an hip and foot pain. I was ready to give up.
I read an article in Reader's digest about how joint pain and depression and hair loss in post-50 y.o. women might indicate low thyroid, and I thought, Huh? Is it possible to have more than one thing go wrong? Not sure why my doctors didn't think of this but they were stuck on their diagnoses and not into ever re-evaluating based on findings. I asked my GP to test for thyroid and she did. Amazingly, I started to feel better after I started Thyroid
My Crohn's was still wild and my fatigue really hard to deal with, but my GI doctor was still mad at me for discontinuing the Immuran and told me so every time I saw him. It was coming up on 6 years of diagnosis and he said that some time in the future we should get a repeat colonoscopy.
I realized it was time to switch doctors. The new doc is more aggressive in treatment but I like his style, like that he listens to my concerns, like that he doubled my Pentasa dose, did repeat labs to see if that was helping and when it wasn't, suggested an initial colonoscopy to be repeated on a regular basis and when the colonoscopy show problems, ordered a CT scan. Based on the CT readings, he's recommend Methotrexate and Remicade.
More long story short, I'm 3 weeks into Methotrexate injections and can't believe how great I feel. I have a noticeable improvement in energy. My GI issues seem improved. I do have headaches but they've gotten better. I felt good enough to ask for a referral to PT to help me work on some of the painful stuff that I thought I just had to live with (turns out that some mechanical stuff can be helped) and I feel strong enough to do more cooking and get back to work. Kind of miraculous. The biggest thing is that I no longer feel like giving up.
Of course, I'm very worried about starting Remicade and wondering if the Methotrexate isn't enough on its own. I don't want to be labeled a troublemaker by this new doc but I do worry and plan on talking to him before starting the Remicade. I will be looking through the forum to see what other folks' experience is here.
Wow. Writing this much makes me realize that Crohn's is a disease you never talk about in polite company. I think any chronic illness just makes listeners clam up and you learn never to mention it.
