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22wendylou
Guest
Hi, I am a new member here. I've been given a "working" diagnosis of Crohns over the years, but have yet to have any test results come back positive for it....However, my docs have seen swelling in the ileum, upon various testing, consistent with crohns.
Typically, I go years feeling completely normal. My last bout, prior to my most recent (in November) was 4 years ago.... I'm curious if this is normal timing for a patient with Crohns. From what I've heard/read, it seems that most people deal with flare-ups on/off more often than that. In fact, WAY more often than that. Which is why I am hesitant to go on long-term medication for something that I may not even have.
Some of my symptoms are the same as someone with Crohns when I'm having them, bloating and tenderness in the abdomen. But, I also, completely lose my appetite. I cannot eat/drink anything for days on end. So, I'm not going to the toilet at all, either. Which is typically the most predominant symptom as far as I'm aware (constant bm's). When I'm not ill, my bm's are pretty much normal for years at a time....Which is also atypical for Crohns, isn't it? Prior to the bloating and tenderness (and throughout the flare-up) I experience excrutiating pain in my upper abdomen. (Just below the sternum). My docs keep telling me I'm feeling the pain there, but it's probably stemming from the ileum...???
In years past, I've never needed any meds to get better...But the last two times, I've been ill, I did take prednisone to get better because the flare-ups have lasted longer and longer....My gi doc wants me to begin taking Imuran once my prednisone gets tapered to 10mg's, which is right about now, to keep me in remission. I've been weaning of from the 40mgs that I began taking in November due to this most recent flare-up.
My question is, aren't there other, less potent meds I could try first? I'm concerned about side effects, etc....Especially given the rarity of my flare-ups....I understand the need to stay in remission, because I DO NOT want to keep going on/off prednisone. Which, being that my attacks are not getting better on their own anymore, seems to be what's necessary to make the symptoms go away.
I should give a little history/background which may/may not affect your thoughts.. For those of you who are still reading! I know I'm longwinded!
I'm 36 years old and have been experiencing the above described symptoms since I've been 18, very sporadically. During the attack I had prior to this last one, a doc put me on remicade and prednisone to get me well. This doc was a friend of the family who had never seen me previously. I was unable to see my old gi doc at this time because he longer accepted my insurance...The new doc had no previous history on me except for what he saw when he did an emergency colonoscopy. He ordered one instantly when he saw how much pain I was in a how lethargic I was when he saw me in his office. ....I hadn't eaten for about 14 days. He did my first infusion while I was still under sedation from the colonoscopy...
I fear he may have jumped the gun and given me this "cadillac" of drugs not knowing that I've never really taken anything previous to that....) Imagine my shock when he told me I would have to continue getting infusions, when I woke up to after the procedure...
A different gi doc who saw me during rounds a couple days later while I was still in the hospital (they admitted me, until my pains went away and I was able to eat on my own) actually told me he would NOT having given me the remicade and he felt it was the prednisone (they were also giving me) that was working to make me well again....
I did manage to get off the remicade eventually after agreeing to go on Imuran instead. I eventually (after taking it for about 3 months) quit taking the imuran as well...As I say, I just couldn't justify the side effects and all the necessary blood testing, etc that taking the imuran wrought, for fending off flare-ups when I just don't get them very often....
However, being that I am much more ill, when I do have these attacks than I used to be, I am willing to take SOMETHING to possibly stave off another attack and to avoid going back on steroids in case there would be another attack. But, I'm just concerned about Imuran....This is the same doc that put me on the remicade/imuran previously....
Sorry to be so lengthy! Maybe I should've made this two threads..! I appreciate any advice/comments I can get.
~Wendy
Typically, I go years feeling completely normal. My last bout, prior to my most recent (in November) was 4 years ago.... I'm curious if this is normal timing for a patient with Crohns. From what I've heard/read, it seems that most people deal with flare-ups on/off more often than that. In fact, WAY more often than that. Which is why I am hesitant to go on long-term medication for something that I may not even have.
Some of my symptoms are the same as someone with Crohns when I'm having them, bloating and tenderness in the abdomen. But, I also, completely lose my appetite. I cannot eat/drink anything for days on end. So, I'm not going to the toilet at all, either. Which is typically the most predominant symptom as far as I'm aware (constant bm's). When I'm not ill, my bm's are pretty much normal for years at a time....Which is also atypical for Crohns, isn't it? Prior to the bloating and tenderness (and throughout the flare-up) I experience excrutiating pain in my upper abdomen. (Just below the sternum). My docs keep telling me I'm feeling the pain there, but it's probably stemming from the ileum...???
In years past, I've never needed any meds to get better...But the last two times, I've been ill, I did take prednisone to get better because the flare-ups have lasted longer and longer....My gi doc wants me to begin taking Imuran once my prednisone gets tapered to 10mg's, which is right about now, to keep me in remission. I've been weaning of from the 40mgs that I began taking in November due to this most recent flare-up.
My question is, aren't there other, less potent meds I could try first? I'm concerned about side effects, etc....Especially given the rarity of my flare-ups....I understand the need to stay in remission, because I DO NOT want to keep going on/off prednisone. Which, being that my attacks are not getting better on their own anymore, seems to be what's necessary to make the symptoms go away.
I should give a little history/background which may/may not affect your thoughts.. For those of you who are still reading! I know I'm longwinded!
I'm 36 years old and have been experiencing the above described symptoms since I've been 18, very sporadically. During the attack I had prior to this last one, a doc put me on remicade and prednisone to get me well. This doc was a friend of the family who had never seen me previously. I was unable to see my old gi doc at this time because he longer accepted my insurance...The new doc had no previous history on me except for what he saw when he did an emergency colonoscopy. He ordered one instantly when he saw how much pain I was in a how lethargic I was when he saw me in his office. ....I hadn't eaten for about 14 days. He did my first infusion while I was still under sedation from the colonoscopy...
I fear he may have jumped the gun and given me this "cadillac" of drugs not knowing that I've never really taken anything previous to that....) Imagine my shock when he told me I would have to continue getting infusions, when I woke up to after the procedure...
A different gi doc who saw me during rounds a couple days later while I was still in the hospital (they admitted me, until my pains went away and I was able to eat on my own) actually told me he would NOT having given me the remicade and he felt it was the prednisone (they were also giving me) that was working to make me well again....
I did manage to get off the remicade eventually after agreeing to go on Imuran instead. I eventually (after taking it for about 3 months) quit taking the imuran as well...As I say, I just couldn't justify the side effects and all the necessary blood testing, etc that taking the imuran wrought, for fending off flare-ups when I just don't get them very often....
However, being that I am much more ill, when I do have these attacks than I used to be, I am willing to take SOMETHING to possibly stave off another attack and to avoid going back on steroids in case there would be another attack. But, I'm just concerned about Imuran....This is the same doc that put me on the remicade/imuran previously....
Sorry to be so lengthy! Maybe I should've made this two threads..! I appreciate any advice/comments I can get.
~Wendy
