Hello everyone. I am 26 years old and have had Crohn's since I was 11.
I used to manage my disease relatively well until early 2008. After ignoring my symptoms and fever for 4 months an abscess formed in my pelvis along with serious intestinal inflammation. I ended up having right hemicolectomy and also part of my terminal ileum removed + beginning part of large intestine. Over 60 cm was given for biopsy, but don't know if that was all that they removed, it might have been even more, from what I see when reading about these procedures online. I got my temporary ileostomy.
During long hospital stay I also had additional fistulas forming requiring few more (less major) surgeries. A year later (2009.) my ileostomy was successfuly reversed and from then on up to today I've been in remission and without any meds.
A year ago I developed a severe iron defficiency anemia and my calprotectin was 300+. I had to take many iron infusions (and even now ferritin is still extremely low). I thought the disease was back despite not having any symptoms. Well, I did colonoscopy (they even managed to enter 20 cms of small inestine), gastroscopy and barrium X-ray 2 weeks ago and they found NO sign of active disease, even biopsy is completely clear. This came as a surprise to both me and all of the doctors.
So they haven't really discovered a reason for my anemia, maybe it's just malabsorption + I don't eat meat. All my inflammatory markers have been fine for 5 years (I've been checking regularly).
Anyway, my doctor would now like to put me on Imuran to prevent a relapse. I've read many studies on Imuran and I am not impressed at all. Adverse effects are common, it reduces quality of life and it's actual efficiency is doubtful. It's true that those taking it relapsed less than placebo group after 1 year but 1 year is nothing, and I've haven't really seen any studies about long-term effects of Imuran. What happens after 2, 5, 10 years of being on it? I have seen studies, though, implying that going off it increases the likelihood of disease coming back compared to control group going off the placebo. So it seems to me that you get used to weaker immune system and as soon as you want it back for whatever reason (there surely are other diseases waiting in the corner as we age) your Crohn wakes up. Even my doctor addmited that nobody knows exactly for how long does Imuran increase your remission periods. What we do know is that people flare up sooner or later, whether on Imuran or not.
So I am not really sure I am ready to give up my normal immunity for unknown and impossible-to-quantify benefits.
My idea is to do regular blood tests (every 30-45 days) + fecal calprotectin every 2 months and also colonoscopy every year. Should I have any symptoms of disease coming back or inflammation markers going up I'll go for colonoscopy even faster than planned. Do you think all this would be enough to catch the disease's recurrence early enough to start the treatment and prevent it from going out of control? My doctor thinks I shouldn't risk another surgery because I am too young to lose some more of my intestines. While this is true, I don't think the disease strikes so fast, at least in my case. When I ended up on surgery in 2008. it was after 4 months of ignoring my symptoms. I am pretty sure it wouldn't have ended this way had I gone to hospital as soon as my flare-up had started.
From reading people's posts here almost nobody who has ended up having surgery hasn't been doing regular blood tests and colonoscopies prior to this happening. And even those who are in remission seem to do their check-ups less frequently than they should.
Also, regarding my 5-year long ongoing remission - was I just lucky or what? I have drastically changed the way I think after my surgery, have removed most of the stressors from my life and have adhered to the diet that I think is likely helpful as well. I don't eat meat, milk and avoid greasy and fried foods as much as possible. I eat TONS of fish on daily basis. I think my daily probiotics are also very beneficial.
Anyway, my main question is: is it possible to control Crohn by regular check-ups (as written above) and has anyone tried it? Disease is likely to streak sooner or later, regardless of your therapy (or lack off it), so my logic says - why not try to catch it in it's earliest phase? Thing with the doctors is - they never really tell you to do your blood tests and colonoscopies so often and people usually adhere to it, because nobody likes doing these things anyway.
I used to manage my disease relatively well until early 2008. After ignoring my symptoms and fever for 4 months an abscess formed in my pelvis along with serious intestinal inflammation. I ended up having right hemicolectomy and also part of my terminal ileum removed + beginning part of large intestine. Over 60 cm was given for biopsy, but don't know if that was all that they removed, it might have been even more, from what I see when reading about these procedures online. I got my temporary ileostomy.
During long hospital stay I also had additional fistulas forming requiring few more (less major) surgeries. A year later (2009.) my ileostomy was successfuly reversed and from then on up to today I've been in remission and without any meds.
A year ago I developed a severe iron defficiency anemia and my calprotectin was 300+. I had to take many iron infusions (and even now ferritin is still extremely low). I thought the disease was back despite not having any symptoms. Well, I did colonoscopy (they even managed to enter 20 cms of small inestine), gastroscopy and barrium X-ray 2 weeks ago and they found NO sign of active disease, even biopsy is completely clear. This came as a surprise to both me and all of the doctors.
So they haven't really discovered a reason for my anemia, maybe it's just malabsorption + I don't eat meat. All my inflammatory markers have been fine for 5 years (I've been checking regularly).
Anyway, my doctor would now like to put me on Imuran to prevent a relapse. I've read many studies on Imuran and I am not impressed at all. Adverse effects are common, it reduces quality of life and it's actual efficiency is doubtful. It's true that those taking it relapsed less than placebo group after 1 year but 1 year is nothing, and I've haven't really seen any studies about long-term effects of Imuran. What happens after 2, 5, 10 years of being on it? I have seen studies, though, implying that going off it increases the likelihood of disease coming back compared to control group going off the placebo. So it seems to me that you get used to weaker immune system and as soon as you want it back for whatever reason (there surely are other diseases waiting in the corner as we age) your Crohn wakes up. Even my doctor addmited that nobody knows exactly for how long does Imuran increase your remission periods. What we do know is that people flare up sooner or later, whether on Imuran or not.
So I am not really sure I am ready to give up my normal immunity for unknown and impossible-to-quantify benefits.
My idea is to do regular blood tests (every 30-45 days) + fecal calprotectin every 2 months and also colonoscopy every year. Should I have any symptoms of disease coming back or inflammation markers going up I'll go for colonoscopy even faster than planned. Do you think all this would be enough to catch the disease's recurrence early enough to start the treatment and prevent it from going out of control? My doctor thinks I shouldn't risk another surgery because I am too young to lose some more of my intestines. While this is true, I don't think the disease strikes so fast, at least in my case. When I ended up on surgery in 2008. it was after 4 months of ignoring my symptoms. I am pretty sure it wouldn't have ended this way had I gone to hospital as soon as my flare-up had started.
From reading people's posts here almost nobody who has ended up having surgery hasn't been doing regular blood tests and colonoscopies prior to this happening. And even those who are in remission seem to do their check-ups less frequently than they should.
Also, regarding my 5-year long ongoing remission - was I just lucky or what? I have drastically changed the way I think after my surgery, have removed most of the stressors from my life and have adhered to the diet that I think is likely helpful as well. I don't eat meat, milk and avoid greasy and fried foods as much as possible. I eat TONS of fish on daily basis. I think my daily probiotics are also very beneficial.
Anyway, my main question is: is it possible to control Crohn by regular check-ups (as written above) and has anyone tried it? Disease is likely to streak sooner or later, regardless of your therapy (or lack off it), so my logic says - why not try to catch it in it's earliest phase? Thing with the doctors is - they never really tell you to do your blood tests and colonoscopies so often and people usually adhere to it, because nobody likes doing these things anyway.
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