My Crohn's and Colitis Blog » Chron's Disease » Crohn's for 20 years…new to this group
Crohn's for 20 years…new to this group
Question:
I am a medical student, and I am in dire straits in finding up to date information on Crohns Disease, and the quality of life after diagnosis. I know the pathophysiology of the disorder, I just don’t know likely prognosis, and different changes that you all have to go through. I would greatly appreciate any feedback I could get on this topic, I have a patient right now that is asking me questions I just don’t know the answers to! Thank you so much! Bruce
Response:
David – I’m in complete agreement with you re: imuran vs. steroids and am enjoying the first actual remission of symptoms via some good luck with imuran. Too bad it doesn’t work for everyone and too bad it takes to long to work when it does but with that said, it’s still the easiest drug I’ve taken from a side-effect standpoint in spite of the fact that I had a month of nausea at the beginning. I’ve been told by several people now that the iv imuran is being tested and is doing quite well, kicking in within a week in some patients so this might be a real breakthru in treatment. Imagine going in, getting thrown on TPN and NOT having 120mgs of medrol slammed into your veins! That would be a great improvment – Mick
Response:
I had a major Crohn’s Disease flareup about three years ago and was put on 80 mgs a day of Prednisone and was hospitalized for TNP treatments. Following a second flareup that year, I was put on Imuran. I have been on 50 mgs a day of Imuran since then and have remained in remission. I have not notice any significant side affects as a consequence of the Imuran. Most of the warnings about Imuran pertain to high dosages used by people who have organ transplants. I have my blood checked every three months and to date my white count and all other readings have remained normal. I have not noticed any increase in the number of colds or infections I have, nor in severity. Ideally, I’d like to be off of all medications, but if it is a choice between a flareup on treatment with steroids or imuran, I’ll take the imuran any day.
Response:
I’ve had CD for 11+ years and have been on 100 mg. of Imuran as a maintenance drug continuously since 1991. I’ve done very well on Imuran, with no real noticeable side-effects. As I’m sure you know, blood work does need to be done on a regular basis. Prednisone and Cyclosporin are used to treat my flare-ups. It would be great not to have to use these drugs, but it comes down to a quality of life issue. I’ve already had most of my large colon and part of my small intestine removed — so I don’t have a lot of room to play around anymore! Marianne
Response:
Jay & Tracy, Another thing to keep in mind is that, since Imuran is an immuno-suppressant, you have to be more careful about being around sick people. When I was on Imuran (for CD), I shared an office with a lady who was bringing her infant twins in with her almost daily. When they had the oral polio vaccine, my doctor and the local health department said I should not be around her children for a certain number of days (it may have been as much as 3 weeks), and I had to move to another office. Also, you’ll have to have weekly blood tests for a few weeks to make sure the Imuran isn’t affecting your liver – but the doctor will make sure you do that. Some people do very well on Imuran, and I wish you both the best of luck! Take care, Kerry
Response:
– Hide quoted text — Show quoted text – Anyway, the doctor has started me on Imuran which he says I will need to take for the rest of my life. Has anyone else used this drug? I would like to hear about your experiences. route. Tracy Hopefully, your doctor mentioned that you should not try to have children while on Imuran — there is a risk of birth defects (even when the father is on Imuran since it’s a chromosomal thing.) I only mention this because my doctor didn’t say a thing about it until I casually mentioned my wife’s and my plans to have another child. (I won’t start Imuran for at least a while now.) I have some reservations about going on Imuran "for the rest of my life" but it seems to be the nature of Chron’s Disease to make choices from a list of unpleasant things. At least now I have an excuse to wait so I can do a little more research on this stuff. It does seem to be the drug of choice now in treating CD. Jay
I also have crohns diease, and was started on imuran recently by my docter. however, my white cell count dropped almost immediatly to below acceptible levels, and i was taken off it straight away. i’m now on prednisone, and about to do a trial of metho- trexate, takeing 2.5mg a week for a month. I’ll tell you how it goes! Dylan.
Response:
I was diagnosed with Crohn’s when I was 16 and had my illeum removed when I was 18. I was led to believe that since my inflammation was so well located that the Crohn’s may never come back. So for 18 years I pretty much thought that my Crohn’s was ‘gone’ and that my discomfort was because I had two feet of my intestine removed. After the urging of my phsycian I went to a G.I. and had a Colonoscopy. He found that indeed I do have C.D. in my large intestine and at the resected area. This was not good news for me. Anyway, the doctor has started me on Imuran which he says I will need to take for the rest of my life. Has anyone else used this drug? I would like to hear about your experiences. I am also commited to finding an alternative to the drug route. My doctor also prescribed Questran to control my diarrhea and although this is my first day, I prefer diarrhea to the way this is making my digestive system feel. Any similar reactions? Tracy
Response:
Anyway, the doctor has started me on Imuran which he says I will need to take for the rest of my life. Has anyone else used this drug? I would like to hear about your experiences. route. Tracy
Hopefully, your doctor mentioned that you should not try to have children while on Imuran — there is a risk of birth defects (even when the father is on Imuran since it’s a chromosomal thing.) I only mention this because my doctor didn’t say a thing about it until I casually mentioned my wife’s and my plans to have another child. (I won’t start Imuran for at least a while now.) I have some reservations about going on Imuran "for the rest of my life" but it seems to be the nature of Chron’s Disease to make choices from a list of unpleasant things. At least now I have an excuse to wait so I can do a little more research on this stuff. It does seem to be the drug of choice now in treating CD. Jay
Response:
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