This forum is an un-mediated, patient-to-patient forum for questions and support regarding
Crohn’s Disease issues such as: Abdominal Pain, Arthritis, Bleeding (Rectal), Blockage (Intestinal), Delayed Development (Children), Diagnosis, Diarrhea, Fissures, Gall Stones, Growth - Stunted (Children),
Kidney Stones, Living With and Managing Crohn’s, Malnutrition, Medications – Drugs, Nutrition, Pregnancy, Protein Deficiency, Research, Skin Problems, Stress, Surgery, Symptoms, Tests, Treatments, Ulcerations – Sores, Weight Loss
Sudden weight loss of that order really needs to be addressed quickly, as you will be become malnourished.
Take care,
Liz in Cornwall,England.
Thanks for the advice. I am taking Asacol right now. I took Azathiorine before and ya' I didn't care for it. Please keep in touch, its great talking to people who understand what I'm dealing with and who understand crohns. The closest support group to me is about 2 hours away And my poor husband and kids have never met anyone other than myself who has had crohns. We are still learning so much. Thanks for your advice, its much appreciated!
My gastro said he has never known anyone tolerate methotrexate for 7 years without serious liver side effects, but guess I have always confounded general medical issues - didn't "present" normally with Crohn's - no pain, just severe diarrhea and weight loss, and when I got breast cancer 5 yrs ago, I had no palpable lump. It was found on a regular 3 yrly mammo, which is all we get here in England with our socialised health service. If I had known what I know now, I would have had private mammos in the intervening years, and perhaps the cancer would not have spread to my lymph nodes. Being a glass half full person, I try and find something positive in each and every day now, rather than dwelling on the past, or what may happen in the future. I do my research, am able to talk articulately to my doctors, and just so pleased to be alive, even with a somewhat curtailed lifestyle.
Hope you get some relief soon for your symptoms - if I can help in any further way, just let me know.
Take care,
Liz.
I also had bad nausea, and found that any drink with ginger in it did quell it somewhat. I seemed to have drunk gallons of non alcoholic ginger beer (cloudy and fizzy) and ginger ale (clear and fizzy), plus the occasional treat of Stone's Green Ginger wine - slightly alcoholic, topped up with ice and ginger ale. These drinks stopped me from becoming dehydrated. I did lose some 28 lbs during the 4 months of FEC chemo, but have put it back on thankfully and am steady at 112 lbs. perfect for my small frame and height.
Just a thought - many of my bc sisters have also found ginger very helpful in dealing with constant nausea.
Li.
Thank you so much. Your comments prompted me to get myself to the dr. I feel so much better. I am able to eat (with limitations) but I am holding my food down. I haven't had any vomiting and very little nausea. I am still have a lot of joint pain and I need to go see the doc again re: that symptom. Do you suggest any meds with little side effects. The doc gave me percocet for the pain but that isn't working so well. I didn't want to go the standard route of steroids to cure the flair up and thankfully the doc is treating my symptoms individually.
I hope you are doing well, I'm so happy to have found a crohns friends with the same "happy to be alive" feeling that I have.
I feel good on this forum being able to talk about my disease without feeling like I'm complaining. My husband says I never tell him when I'm not feeling well. But I'm so happy to be on this earth with my children that I don't like to complain about my crohns. thanks for all the advice.
Not sure which meds you want advice on - I take, on rising, one codeine phosphate (helps with the lower abdomen pain), one imodium to slow down the motility, one folic acid (necessary when taking methotrexate) and inject myself with 12.5mg of methotrexate weekly. (I take other meds for breast cancer and osteopenia). Mtx can be very toxic to the liver especially, but I have monthly blood tests and am tolerating it well. I don't feel I have side effects at all from mtx, but have had to stop my bc med, Arimidex, which has caused severe joint pains (hips,hands & feet). Stopped 4 weeks ago and the pain has diminished somewhat. Seeing GP 28th May for referral to a new Oncologist as mine retired last year.
You are right to steer clear of steroids. When I was dx in 1970, the dark ages as far as Crohn's was concerned, the only med to bring a flare into remission was prednisone, and the thinking then was it would keep one in remission, which has now been proven to be inaccurate. I was on steroids, varying amounts, for 30 yrs and this has played havoc with my bone density, which is classed osteopenic after various DEXA scans. I take alendronic acid (a bisphosphonate) weekly, and daily Calcichew/Vit.D to strengthen my bones and prevent further loss. Nobody told me all those years ago that steroids did this, perhaps they didn't know, but even if they had, there was no alternative to steroids.
Happily, there are so many new drugs now for Crohn's, it seems to be a question of trial and error to find one that keeps you in remission. Guess I discovered the holy grail when I found mtx on the internet and badgered my then gastro to prescribe it off licence. It is still not licensed in England for Crohn's as the mfrs feel there are too few patients to make the licensing costs worthwhile.
Are you on an immuno-suppressant? I remember some years ago when the Crohn's & Colitis Foundation of America (CCFA) had a website where questions were answered foc by a retired gastroenterologist, Dr. Eugene May. That forum is now defunct, due to legal problems, diagnosing/prescribing over the net. However, Dr. May did say that Crohn's patients should always be on an immuno-suppressant (like mtx), because the disease is incurable. I have not had a flare since taking mtx, except for a bad one when having FEC chemo for breast cancer and had to stop the mtx.
Take care Li - always happy to share my own experiences with you if I can help at all.
Liz.