Cecelial - I was upset by your remark " chronic disease could be considered Crohn’s or something relatively controllable", sounded very dismissive. Do you have any idea how difficult it is to “control” it? I would guess not, unless you know someone who has had 37 yrs of intractable Crohn’s. That seemed a rather patronising remark to some of us who have breast cancer and Crohn’s. Do you actually know anyone with Crohn’s, and have listened to their problems? I know it is still a taboo subject in England - nobody wants to hear about bowel problems. Cancer, in whatever form, is a relatively easy subject to discuss compared to IBD.
I got Crohn’s at 24 yrs of age, very frightening when you only weigh 5 stones, and have diarrohea 20 times a day, and consequent severe malnutrition, with a tube in your stomach to get essential nutrition. I was given a 50% chance of coming through the laparotomy and my parents drove some 500 miles through the night the day after I was operated on. The early meds of steroids, over some 30 yrs, have played havoc with my bones and I am now on weekly self injected chemo to put my Crohn’s into temporary remission, as well as bisphosphonates and Calcichew/Vit D tablets to strengthen my bones.None of these meds are without serious side effect.s.
This is not like asthma, (with all due respect to quackers) where known drugs can control the situation, but a trial and error complex problem. My gastro said I have “empirical problems”, which I had to look up in the dictionary as I didn’t understand what he said. Hubby said: “he doesn’t know what to do, is flying by the seat of his pants”. Luckily I am married to a bright man. However, there is some hope on the not too distant horizon - medics in the US are already doing leukapharesis for Crohn’s as well as stem cell transplants - they found recently, quite by accident, that autologous stem cell transplants given to patients for leukaemia CURED their Crohn’s - not ammeliorated it, or put it into remission., but cured. Music to my ears. So this is an exciting developement for me.
To me, my long term Crohn’s problems are no different than being dx with mets from bc. My bone marrow is in a mess,with enlarged red cells, my haemoglobin too low but my current treatment is to continue with cytotoxic methotrexate.because there is nothing else available. At least with bc, there are numerous alternatives meds… My gastro said two weeks ago: "Liz, you have to decide whether you want quality or quantity of life. How do I choose? My breast cancer surgeon said to me 4 years ago, when dx with bc: “You will most probably die of Crohn’s than bc”. I think that puts my bc disease in perspective. I now have a recently found stricture of my small intestine and my gastro says it is life threatening if it bursts. I am currently having tests to see how far the narrowing has become, and dreading each mouthful of food I take.
I have found dealing with Crohn’s so much more difficult than breast cancer - and I had 4 months of hospital prescribed Frutijuice, not one morsel of solid foods, when on FEC chemo.
There is so much knowledge around about bc, but very little about Crohn’s, which is still classified as an orphan disease by the National Institutes of Health in the US. My gasto said that people like me, with panCrohn’s Colitis (ulcers and crypt abscesses through the whole gastro tract, from mouth to anus) according to a Mayo Clinic survey have as diminished quality of life as stage IV terminal cancer patients. I live with the constant fear of recurrent severe rectal haemorrhages (have been hospitalised more times than I can remember with these), live daily with constant diarrhoea and abdominal pain, and that my stricture will burst. So, tell me please, how much more difficult it is to live with breast cancer? I have to live with both. I know breast cancer kills daily, but so does Crohn’s, although in less than significant numbers. The numbers do not mean that we are not at as much risk of dying a dreadful death from bleeding, as bc patients with mets. We probably don’t even get onto any stats.
Quackers - I am with you - if I die from Crohn’s, which I probably will, the fact that I had invasive breast cancer, with local spread to my nodes, will count for nothing in the statistics.
Mole - I was actually seen on a Saturday morning in my breast care centre in Plymouth - for suspected IBC, which turned out to be Mondor’s disease. Really surprised at such good treatment, and I think I live in the back of beyond here in Cornwall.
Sorry for the rant - but I don’t know anyone I can talk to positively about bc and Crohn’s - I met a lovely young Scottish woman 35 yrs old on an American Crohn’s site, 4 yrs ago - she went onto get a pancreatic tumour and died this past February. Crohn’s is an insidious disease that no-one wants to know about.
Liz.