| Can anyone help please?
Posted by Jools on 9/5/2008, 12:23 pm|
I have come to this board hoping someone can help me or offer advice. This will probably be a long post! I have stage 4 recurent ovarian cancer, receiving palliative treatment, it is incurable. I am 41 years old, have two children 4 and 7 which I will not see grow up. But I want to live the best I can for them whilst I am alive. In May 07 I had a total bowel obstruction due to scar tissue and tumor and had an ileocolic bypass. Lost part of my ileum, terminal ileum, ileocecal valve and all transcending colon. Since then, some 11 months ago, I have had chronic diarrhea, as often as 20 to 30 times per day. QOL sux especially as my life will not be a long one and being 'housebound' most of time due to this diarrhea is intolerable to say the least. I am B12 deficent, magnesium deficent. vit d and calcium deficient, blah blah blah! I am getting injections and infusions etc. Also have lost some 16 kilos in weight as nothing stays in. My hair falls out all over the place and not from chemotherapy either. I have tried absolutely everything over the last 11 months. Saw a gastro specialist who just wants to give me an ileostomy and send me home to die, just redirects the diaarhea/steathorrea to a differnt spot! Dietecians just want me on permanent TPN as I cannot get any nourishement from food but I am not there yet. I have kids to raise as long as I can. And I want to be able to enjoy a meal with them too. This is what I have tried, Questran 8mg x 3 per day, sandostatin LAR implant last 6 months, gluten free/dairy free, probiotics, codeine phosphate/immodium, homeopathy, adding fibre to bulk things up eg metamucil, antibiotics in case infection but all clear, low res diet, smaller meals, no alcohol/caffeine, changed antidepressant meds to something old extremly constipting. Nothing works. It is crap, I know I will not be here on this earth a long time, I want to live in the day, but this bowel never gives in, gives up, it just goes and goes and goes. Continual broken sleep due to bowel activity, wear incontince underwear at home, just so degrading etc. Cant even read a story to my 4 year old without crapping myself everywhere. I am frustrated and sick of this. Thought terminal cancer was enough to cope with on its own but it seems not. There are so many things I want to do and experience with my kids before ovarian cancer gets me but I am unable to because of my malabsortion/diarrhea issues. As an example of my day, I had been to the toilet 10 times before 9.30am this morning...I actually blogg everthing I eat and everytme i poop, including consistency, looking for some pattern but there is none! what a joke...this is how I live...how do I raise kids like this, take them to school, all beyond me. I do the grocery shopping and spend most of the time kneeling down at bottom shelves, with heel of my foot on my butt hole to stop bowel emptying urges. Surely this is a bad dream and I will wake up soon but I know it is not. I found out that Welchol and another drug called Colestipol may work better than Questran but neither are avaialable in Australia. I am going to start Creone next week and see if that changes the status qou, maybe it might help being a digestive enzyme. Anyway if anyone out there can offer me any advice, please do. You can also write me directly to me email address joolsc@optusnet.com.au I am desperate, very desperate, the clock is ticking as far as time goes,and I am in the toilet, as usual.If you dont laugh , you will cry right! Thought I would try a Chrones message board as I know many of you have had resections of this part of the small bowel and also suffer from bile salt malabsorption. My last gastro said he has never met anyone like me with this bad a problem, my gyn oncologist said he had heard everything about ovarian cnacer until I came to see him, no other case prsented like mine! Gee - wish there were other ways of becoming famous. Blessings to all. Jools from Australia
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