Can anyone help please!

[Joolsaq]

I have come to this board hoping someone can help me or offer advice. I have stage 4 recurent ovarian cancer, receiving palliative treatment, it is incurable. I am 41 years old, have two children 4 and 7 and i will probably not see them 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 different spot! He is not interested in helping me as I am palliative. 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 (octreotide) 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 ****, 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. 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!  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. 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 presented like mine! Gee - wish there were other ways of becoming famous. Blessings to all. Jools from Australia

[Joolsaq]

Thanks Nancy - I had heard of this drug as well as Welchol but I didn't think it was available in Australia.  But it is.  It works the same as Questran, perhaps I might try but it could exacebate my problem by depleting bile salts and worsening steatorrhea.  But Thankyou for your suggestion.  AT least I know there is another bile salts malabsorption drug available here that I can try.  Right now I've added a digetsive enzyme called Creon and have gone off the Questran to see what that does.  

Thanks Liz - like you I think I am also born to be a warrior and survivor.  Have so far outlived my doctors predictions by 2 1/2 years!   I have a friend on Arimdex for breast cancer and it has also kept her ovarian cancer in remission for 4 years too.  I have tried tamoxifen and am now on Femara whilst Im on a chemo break.  I hope things imnprove for you and nausea and joint pain can be relieved.

[lizziecee]

Hi there, on the other side of the world.  Glad I could empathasise with you.... at times it feels like Crohn's is akin to the bubonic plague - no-one knows about it, and certainly doesn't want the gory details!  My current brilliant young gastro told me at my first private consultation (2 days before being dx with bc) that a recent Mayo clinic study concluded that Crohn's, with quality of life issues, is akin to stage 4 terminal cancer. How prophetic he was! Guess I was born to be a warrior, and survivor.

However, nothing will dim my fervour for living - as long as I can get up in the morning, only spend a half hour in the loo, I am happy. Not doing too well this past week, got terrible nausea and can't eat more than a boiled egg and toast. I have stopped my bc meds, Arimidex, because of severe joint pains, and hope to see a new Oncologist in the next 2 weeks - mine retired last year.

I think life really is a **** shoot at times - but somehow I soldier on - the alternative is unthinkable. I so feel for you Jools, being so young and having young children.
Hope your current research helps you to get better. Do try Fortijuice - there are 9 different flavours - all yucky - but it kept me alive for the 4 months on FEC chemo.

Take care, and if I can help, even just being a "listener", please get in contact.

Liz.

[NancyStrader]

Try a med called : COLESTID - if you take 6-8 tabs daily you will see a huge difference in stopping your diarrhea, it changed my life !  It has no side effects and is a miracle drug for relieving diarrhea, you will be able to leave the house, have one bowel movement a day and it will be solid.  

I cannot function without it.

Hope you are able to find a doctor to prescribe this for you , it will literally change your life in this area anyways.

Take care and hang in there !

Nancy

[Joolsaq]

Thanks Liz for your post.  I know you can relate to the frustration of dealing with the big C as well as malabsorption/chronic diarhea/steathorrea too.   Somedays all too much, espec as I have recurrent cancer and incurable.   I am constantly reearching, looking for some way in which to improve my QOL, it's crazy, its not even about fighting cancer the last 12 months, just fighting trying to get nutrition from diet and a break from the bathroom. I have since found out that I shouldn't be doing Questran, as I have horrific steathorrea, and this delpetes the available bile salts even further.  About to look into a medium chain triglyceride as apparently the large bowel can absorb something from MCT supplementation.  Also looking into supplementation through drinks such as Fortijuice, Pepetinex, somthing that agrress wth me.  Anyway, just wanted to say thankyou for your post and I hope you stay well.  Might go through old threads and see if I can gleen anything new from these.  Jools

[lizziecee]

Hi Jools - what a terrible mess, and I so feel for you, having been faecally incontinent myself, even in the street, whilst on FEC chemo for breast cancer. This was exacerbated by my Crohn's disease, of some 33 yrs then, and I had to stop my normal chemo, methotrexate, in order to have the bc chemo. I also couldn't eat - not even home made vegetable soup with the solids strained out without dashing to the loo before I messed on the carpet. Some days I could barely get the 6 steps to my bathroom from my bed without "messing" myself.

Our medical problems are entirely different, and I am no doctor or nurse, and can only relate my own experiences with concurrent Crohn's and bc. At the time I was dx with invasive ductal bc, plus associated intermediate DCIS, and spread to my lymph nodes, I truly thought I may be terminal. After dismissing my first arrogant and patronising Oncologist, who said I would die of septicaemia if I did not stop the mtx, I saw a young female GP who luckily for me, worked only one morning a week in the Oncology suite, Friday - my day for chemo! Had to get lucky sometime I figured. She was an angel on my shoulder - prescribed a small daily dose of dexamethasone as I had a steroid (prednisone) induced psychotic episode when dx with bc, and my gastro refused to prescribe any more. The Onc prescribed a vitamin/mineral nutrient rich juice, Fortijuice, which the hospital pharmacy delivered direct to my home. Each carton had 300 cals, and I drank 3 a day - other than this all I drank was ginger beer and ginger ale (both non alcoholic) and the occasional inch of Stone's ginger wine topped up with ice and tonic water. I did lose 28 lbs during the 4 months of FEC chemo, but have put it back on now.

I can also relate to your consultations with your gyn oncologist and gastro - I was advised by my Oncs and gastro that they had never dealt with a patient who had my two concurrent diseases, and they did not know what to do - kind of "suck it and see". I even emailed all the major hospitals I could think of in the USA (Mayo, MD Anderson, Johns Hopkins,Cedars Sinai etc)  and the two dedicated cancer hospitals here in England, along with the only IBD hospital in London - they all replied but again said they had no experience of my concurrent diseases. I felt like a freak!!  

As soon as I went back onto methotrexate (I self inject 12.5mg once a week) I started to flourish and am doing well, some 4 years later. I take one codeine phosphate, folic acid and imodium on rising which helps slow down the visits to the loo, but also take Arimidex to prevent a bc recurrence, and the bisphosphonate Alendronic Acid once weekly, and Calcichew/Vit.D twice daily. The latter is to prevent further bone density loss, due to 30 yrs of steroids and 4 yrs of Arimidex. I had spontaneous fractures in both feet last year and spent some time in a wheelchair and on crutches.  This is causing severe hip, feet and hand pain, so I have stopped it for the last 2 weeks to see if this drug is the culprit. A recent bone scan showed osteo-arthritis in these areas, but of course, my mind does wander to bone mets!  I haven't had any resections but a recent MRI scan of my lower abdomen showed two strictures in my small intestine, so am looking at resection in the near future.

Sorry I can't really offer any experience of value in your situation, but wanted you to know someone out here in cyberspace truly enmpathises with your problems, and cares.

Hope someone else comes along soon for you, with more pertinent experience than I have.

Take care,
Liz in Cornwall, England.