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Author Topic: Medical dilemma  (Read 16097 times)

groundhog

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Medical dilemma
« on: January 06, 2014, 10:24:40 PM »

Hi all again,
I suppose all my moans and groans on here are linked.  They are certainly influence by a medical dilemma I have hanging over me.  I would really appreciate your honest opinions.
I developed chrons disease when I was 24 - I have a bag ( Ileostomy) which means I have no colon.  It's not a problem.  When I had the surgery 30 years ago they left my rectum in as was the done thing plus I was very ill at the time.  When I was 30 I developed endometriosis and from aged 30 to about 50 I had 30 plus operations.  Some of these were large ops and I had many complications after with adhesions and infections.  Since the meno things have improved considerably.  But my old consultants have retired - they always used to tell me NO more surgery unless your life is at risk as my insides are a mess.  But 3 years ago I had a scan which incorrectly suggested ovarian cancer.  All the years of cyst drainage and various other things have left lots of scar tissue and scans are no longer very reliable.  The latest thoughts on rectal chrons are also it is unsafe to leave the rectum in owing to increased cancer risk.  So my new consultants now want me to have full hysterectomy plus removal of rectal stump.  It is big surgery.  I am well at the moment which makes elective surgery so very difficult.  Plus I care for my mother - she has had brain haemorrhage - it is likely she would have to go into a home if I wasn't around.
So ladies would you have major surgery for a theoretical cancer risk?  Plus of course if I have my rectum out it may make sex very difficult ( for a man it can cause permanent impotence) for a woman it can cause all sorts of horrors.  I am scared of having the surgery and scared on not having it,  the consultants say it will be long and difficult surgery.  It is not essential ATM but is there ever a right time - doesn't seem to be in my life.
I don't know what to do and no one can tell me what to do.  What would you do?  ???
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honeybun

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Re: Medical dilemma
« Reply #1 on: January 06, 2014, 10:36:48 PM »

What a dilemma and not really one that anyone but you can resolve.

Is it possible to have your hysterectomy done and monitor the other situation. I would think that a double surgery would be very hard to cope with and recover from. Are there tests that could keep a close check on things.
Sometimes I think the medical profession just look at us a combination of bits and pieces without considering the impact it will have on your life.

Sorry that's not much help.

 :hug:

Honeyb
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groundhog

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Re: Medical dilemma
« Reply #2 on: January 06, 2014, 10:40:28 PM »

No honeybun thank you.  Problem is of they open me up to do the hysterectomy they say it would be madness not to remove the rectum and vice versa.  It's an impossible decision - I am routinely monitored but obviously that is not 100% as things can be missed as scans are flawed on my messy pelvis.  So the consultant wants it all out.  There is a lump on my ovary but it has been there for 10 years - they think it's an endometrioma so completely benign but you know what doctors are like - until it's out they can't be sure.  It is so difficult .  Thank you for your understanding x.
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honeybun

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Re: Medical dilemma
« Reply #3 on: January 06, 2014, 10:56:47 PM »

I'm just sorry I can't wave a magic wand for you.

Others will be along with wise words and support. You are never alone on the forum and we can be a sounding board for you as you make a very difficult decision.

What does your hubby think.


Honeyb
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Joyce

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Re: Medical dilemma
« Reply #4 on: January 06, 2014, 11:03:52 PM »

That is quite a dilemma indeed groundhog. As HB says only you can decide.  Not sure what I'd do if it was me, but feel I'd want tests, scans whatever, but would be looking for another opinion. Is that possible at all? A hysterectomy is a fairly big operation in itself & takes anything from 6 weeks to 3 months generally to recover from. I'm assumimg they would remove your ovaries also, as there is a lump, albeit benign.

I had hysterectomy mid 30s & ovaries were left at that time, only for them to have to remove them 10 years later. One, my left one, was so badly hidden due to adhesions that op took over twice as long. Although I did recover fairly quickly as it was done by keyhole.

Look into all your options before deciding & do let us know how it goes.
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jgr

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Re: Medical dilemma
« Reply #5 on: January 06, 2014, 11:11:29 PM »

So wish i could tell you what to do for the best, but as all the other ladies have said, only you can make this big decision yourself. xx
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Dancinggirl

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Re: Medical dilemma
« Reply #6 on: January 06, 2014, 11:13:24 PM »

Oh Groundhhog
I'm afraid I understand too well your dilemma.  My younger sister had Ulcerative Colitis and has had an ileostomy since she was 19. 
My older sister has had Crohns since adolescence (had at least 5 operations followed by complications) and then following a major car crash 12 years ago had much of her intestines removed after contracting MRSI.  She has recently had tests for bowel cancer and abnormal cells were found ( she is now 67 by the way).  I spend many days at the hospital with her visiting a variety of consultants - she is terrified of surgery in case she gets MRSI again and ends up on life support like last time. She has to have another endoscopy in 4 weeks to monitor the abnormal cells.  Her gastro-enterologist is wonderful and supports her wish to avoid any surgery so I think she will just have monitoring for as long as possible.  She was supposed to have a her gall bladder out but the surgeon she saw about this took one look at the scars on her body and said " no way". Her quality of life is generally not good - there is so much wrong with her, dangerously high blood pressure that they can't seem to get under control, her joints are crumbling because of all the steroids she has had to take etc…. but I am thankful that she is still with us.
It sounds as though you are currently in a stable time health wise.  I know surgeons have a tendency to be a little 'gung-ho' as they are not good at taking an holistic approach  - they just operate and let others do the after care.
Do you have a physician Gastroenterologist or even your GP who you can talk this through with? Someone who can look at the total picture and help you make the right choice?  Do you have the option of monitoring over the next months or even years - even if it means nasty invasive testing? It's such a tough decision for you.
I've faced so many tough decisions - fortunately not major health decisions such as yours - but i always ask lots of questions - talk to as many professional people as possible.
I'm off to the hospital with my sister again tomorrow to see yet another specialist.
My thoughts are with you.  Keep us posted re your progress.  Love  DG x
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Taz2

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Re: Medical dilemma
« Reply #7 on: January 07, 2014, 12:01:11 AM »

Is there anyone on the Crohns forum who can help you groundhog? A young friend of mine with Crohns has received some support on there http://crohns-disease.org.uk/forum/Blah.pl

Taz x
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CLKD

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Re: Medical dilemma
« Reply #8 on: January 07, 2014, 11:32:53 AM »

Nope.  If I remained well I would put off any major surgery unless it became an emergency.  You have plenty going on in your life right  now and worrying about the possibility of cancer after all these years adds to that worry.  Does your consultant have statistics for the possibility?

Your original Consultant would have seen all the work and after-effects of surgical intervention.  This Consultant can see on scans etc. what is 'in' there but not the reality. 

I was given Tamoxifen after breast surgery 'in case there were any cells left behind'.  Well the radiation therapy should have got rid of any cells and as the drug made me so ill I felt like dying, I stopped taking it.  It is also known to cause womb cancer.  That was in 1996  ;) ..........

In 1993 I had a polyp which the Consultant insisted I had removed.  I was very depressed at that time so postponed the op and the week I was supposed to have surgery I was suicidal for other reasons.  The polyp disappeared with menopause. 

When I read your initial thread my gut reaction was 'no surgery' - what was yours when the Consultant suggested it?
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Rowan

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Re: Medical dilemma
« Reply #9 on: January 07, 2014, 11:59:18 AM »

I think I agree with CLKD, having said that you are perfectly entitled to a second opinion, this is what I did when I was told I needed a hysterectomy ( minor I know compared with the operation you would be facing) but it would give you added information to make up your mind.

Consultants do have different ways of approaching treatment.

I do wish you well in what you decide groundhog.
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groundhog

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Re: Medical dilemma
« Reply #10 on: January 07, 2014, 12:26:39 PM »

Thanks ladies for your replies.  I think the problem is without a crystal ball no one knows.  I could have the op and be fine with no complications.  But historically and as you know DG people with chrons do have complications.  I am so sorry to hear about your sister and can completely understand her reluctance to have any more surgery.  I have chrons in my rectum which causes arthritis so all in all everyone thinks it's better out plus the chance of cancer developing there is about 30% higher.  But my aunty who has chrons has also had rectal cancer linked to chrons so there is a family link too.  But as you say CLKD this is definately not the right time,  I am depressed stressed overweight and totally fed up.  The thought of undergoing major surgery in a hospital that is 80 miles away from home when my family like is so strained is horrendous.  Silver lady - I have had a second opinion and they feel the same but feel I will need the op one day.  They all want to avoid me having this surgery  as a emergency because god knows what would happen - it needs to be planned with surgeons who know the history.
Taz - I am a member of the Ileostomy association where members have had the surgery and been ok although they all say it's a long recovery .  But we all know forums don't always paint the correct picture as maybe only the ones with positive experiences have responded to me.
It is a dilemma and I don't know the answer,  my gut feeling is no leave week alone and keep getting monitored.  But when I see my surgeons in a few weeks time i will be reminded I am putting off the inevitable blah blah .
Thanks again everyone - it really helps xx
( does dr currie only deal with meno related problems or do you think she would help me on this dilemma)?
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honeybun

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Re: Medical dilemma
« Reply #11 on: January 07, 2014, 01:49:20 PM »

I think she specialises in meno problems alone for her email service. What a position to be in.
I think your sister, given your health problems, should be a lot more supportive. How on earth are so many people relying on you when you are the one who needs support.

Hopefully just talking it through on the forum may help you see things more clearly.


Honeyb
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CLKD

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Re: Medical dilemma
« Reply #12 on: January 07, 2014, 02:06:51 PM »

Quality rather than quantity of Life - any one of us could get run over by a bus tomorrow so surgery for something so complicated ..... 
:-\  ........ if the Consultants at your Hospital are aware of your current condition then it won't be an 'emergency' as such, a rushed job maybe but if they know about you then they will be able to deal with what ever happens.  What percentage of people keeping their rectum have cancer and in what age groups relating to when they had surgery?

Also: how can the rectum cause arthritis?  Arthritis is due to wear and tear usually on weight bearing joints ........ so the cocyxxc (sp)  ::) is the nearest 'joint' to the anal canal and is a fused joint from times gone by.  Arthritis is usual in most people, whether it is symptomatic or not depends on the amount of wear.
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Joyce

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Re: Medical dilemma
« Reply #13 on: January 07, 2014, 04:07:25 PM »

Think groundhog meant the Chrons causes the arthritis. Think it's one of the many symptoms.
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Taz2

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Re: Medical dilemma
« Reply #14 on: January 07, 2014, 04:09:05 PM »

It's not osteo arthritis CLKD but a sort of inflammatory arthritis - like rheumatoid. You can read about how Crohns affects the whole body here if you like http://www.patient.co.uk/health/crohns-disease-leaflet

I have a friend with it - she's a mum to two small children and is in her late twenties. She is fantastic in how she deals with it all but it is really upsetting to see her in pain a lot of the time.

Taz x
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