Menopause Matters Forum
Menopause Discussion => Other Health Discussion => Topic started by: groundhog on January 06, 2014, 10:24:40 PM
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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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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
x
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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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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
x
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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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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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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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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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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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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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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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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
x
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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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Think groundhog meant the Chrons causes the arthritis. Think it's one of the many symptoms.
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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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I echo HB, how on earth is your sister able to use you for childcare in such a cavalier fashion when you are so unwell?
Personally I would wait and see, major surgery is not something I'd rush into unless I had to.
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"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"
groundhog I think you know in your heart of hearts what you should, you have really answered your own questions.
What you need is backing and support from your family, that is what your real problem and dilemma is, x
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Yes silver lady there is some truth in what you say. At the moment I seem the only one with a stable life. My mother is totally dependant on me (plus carers but it's no where near enough). My sisters life is chaotic and she is looking for work so if I wasn't around it would have big implications there. My daughter and her long term partner have split up so there is no stability there. My husband and I seem to argue constantly, he resents the situation with my mother - he knows it's not her fault and he is supportive but can see me getting worn out day in day out. He is self employed and seems to work more now than ever as to be honest he doesn't like what my life has become. Plus we can't have intimacy very often owing to flaming VA'!!!!!!!!!! To risk a big not urgent op would put massive stress on everyone including me as I would hate to be sat here trying to recover with bedlam all around me. The complications from surgery are worse than the surgery sometimes with bowel obstructions and infections. I'm not saying it would happen but it has happened in the past and believe me it's awful.
CLKD - yes sorry it is inflammatory arthritis linked to chrons disease. There is no guarantee having the rectum removed would relieve the arthritis though as chrons is systemic .
Must dash now - will spk later - thank you my lovelies xxxx
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Hi groundhog - are you not able to have a biopsy of the lump on your ovaries through some sort of keyhole or minimally invasive method? It sounds like they want to take the ovaries out in case it is not benign but can't they find this out? Or is it that they want to remove the lump in case it becomes cancerous later on?
What you want is to be able to make the decision on the surgery for the right reasons rather than as a way to take a break from all the other very difficult issues in your life.
Hurdity x
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Yes Hurdity you are right - sometimes I think if I had the op everyone would have to cope and deal with the implications. But my mother would probably have to go into care and I would hate that unless I had no choice. Without the daily stimulation from us she regresses and becomes very subdued - she is only 74 you see so she is quite young. But to have the op just to escape from my current life is madness. I have asked about a biopsy but he won't do it. He says if it is something pre cancerous he doesn't want to stick needles into it. The analogy to my situation is similar to ladies who have the beasts cancer gene I suppose although the likelihood of them developing cancer is much higher. Still horrendous decision to have such intrusive surgery for something that may never happen. I suppose in my case there is this projection on my ovary plus the rectum so they feel it's better out. If sent win now really as if something did develop think how I will feel knowing I've had all this time to sort it out. It's horrible and a real dilemma. But thank you all so much it has really helped me today sharing this with you all xx
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Dear Groundhog,
I have been following your posts and have a few thoughts.
You are the most important person in this situation. You have done your research. You have most of the information that is known to help in your decision making. I suggest you have a session with either a good councillor or life coach. They will not advice you, but have skills to help you clarify your thoughts.
As to your family. Family dynamics can be very complicated. We all have a part to play. Are you really indispensable? Would things really fall apart? This may the opportunity for others to be forced to step into the breach, when you cannot. Is there a part of you that feels it needs to be in control? The fear of losing independence? Maybe being forced to take a step back, let go will be good for you? Good for your family?
To be able to look after your family, you have to look after yourself first. Think of the safety instructions given on aeroplanes. Put your oxygen mask on first, before helping others.
The other thought I had was that if you decided not to go ahead, and then you became ill, how would your family feel if they realised that you hadn't gone ahead because of your family situation? Would that be fair to them?
I write this as I have been forced to take a backward step in life for the past few months. I know my circumstances are different, but it has allowed my family to step up and for me to let go. I am learning that it doesn't matter that the house is untidy and my husband is learning how to use the vacumn cleaner, use the washing machine and cook for me!
I wish you all the best, Ju Juxx
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Sorry, just catching up with this. I would base the decision on how soon/how urgent the hysterectomy is. If it's vital that you have it soon, then I do think you'd be best to have everything done at once. It would be peace of mind for you and your husband and the rest of the family would just need to be able to manage without your help. That might sound harsh, but you do need to put your own health first.
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If Social Services know that you require surgery they can find somewhere for your Mum or provide 'extra' care in her home. That way no one seems rushed!
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Thanks again for your replies.
JuJu- I have had counselling in the past as reading my posts I do have issues :) . There is a shortage in my area of such facilities but I did find it useful as my husband and I have reached stalemate on most topics. I think the bottom line with whether I do or don't have the op is I am scared. I have had over 30 ops some of which have been big and I have had complications. But I had to have those big ops - they were life savers and were carried out when my chrons was raging. But now I am well and so to have such a big op is so difficult. No surgeon is going to tell me not to have it - they say it has to be my decision.
Thank you for allowing me to share this with you - it really helps xx
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What scares you the most?
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As I said before, my sister has a very similar history to you and she is terrified of having any more procedures. Keep us posted about your progress.
Hopefully in the not too distant future you will get some breathing space from all the stress that surrounds you and you can get through the op and move forward with your life in a more positive way.
I wish you well. Lots of love DG x
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CLKD - well it's a big op. Hysterectomy on its own is quite big but removal of the rectum is also considered quite big -plus I can't imagine how it would feel which is daft know but ppl don't always have straightforward recoveries. I then dread coming home and not being able to do anything . If I have a straightforward recovery then great but I am terrified of bowel obstructions - ive had several and it's worse than giving birth. Faecal vomiting and excruciating pain. Of course this may not happen it I think I am so down ATM I can only see the negatives. But I am equally scared of going for my routine surveillance and something nasty has developed since the last one!! My husband and I aren't great - that doesn't help. I don't really want to be dependant on him wheni recover.
DG - yes I can understand how your sister feels and she has my sympathy - thank you for your kind words.
Xxx good night ladies xxx
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Lily - hello - the hysterectomy isn't urgent - they just don't know what this projection is until it's out. It has been there for years tho so chances are it's fine but I think doctors don't like lumps on the ovaries - things change so the standard approach is it has to come out. Once they open me up they would remove the rectum as it would be mad to leave it there as that too needs to come out one day. Thank you for your response xxxx
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Groundhog,
I had my rectum out 11 years ago and an ileostomy .
Whilst I can vouch it is a big operation, I do know that the recovery these days is so much quicker, most people seem to be put on an enhanced recovery programme, which wasn't about when I had mine.
I was off work for 3 months, and went back on a phased return. Within 6 months I was flying to China and Russia for work.
You will get a lot of support from stoma nurses...and that will be ongoing, even 11 years later I can just pick the phone up if necessary, which I hardly ever need to do.
I can't advise on your other issues but I do know there is a very good life without a rectum..just alternative plumbing really!
I can recommend the IA forum for all your queries, many threads on there about whipping the rectum out.
Best wishes.
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:thankyou: Milly
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Hi groundhog,
If you feel a session with a life coach would be of benefit, you do not have to do this face to face. You can opt for telephone conversations. My husband works very successfully with people not just in this country, but internationally. Have a look at websites and get a feel. I am a great believer in gut instinct about people. When I opted to see a councillor, I looked at websites and got a good vibe from the web site. I worked with a life coach from the USA by telephone. He could 'see' a lot more by not being distracted by my expressions and gestures and really hear what I was saying. Both have made a huge difference to me. Best wishes, Ju Ju
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Firstly thank you Milly. The fact you have had this done is very reassuring - I am a member of ia and have listened to their posts on the subject and yes it is helpful. I think I need to sort my mind out first - that is becoming clear. Mu negativity is not helping anything or anyone as obviously if I think the worse I am never going to have it done!
JuJu thanks again for your input. Does your husband have a website I could look at? Not sure if I should ask that here?? Maybe you could pm me if you think it's better?
I feel more positive today and once again thanks ladies xxx
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:foryou:
Taken me long enough - but just found smileys!!
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Having a choice is always harder than not, but perhaps it is better to take elective surgery while you are well, and not as an emergency, with all the toxicity involved when ill.
This was my choice when the statistics of bowel cancer were presented...sometimes you just have to trust the expert. I have met people along the same path who have gone on to develop tumours, so I consider myself lucky that I was offered this surgery.
Just another thought, people who use forums like IA are in general seeking answers to problems...there are many more out there living perfectly normal lives without a rectum.
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Thanks Milly. Not sure if you had chrons or UC but I have chrons and have been told the risk is about 30% but then again they are not sure! Things are getting clearer in my mind and I know I have to do this. I'm 54 this year and the older I get the more riskier the surgery. If I leave it and something does happen - I will know I have had all this time to sort it out and didn't. Of course I could leave it and be fine but no one knows. Plus it's the ovarian problem as well.
Talking has helped and I would like to thank you and everyone again for allowing me to do just that. :hug:
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I put off breast surgery for 3 months until my depression was controlled with meds., I was more able to cope!
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Just had shoulder surgery, I know it's not the same thing, but I will not have surgery again unless it's life/death. So for me I wouldn't opt for surgery
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Hi groundhog,
Just sent you a pm. Ju Juxx
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Bumping this up sorry - having bad week again, the medical dilemma weighs heavily on my mind again. To have major surgery electively is so difficult - I worry about having the op and I worry about not having the op. The meno has completely removed any decision making skills I had - I can't decide on anything anymore.
So can I put the question to you again ladies -
Long standing health problems and surgeons have suggested hysterectomy and removsl of rectum. Hysterectomy because I have a projection on my ovary which has been there for years but they don't know what it is. Scans and MRI no long we reliable because of extensive surgery and scar tissue skews the results. Rectum removal because of long term inflammation owing to chrons increases cancer risk. I am currently well, care for mother and sisters kids. I am unhappy overweight and don't know which way to turn somedays. This op has taken over my head - I could leave it but is there ever going to be a right time - my daughter gets married next year . I just wish I could make a decision and stick to it. In my negative meno head it feels like if I have the op I will be agreeing to have a car crash. I've had lots of complications following surgery in the past but if was many years ago. I have really good surgeons now but I am in BUPA wch I don't think I will be able to afford for much longer, getting too expensive the older I get.
I know you have advised me before ladies so I understand if you don't wqnt to comment again.
Thanks ladies xxxx
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When did you last speak with your Surgeons? How about an up-2-date consult, explain that your daughter is getting married and go from there. I think that we have to be in the right place in our minds before surgery, certainly I postponed breast surgery from the feb. of that year until the June, by which time the ADs had kicked in so I dealt with the surgicial intervention, the unexpected results, treatment etc. differently to how I would have in the Feb..
If you elect for surgery once the wedding is over, you will have 'everything out of the way'. If you have a longer recovery than expected, you will be more relaxed so that 'nature' can do her work, rather than trying to rush recovery in order to be at the wedding. Remember too that surgical skills have improved even in the last 5 years.
Have that chat with your surgeon and let us know how you get on? :foryou:
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Hi groundhog - of course we don't mind commenting further on this. You are facing a really tough decision. Would it not be possible to just remove the ovary first of all rather than a complete hysterectomy?
Taz x :hug:
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I have thought about this a lot groundhog and what I would do in your position, I think on the days I felt well I would hesitate.
On the other hand reading Milly's post about her rectum and ileostomy op and her good recovery would give me confidence.
A hysterectomy with ovary removal does take time to recover from and then you have to cope with hormonal symptoms, though some ladies are lucky and don't have too bad a time with it and HRT helps. If only one ovary is causing concern, make sure you keep the other one.
It seems to me its the actual decision that is causing you problems, when and if you do, you must stick with the decision and go on from there.
Really only you can decide groundhog and its a tough one.
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Hi Groundhog,
I've just read your original post again. You set out your dilemma very clearly. One thing you stated was that your mum would have to go into a home, if you were unable to care for her. Would that be such a terrible thing? For her sake, as much as yours? You are such a loving caring person; looking after others is what you do. But are you using them to shield you from making this decision? What would you do if there was no one else to consider? Whichever decision you make brings risks, but making a decision will bring some kind of peace. Keep posting. It helps to clarify your thoughts, as well as gaining the perspective of others. Love Ju Ju xx
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Thanks for your understanding ladies. I'm very conscious of the fact I am lucky to have a choice over surgery but it makes it so hard.
CLKD - I last saw my surgeons in March - they said I could leave it for now and they will see me in December unless I can't cope with things. I thik my problem is I don't think i would recover so it's like having an op that will make me ill. Taz - they won't just take ovary as every time a&e of us are opened up its risky plus both ovaries have cysts it's just that they know one is an endometrioma which is ok - the other one they are not sure although onthe basis it's been there for years is unlikely to be nasty. But you know what surgeons are like - until it's out they won't comit. Yes silver lady on the days I'm tearing around the place and feeling good I think ' I can't do it as what if I died, had heart attack blood clot blah blah, my family couldn't even console themselves with ' she had no choice ' because I do. But on days when I feel dog tired in pain and generally worn out, I think ' let's just do this'.
hi Ju Ju - I'm more realistic about my mother now and finding it easier to say no and set boundaries although the situation still winds me up! My mother is only 75 so I have to move on as she could live for 20 years! By which time my life will be over - I am the one who has always been ill - her general health was great until the brain haemorrhage. Plus as you say I think a home temporarily would be ok for her as she gets extremely bored. If there was no one else to consider well I still don't know - somedays I am well and happy and me and hubby are having a laugh - we look at each other and I know he is thinking - don't do it. But the feelings don't last.
But I do need to make a decision as I am driving myself and my husband slowly insane :(
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What does your husband suggest? I think you should bring the appt. forwards, talking through again will clear your head a bit. Talk to the Surgeon about the wedding etc.; if you have to undergo emergency surgery your body will be more shocked, worst scenario you may still not survive …….. however, if you talk to the family about your dilemma, what would they suggest? You DESERVE the best health that you can get; none of us feels on top of the World every day but with your background, plus the bad times you had with recovery - if it were me I would go for it!
You may find that your Mum accepts a new 'home' and enjoys having others around. If you have an emergency she won't have much choice ……….
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Your feelings are in response to your thoughts. Fear of the future? Fear of pain? Fear of dying? It is easier when you have no choice, then you are swept along by events and just have to get through it. Having a choice, particularly as you are feeling relatively ok at the moment, is so difficult. Do you discuss how you feel with your husband? What are his thoughts? Does he come to appointments with you, so he has the full picture and has the opportunity to ask his own questions? I know he can't make the decision for you, but he might be able to allay periphery fears. Ju Ju xx
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Hi groundhog - I can't really help with your dilemma and decision but just to give you a :hug:
Hurdity xx
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Yes CLKD - emergency surgery is the last thing I need.
There are 2 surgeons - one bowel and gynae but they sort of agree that I need surgery. One is Chinese, very straight and to the point. The other one is rather dishy and really understanding. My husband does come with me and he is as unsure as I am. But he is obviously more rational and reassures me about my worst fears. It would affect him too as it will be a long recovery and goodness know what I will be like post surgery - I could be great as ATM I have a piece of diseased bowel that is ulcerated and horrid which must be dragging me down. But I could be worse.
Ladies - thank you for allowing me to unload all of this. I don't think there is an answer as even if one of you lovely ladies had had the same op the outcome could be different. I am a member of the Ileostomy forum and some people have the rectum removed and are back in work in 6 weeks - some you never hear from again!
Worrying and overthinking is exhausting isn't it. Thanks all xxxxx
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So get the wedding over with first - all the excitement will raise your adrenaline which may mean your brain and feelings will be clearer!
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Hello all - just bumping this up as decision has been made. I went to see the bowel surgeon last week as I feel this dilemma is doing my head in. I have become depressed and to be honest a horrible moany beast!! Not always, but at times. As you all know the situation is I need preventative surgery - I have longstanding chrons in my bottom which is at increased cancer risk plus I have long standing gynae probs which have left lots of scars and question marks as to what is going on inside. Every test I have results I questions and queries. I can't seem to live with the thought of doing nothing and hope nothing nasty develops but I am equally terrified of the surgery. But having spoken to the surgeon last week he feels I need to get this out - he said it may never become a serious problem but if it did, because of my history, they may not be able to remove it.
I'm only posting this now as the lovely Ju Ju mentioned it when I was banging on about my flaming table - have to pick kids up so will post more later, thanks for still listening ladies xxxx
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Peace of mind now you have made your decision?. I hope so. I'm sure it is the right thing to do. It's not not knowing which way to go that tears you apart. Love Ju Juxx
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So pleased that your Consultant has suggested what you really knew you ought to do. If he feels confident and of course, as a non emergency he will have more time to explore, investigate and perform what is required ………… how long do you need to wait for an appt.? Make a list of queries to take when you go for your pre-op check? You can also have a chat with the anaesthetist before surgery too - I wrote to the 1 before surgery and she rang me, twice so that we knew what my worries were.
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Hope you feel happier in yourself now the decision has been made.
Also, you will HAVE to take things more easily and not go running around after people.
Best let those affected know, they know who they are..............
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Oh don't let them know too early ;) or they might try to put doubts in your mind …….. tell them 2 days before …………..
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Just been reading this thread and I can see it has been a very difficult time trying to decide, as I think your previous operations were mostly emergency ones. Indecision and rumination is so draining and depressing. You may well recover more quickly this time as you will be more fit for surgery. Best wishes for the next few months.
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Sometimes we just need the medical profession to tell what to do for the best.
Groundhog - I'm pleased you have had help in making your decision and I hope you will now be able to be positive about having the operation and it will give you a new lease on life. DG xxxxxx
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Oh don't let them know too early ;) or they might try to put doubts in your mind …….. tell them 2 days before …………..
CLKD suspect you are correct - I hadn't thought of that
Groundhog - Do you want us to come and stick up for you when needed?
Failing that, we can send supportive thoughts if and when needed, just let us know.
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I no longer tell anyone if we have to go to Hospital until absolutely necessary. I would rather deal with our feelings and can't take on theirs as well …….. ;) also, what's it to do with anyone else other than OH/GP/Consultant?
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CLKD - Yes, but what if one needs help with pets, house, garden - whatever?
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Thank you all again for your responses.
yes I am ok with the decision but not sure about peace of mind -I'm still worried of course but it's more than that. I have moments I really believe I will die during surgery. I know that sounds dramatic but as I have said I have spent the last 20 years having conservative surgery for abdo problems as the consultant didn't want to operate on me 'as my insides are a dangerous mess '. He frightened me and the fear remains. So when I am feeling ok and think I'm just going to get this done and get in with my life, I'm fine. But other times im not. I don't have a choice though as it has made me quite ill with worry.
I am trying to be kind to myself and really must lose some weight. I have told some close family of my decision and I think they are just glad I've decided to have it. They are all very supportive and assure me they will cope ok. I've told my mothers social worker I will not be able to go to her house every night to give the sleeping tablet and we need an extra visit from the carers. I'm trying not too google the operation as there are some major horror stories out there. So I've got a few months yet before the event and I thank you again for your support xxx
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You've had lots of surgery with awful results but surgical intervention has improved over the years. I am sure if the Surgeon wasn't certain that you require this as a 'cold' patient rather than an emergency he would have suggested a wait and watch regime.
If you put all your paper work etc. in order it will be done. 1 less thing to worry about ;).
With regards pets etc., well how about asking neighbours? I had to as we live so far from family …….
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I'm not going to wish you luck yet as its far too soon.
Just wanted to send you. :foryou: and say that I think you are a very courageous lady. Enjoy the autumn and the festive season and look forward to peace of mind when this is all over.
Honeyb
x
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Thank you both for your replies. Yes I have had some bad experiences CLKD but I'm still here just about ! I used to think my last consultant was doing me a favour not doing the big surgery I have needed for so many years. Now I'm not so sure - my new surgeon suspects the last one operated on me and had a fright and didn't want to take the chance again, he should have referred me to a specialist centre years ago. He retired and left me with a big mess to deal with.
HB - thank you my lovely. I don't feel brave I can assure you - I feel scared and wrecked with anxiety some days as I look at my little nephews who I love so much. They asked me to be their granty as both their proper grans are very poorly and disabled. But I mustn't dwell on this or I will put it off again. The boys will be fine and will grow up with or without me, I know that. My life seems to be on a downward spiral and I have got to take control of something beofre it's too late.
Thanks again all xx
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Chin up girl. You will be there for those boys. Fitter and better than ever before.
No point in dwelling now....I suspect you really know you have made the right decision.
We are here for you to just get it off your chest and support you along the way.
Honeyb
x
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:thankyou: :thankyou: :thankyou: :thankyou: :thankyou:
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To me the definition of bravery is doing the things you are terrified of doing. Well GH, you are a heroine in my books! Well done and keep posting when you feel down and scared. Love Ju Ju xx
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Thank you Ju Ju :foryou:
I haven't done it yet :-\
I do have this vision of going to hospital - going through all the palava ( sorry is that a welsh word?? I mean hassle). Then in the middle of the night doing a runner off to sunnier climes ( Cardiff has an airport - passport will be taken ) :bouncing:
Only joking :(
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Hi ladies,
Hope you don't mind me bumping this up again. One or two of kindly commented on another thread ( My Mum ) so didn't want to hijack that!
Yes. I have had my date - 13/1/15. Very close. I have a pre op assessment on the 2/1/15. I don't know now I feel to be honest - still seems unreal. Maybe when I am in the hospital environment it will become more real. I am still struggling but trying not to go to the dark places I have been this year. My mother is a concern - She has been formally diagnosed with vascular dementia . I find it very hard to deal with and I know it's going to put more pressure on my sister and daughter when I'm not around. She has carers 4 times a day but on the days she is not taken out she stays in bed. She won't go to say centre or anything, maybe with me not being around she will get so fed up of being stuck at home she may at least try a day centre.
I'm very nervous about surgery - I don't know what life will be life without a womb ovaries and a bum! Atho none work ATM -( I have an Ileostomy and it's fine). I do worry about having ovaries out incase I become more depressed. My consultant did say tho that once these lesions are dealt with he will consider HRT if need be.
Thank you for listening again - any opinions welcome :) xx
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:bighug: I had a sudden flash back recently about the night prior to my first every surgical procedure. I wasn't scared, more resigned, the surgery was after all, my choice.
After that and several more I became quite blasé ::) …….. I was worried more about after surgery vomiting and whether or not my pain levels would be controlled. I wasn't and they were ;)
Take that list on the 2nd. Don't analyse your feelings. Until you get there you will swing from yep or not likely! These feelings are normal. I have sat by many patients as they prepare for surgery so you are not any different. The depth of your surgical intervention must not be dismissed. You trust your Surgeon? which is a whole part of recovery. He may not find the problems you are expecting once he is 'in' ;) …….. and he has your interests at heart.
Depression can be eased with medication. Talking therapy. Relaxation tapes. Fear of the unknown cannot be dismissed either! and will add to anxiety levels rising and falling.
Put your Mum's problems into the hands of the others. Tell your Sister that this is an important time for you, I am sure she already knows that but often people don't vocalise - they think that others know what they are thinking ::) ……. Now is the time when your sister will find out how much more support your Mum will require. Your sister is a big girl and can liaise with those people necessary.
It is your Mum's choice that she stays in bed - do you have evidence of this? Is it something she tells you ………. staying in bed is OK she probably sleeps, I'm sure she doesn't lay there thinking 'I'm all alone etc. etc. etc.' ' …….. so what, this is *your* time. Your Mum's problems are 'not your chicken, not your farm' ;) ……..
Try to do relaxation therapy several times a day. Put the focus onto you. 10 mins. every hour, sit, ponder, relax ……. your recovery will be easier if you begin therapy now.
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I still think you are very courageous. The concerns you have at the moment will be gone and you will be able to move forward confidently to a healthier future.
Maybe you should consider a nursing home for your mum. You are going to be recuperating for a while and not fit to do the things you do now.
You really need to think of you for perhaps the first time. Talk to your sister. Your mum would have 24/7care and stimulation and you could just visit and be a daughter again..
Keep posting. We are all here for you whenever you need us.
Honeyb
x
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Groundhog - Now you really have to look after yourself.
Your mum, sister and daughter will have to cope.
Please look after yourself.
Just seen Honeyb's post - she makes a lot of sense.
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Your Mum, sister and daughter will cope. End of. In your mind, maybe not - but in reality they will. I think that once you are in the swing of Hospital time, hospital food, visiting times your Mum's situation will be at the back of your mind : 1 soon gets institutionalised and Hospital time is so different ::).
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Yes I know you are right ladies. In a way I'm using the operwtion as a chance to escape - sounds crazy I know but within weeks of finishing work 2 years ago, I became primary care organiser. It's hard going especially as my mother is brain damaged / vascular dementia - not easy. She thought tonight I was my sisters cleaner and then phoned me as we were having dinner asking if I had made the babies bottles ( babies being my sisters children who are almost 6). She sees me as the fixer of everyone's problems but before the BH she was cold and distant. Sorry repeating myself.
Be so easy to stay as we are with me running around after everyone and getting more and more bitter and resentful. I know they wil all the fine.
CLKD - you asked how I know my mother stays in bed all day. Well we havea camera linked to my ipad - double edged sword. Great to make sure carer has arrived or when I need to phone her ( I can make sure she is in reaching distance of the phone). Not so good when I see her just lying there hour after hour waiting always waiting for me or anyone to take her out.
The camera will be disconnected when I have my op :)
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Please look into a care home for her. There would be no need for her to alone or stay in bed all day.
For her health and well being, and your state of mind.
My cousin always said she would not put her mum into a home unless dementia struck. It became too much to cope with and eventually she went into a really nice home. She really improved for a while as she had full time care which she really needed.
It sounds too much for you now and you have an operation to face.
I know it's difficult but it sounds as if your mum is getting worse. Would she really know where she is now ?
Honeyb
x
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Well that's an added problem in a way HB as she is not confused all of the time. So when social worker comes out and 'has a chat' she is perfectly lucid as whenshe is in company she is much better. The really crazy confusion only comes when she is on her own so it's a big pressure for me as I know if I don't take her out she is going to be worse. I do sometimes think she would be better in a home but she is having none of it. Where we live there is great emphasis on keeping people in their own home and she would have to be much worse before they could put pressure on her. This is why she now has 4 carers. I struggle as she is only 75 and I know if I took her out everyday she would be much better but I find it hard to take her out twice a week - after my surgery I won't be able to take her out at all for some considerable time.
Thanks for listening - I know you have your own issues and I am hoping you get good news tomorrow. We all have stuff going on and I would like to thank you all for listening and advising xx
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I know how you feel groundhog as my mum had vascular dementia too. I lived 150 miles away so only managed to be with her for half of the week splitting my time between home and her - my dad was still alive then but ill and very frail himself and was no match for her as she became more argumentative and aggressive. Neighbours were very good and rescued her on several occasions when she had got out without my dad noticing. Very difficult times for you.
Taz x
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:thankyou: Taz and eveyone :) xx
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Well done for being courageous and making the decision to look after you. Let others take over the situation with your mum. They will step up because there will be no choice. CLKD is right that when you get into hospital, you will be swept along and the outside world recedes for a while. Let others take care of you and go with the flow. I hope you look after yourself when you get home and follow medical advice. We will be thinking of you and sending love. Ju Ju xx
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Pity we don't live closer .......... ;)
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Yes, we'd all be checking up on you to make sure you're behaving yourself!
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..... we could visit your Mum to make sure she is OK which would put your mind at rest :)
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She'd probably behave for strangers! Like children!
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Probably ::)
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Aw thanks ladies - yes it would be great if we lived closer although not sure I would subject you to my mother! Shouldn't say that as I know she would love your company and a good old chat - that is what is so missing in her life.
I have had a lot of surgery but I'm not good being ill so I will listen as I wouldn't want to risk my recovery. My husband is taking sme time off for the first few weeks so sure it will be fine. I worry about bowel obstruction which can happen after abdo surgery especially when you have adhesions like I do. I'm trying not to go there tho and just hope it all goes ok. Got my pre op assessment on2/1/15 so providing that's ok it's all system go !
Thanks for your support ladies, it means a lot xxx
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Put that worry onto your list to take with you! Go through it with your Surgeon and team, they would prefer a more relaxed patient than one who isn't saying how they really feel!
:bighug: