For people having an ileostomy or colostomy or living with a stoma. Support each...
A support group for patients with Lynch syndrome (also known as Hereditary Non-polyposis...
I'm told I'm healing well and Im slowly mobile and crucially alive but I feel so far from where I want to be and losing my enthusiasm.
That's good news that you're healing well, but it is a slow recovery process from the APR surgery. I don't think we give enough thought to just how major the surgery actually is. You're 4 weeks on from your operation, but you must see small differences today to what you were like right after your surgery? You'll soon be looking at getting behind the wheel of a car if you drive, and picking up light housework duties and lots of other things that you did before surgery. It does all take time, so try and be patient! Have you set yourself some goals to aim for over the next few months? That might give you something to work towards, and if you note it all down, when you look back, you'll see just how far you've come.
Hang in there... you'll get there!
I'd like to welcome you to the online community one of the few places where you can meet others who have had the same surgery as you, I know you don't want to be here but others being at the different stage of recovery to you they can answer nearly every question you have.
Can I ask where you think you should be regarding your recovery and what you think you should be able to do, providing you are mobile it's a matter of listening to your body and just try a little bit extra each day, setting yourself some goals as Linda suggested is an excellent idea but recovery is not a race, remember the tortoise and the hare.
What do think is making you lose your enthusiasm is it simply the lack of progress you think you're making or something else. Do you have a colostomy bag and if so how are you managing with it.
Rather than losing heart why not come back on and ask your fellow members about anything that's troubling you and we'll try and help you overcome the problems I am sure that at least one person will be able to share their experiences with you and hopefully put your mind at rest and give you the encouragement you think you need. No question is silly or stupid if its worrying you it's an important question that needs to be asked no one will judge you on anything you say.
Keep in touch, and keep us informed how you are getting along, you're part of our Mac family and we support each other, let's us know how we can help.
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You are perfectly correct in what you say about family and friends they tend to be supportive and a times say the right thing but at the end of the day you are the one living with it and unless you've been through this surgery you just don't know.
Many people after any type of surgery feel depressed and low for some time afterwards and this can amount to many months and this can result in changes in the way we feel and act talking to your doctor or your stoma nurse could help or just come on here for a chat or if you want to rant and rave and let off steam, talking with strangers can help and I'm hoping that we get a few more members join into this conversation who've had AP Resection and will be able to chat yo you first hand.
With regard to your genitals and urinary pain and altered sensation symptoms I would suggest that you talk these through with your doctor either GP or hospital or with your stoma care nurse she can give lots of advice and you should not be embarrassed about talking to her about anything but I think you should have these pains examined for peace of mind.
If it would help you can talk to one of our specialist nurses in confidence by phoning 0808 808 0000 anyway of the week between 9 am and 8 pm, they obviously won't be able to make a diagnosis on your pain but they should be able to explain why you are experiencing the pains in your genital area and urinary pain and altered sensation and give you advice which may reiterate what I've mentioned above about speaking to your own GP or hospital doctor knowing why you are experiencing these symptoms may help you. The calls free you have nothing to lose but a lot to gain by making the call, they nurses are all very friendly and give out lots of helpful advice.
With regard to your mental state do you think that you are feeling the way you are because you are not as fit as you were before surgery which I think is just that you body is still recovering from surgery causing the weakness and fatigue it really does take time and with some people it takes longer than others as we are all different, give it time you be back to normal soon and should be able to do the things that you enjoyed previously even competitive sports shouldn't be a problem to start again.
Did you know that in conjunction with the NHS sports centre in some areas have special reduced membership for recovering patients that allows them under the supervision of a personal trainer to help to build up your strength by using the gym equipment and with agreement from your doctor swimming it might be worth a call to your local sports centre and/or your local council to find out if the scheme is available in your area, you would need to have your application form signed by your GP.
Keep talking to us on here and I hope that more of our members will join into the conversation who have more knowledge than me on life after AP resection and be able to give you more information.
I had my surgery 7 years ago, and it sometimes is hard to get your head round the fact that one day you're fit, and then after surgery there's so much that you can't do and need others to help you with. Even ordinary every day tasks. Your fitness will return over time, have no doubt about that. After my surgery I found that I had a shortened concentration span, and on top of not being able to do a lot of things, it did get me down a bit. But again, over time, that all diminishes. Be determined that you're not going to be that grumpy old man.... yet! Be determined that you are going to get back to the fitness levels that you had pre-surgery.
Being a wummin, I can't really comment on your pains etc, but remember this - when the surgeons were operating on you, they would have been moving lots of your 'insides' around, so it might be that, but always better to speak to someone - your surgical team would probably be the best folks to ask. Don't suffer in silence.
I hope today's a better day for you and that you continue to make tiny but monumental steps on your recovery.
Hi I had Apr surgery August 2018 believe me at the time I felt I was never going to be normal again.
A year later I am back to my old self doing everything I done before.
Stoma has not stopped me doing anything I just done Europe's fastest longest zip wire.
Keep strong you can do this.
I agree write down goals you want to achieve just don't push yourself. This is your time to heal things do get so much better and easier
Look after yourself you will get there
That is really encouraging to hear you've come through this and back to yourself that you for the support.
Very early days indeed after such a massive operation! Your body is doing the equivalent of a marathon everyday repairing what it views as an internal car crash! It will sap your energy levels whilst it gets on with the job of healing itself. It will be several months before you are really getting back to normality.
I went through a much bigger operation than a basic APR called a Total Pelvic Externation. The APR was essentially a subset of my operation. 12 months down the line I am starting to feel normal again. I did have a few set backs with internal infections ( collections) which set me back a few months. Check what your CRP level is. If it is raised, you will certainly feel exhausted. It needs to be below 5 to be normal.
With time and all being well you should feel very strong and healthy again in a few weeks/months time. Take it easy and let your body heal itself.
Your operation was definitely more extensive so it's reassuring to hear your feeling more like yourself, thanks for the encouragement. I will get my CRP checked I suspect I do have a collection as there is a small amount of leakage from the perineal wound. What were they able to do about the collections, was it a case of antibiotics and wait or was it drained. Sorry more questions how long did it take you to be able to sit down and is sitting an ongoing challenge.
Another question is how long did you need morphine based painkillers, I still need some to get me through the day and I have tried to stop them but get so uncomfortable, my GP was hoping to stop them after 4 weeks.
They initially drained mine through a small hole in my abdomen after the operation. It was removed though before I was discharged 2 weeks after the operation.
When I went in again a few weeks later they used a catheter to drain off a massive amount but you won't have that option.
The last time it was drained a few weeks ago they inserted a pigtail drain through my buttocks under CT scan guidance.
Antibiotics were used to clear it up.
Regarding pain, I was very soon off the pain killers in the hospital. Not really taken any since. Sitting down comfortably takes a while. A reclining chair really helps!
You are just going to have to grin and bare it for a while.
Yes. At six months you’ll suddenly realise you are 80% back. The last 20% takes another six months I would say.
i am 18 months post op and back to where I was.
in fact I am not back to my fitness but I could be if I wanted. I have had realisations that my weight for the past five or so years has been artificial because my body has been busy fighting cancer.
i am three stone heavier than I was when I was fit :-)
its a standard reply, and frustrating, but time is the healer.
ise this time as an opportunity to introduce new techniques int whatever it is you sport-wise, because you must start very slowly and a new technique is perfect for this.
if it helps at at all I was able to run 5k at six weeks, it hurt but was doable. That was pre the three extra stone :-)
Wow 5k at 6 weeks, I could have tapped that out pre op but I can barely walk 150m to the corner shop without being wiped out. I've still got a a couple of weeks to go to 6 weeks so things will get better I'm sure. I'll post progress on here.
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