Hi ladies (or guys out there), I am wondering if any of you have any suggestions for things to do when recovering from this surgery? My wife is due to have the surgery soon and judging by the posts on here and from what I have heard, it can be a very tough and exhausting process. I would appreciate any suggestions for things to do or gifts that may help.
Also would any of you who have undergone the surgery have any tips and tricks to make the recovery less stressful in general? my wife had mentioned that some suggestions (possibly from this forum) included walking about and moving shoulders to help disperse the trapped gas, taking slippery elm pills and getting outside (even if only able to sit in the garden perhaps).
If anyone could suggest any other ideas, no matter how silly or insignificant they may be, I would be most grateful.
My darling wife has been through a lot and I would love this surgery to be the answer to our prayers, delivering her from the constant pain every day that is so unfairly robbing her of a life she (and indeed all of you) deserves.
Regards
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concernedhusband79
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My advice tips are based on the big hole op, but it is possible to have this procedure done by keyhole too in some cases in which case scale back everything I am advising here, because recovery is a lot quicker.
I found for the first 2-3 weeks after at laparotomy, using a c-section support belt was fab at supporting the lower tummy region when pottering about the house and I got mine from mothercare but they no longer sell the one i had. Boots the chemists do a very similar one for £12. buyable online only it comes in white or light skin tone colours.
There are lots of types listed on amazon and other websites. surgical support belts, pregnancy support belts, c-section belts or bands etc.
but anything along those lines, not too wide, but just enough to cover the laparotomy wound site if a bikini line cut is used. Some laparotomys are cut vertical from the belly button down to the bikini line in which case a wider band may provide better support.
at her pre-op appointment your wife could ask the staff nurse which type of hole direction this particular surgeon favours and armed with that information then order a support belt.
It is not essential but I found it very very helpful.
Also if you have a loo in a big enough bathroom, place a step ladder or sturdy chair next to the loo to help with getting on and off the loo. You tend to have too learn to use side muscles instead or in lieu of tummy muscle. ( a laparotomy cuts through 7 layers of muscle - all of which are needed for lots of movement you take for granted -including passing a bowel movement!!)
Have a rolled up bath towel left on the chair or step ladder which she can squish in to her tummy and curl over when bearing down for a bowel movement, also have a firm cushion by her bed or sofa which she can do the same when sneezing, coughing, laughing, hiccuping and all the other things we tend to do that strangely pull on tummy muscles that are no longer there to work.
All these activities hurt as they pull on the wound which takes a few months to heal and well over a year before full tummy muscle strength can be built up again.
She will need help with lifting bags, stretching up and down etc.
getting up will usually mean a bit of gymnastics tipping or rolling on to the side to try and get up. I found it very helpful when out shopping at the supermarket to use the trolley itself like a zimmer, leaning heavily on it.
Walking round a supermarket is exhausting and I found timing shopping trips to be late evening when far fewer shoppers about was by far the best way to negotiate the aisles with the trolley as support, and not waiting in long till queues, and do ask for help with reaching for things from shelves and also with packing bags and certainly with loading them in to the car. Most supermarkets have staff to help with these things and you normally politely decline such offers of assistance but believe me they are very helpful when the tummy has been traumatised.
Shopping trips should not be done unescorted for several weeks though.
Driving was tricky and i couldn't safely drive for 8-10 weeks, being rather stranded and relying on others for chauffeuring was a bit annoying.
There's lots of time to fill while stuck at home, craft kits like cross stitch take up a lot of time, but there are other projects to do, labelling photo albums, reading, watching DVDs, jigsaws etc.
I had a subscription to ancestry.com and spent a lot of hours researching my family tree which was interesting and took up a lot of time. it's about £18 a month, but certainly something along those lines is very good value for money when you have the time to dedicate to getting the most out of a month's subscription.
she may have other interests that she can pursue online too.
Before the op, i wish i had gone for a pedicure treatment on the feet, because it was a long time before I could bend down and look after my feet, so you could be very useful in providing foot care, or shaving legs (if you can bare to do such things.)
I did find there were things i could do, like washing dishes while sat on a bar stool for support, but standing for long periods of time was not great.... and hurt.
I am sure she will adapt to do lots of things, in time as the healing progresses, but it does take time, and on top of the lack of muscles and pain involved is exhaustion. every effort takes great effort, and stamina is not something in great supply.
Lots of rest required, lots of sitting down after any exertion.
walking a bit further each day is a great help. Escorted at 1st, but it won't be long before she can pop out on her own for a trip up the road and back. Traveling a bit further each day.
Moving essentials in the kitchen to waist height is a great idea, to save on bending down and stretching up. Same in the bathroom. Use a window sill to store cleaners that are normally tucked in a ground floor cupboard and as someone posted recently... do not lock the loo or bathroom doors in case of an emergency and she needs to call for help.
Ooo just remembered - slip-on shoes or slippers with a decent rubber grip.
Bending down for buckles and laces is a no can do situation.
firm gripping slippers or footwear can help you use thigh muscle strength to bear down for a bowel movement when the tummy muscles are not working. sounds odd but it's true. it's amaing what other muscles you have to try and use when the tummy ones are not working.
I know I am dwelling on the toilet activity, but that was the most demanding muscle activity in the day and by far the most painful thing to be doing each day. Trips to the loo were major exercises and always took several minutes of rest to recover from afterwards, and because you are having to visit the loo several times a day, this becomes a very big challenge and a palaver each time.
Having a thermos or secure liquids container to carry tea, coffee, soup etc from kitchen to lounge was very useful. The sudden twinges and cramps of the healing tummy can catch you out and almost wind you, and if you are carrying hot drinks then there is the possibility of spilling drinks in mugs and scalding, so having a safe way to move hot drinks about the house is a bonus. And a bottle of water by the bed or the sofa also helpful for topping up the liquids or with swallowing pain killers.
Wound care is another issue, if she is having a big hole op, the standard plaster sizes sold in chemists and supermarkets are not big enough. I had problems sourcing big enough plasters for my wound. At 1st the hosp gave me a couple large ones but they soon got used up. our GP surgery found my mum a couple more, but after they were used up, I found that it was best to buy smaller wound dressings and cut them in to strips and secure them over the wound with micropore tape (both of which are readily available in chemists and super markets). Having a long stripe wound is very tricky to cover up because you don't want the long plasters you cut to size as the adhesive is too strong and hurts to be removed each day for cleaning the wound.
Micropore is much more gentle to remove and is easily replaced.
antiseptic gel, creams, spray and wipes also very handy.
Most importantly time, she will need a long time of recovery, even when the pains of the op have eased off, there is still going to be a lot longer where muscle strength is missing or not reliable. It does get easier as time passes and it certainly shouldn't mean she spends her time bed bound, but in the first few weeks when the support belt is very useful, that's the really knackering time because there is a lot of pain and a lot of effort needed for everything - even turning over in bed is a rigmarole.
When awake it is best to keep pottering about the house frequently even though it hurts and even though everything takes a lot longer to get done being active is the best route to healing and keeping the other parts of the body in good working order.
with regards to driving, after 6 weeks if she feels ready to try, then drive her to a large empty car park and have a practice with driving, and more importantly reversing, and looking back over the shoulder. it's the twisting motion that tugs hardest on wounds and is the key to whether it is safe to b out on the roads or not. also reaching back for the seat belt hurts too. driving forward was fine, but the finer details of parking a car and reversing were the problem ones and getting into and out of the car with little tummy muscle support.
i am sure other ladies will have other ideas, but there's a few to be giving thought to and planning for in the event this is a big hole laparotomy operation rather than key hole.
I think reading the above doesn't give an accurate representation of recovery from TPPE / TPE. I am approx. 9 weeks post op from having had this procedure. There are only 2 surgeons in the UK who do this surgery (to my knowledge) and both are top experts both in endometriosis and also laparoscopic technique so It is extremely rare that this procedure would ever be done in any other way than keyhole so I don't think you need worry about many of the points above relating to having a laparotomy. Most ladies who I have spoken to have had an extremely quick and relatively pain free recovery following TPE compared to standard excision or ablation surgery so hopefully this will reassure you
You have picked up some good advice already – the trapped gas is painful and pacing around definitely helps. I bought a heat pad for £30 from Argos the day before my surgery and it was absolutely fantastic, you can just lay it around your shoulder and it really helps. I also found it comforting to lay across my stomach as my faithful hot water bottle would have been too heavy and solid.
Getting outside is great too. I found walking round the block great. You’ll find your own pace – nice and gentle to start and build it up. You’ll be advised to take it easy on yourself- laparoscopy means that you won’t have as much post op pain & recovery will be quicker on the outside than a laparotomy but you’ve still had a lot going on inside so I was still mindful not to expect too much of myself. Tried to avoid lifting or carrying if possible. I also had to take my time standing or sitting as everything felt 'vulnerable' and 'wobbly' inside for up to about 4 weeks post op.
They advised me not to drive for 2 weeks. I started with tiny little drives to the corner shop & back the first week of driving , then was driving up to 10 mins each way the second week of driving. I would get twinges after about a 10 minute drive but that soon settled and I was back commuting 50mins each way after about 6 weeks post op with no problems. But everyone is different so do what you feel is right for you.
I had surgical glue used on my incision sites rather than dressings but I still bought some dressings to have at home in case I needed them post op. I slept in the spare room for the first week as I was a little nervous about my hubby accidently hitting my stomach but that was possibly me being a bit too cautious as I’ve never heard anyone else saying they did that!
You ask about ways to make it less stressful so I would definitely recommend getting the cleaning & washing all done before surgery so that when you’re home you don’t have anything immediate to do. It’s also an idea to get everything that you may need at home accessible – avoid stretching up to top shelves in the kitchen for example. I went round each room and made sure that anything I might want was within easy reach etc. and that we were stocked up on essentials too. I made 2 lists, one for clothes and one for toiletries:
CLOTHES: big knickers, baggy nighties, loose tops, loose PJ bottoms, loose jogging bottoms for at home, zip up cardy ( with hood for if raining when leaving hospital) light rain coat ( again for if raining when leaving hospital). Slip on slippers for going to toilet in hospital & comfy shoes easy to put on for leaving and an easy to put on bra.
TOILETRIES /GENERAL STUFF: Selection of sanitary towels & baby wipes. Murray mints to suck if dry mouth post op or feeling nauseous. Micropore tape & mepore dressings, Paracetamol & ibuprofen in case needed. PILLOW for car journey home to cushion stomach on car journey home and when coughing or sneezing, Sick bags in case needed for car journey home (I didn’t need!). Magazines, books / kindle. Rich Tea biscuits in case nauscious in hospital before discharge.
I’d also recommend packing an overnight bag with a few nighties / pairs of knickers etc. in case you stay in hospital. They kept me in 3 nights rather than going home same day and we live 40 miles from the hospital where I had my surgery so I was glad that I was so organised.
My biggest top tip (apart from the heat pad from Argos!!) would be to try to avoid getting constipated. Pottering around and keeping mobile is important, as is drinking plenty of water ( helps avoid urine infections too), a good diet and taking a something like lactulose regularly. I declined the offer of Codeine in hospital as it can constipate and I was absolutely fine with Paracetamol to be honest. Resting your feet on a small box is apparently the position we should all be sitting in on the loo so you may want to look into that too.
It may sound weird but I actually enjoyed my recovery .Good luck for the op – hope everything goes smoothly
Laparotomy would not be planned by either surgeon unless it was a very exceptional circumstance or an emergency in theatre ( I've personally met with and discussed this with both the surgeons who do this proceedure and went on to have my TPE surgery with one of them on 04.04.14)
I haven't had this surgery as yet, but hoping to in the near future. The things I needed help with after surgery were sitting up in bed, my bf helped push me from my back (do not pull her as it will pull everything inside) so I could sit up and then helped move my legs from the bed to the floor very slowly and then helped me stand so I could go to the toilet. I think that is the best help she needs tbh and making her meals that are nutritious to help heal. Hope the surgery goes well for her x
I can second everything said by Petunia. I had this operation almost 4 years ago. To be honest it was much like recovery from any other lap except I felt extremely tired and just wanted to sleep but, they do like to get you up and walking about so there was no peace for the wicked as the saying goes - you would think that with the amount of work being done and length of surgery that recovery would be an awful lot worse. I did not find it so which was a pleasant surprise. I felt wiped out from the long anaesthetic and felt a bit woozy because of a low blood count but as soon as that got back up to speed I started to feel much better. Naturally there is soreness and I had a catheter for a week but it wasn't too much of a problem, in fact is was great not having to get out of bed in the night to visit the little room during those first few days! This was only because I had bladder work so it is not necessary as a matter of routine.
It certainly isn't a walk in the park but, I found it an easier recovery than a lap I had with a less experienced surgeon and where they had done an awful lot less work! To put it into perspective, because it is keyhole and not open surgery, despite the amount of work done, I found an emergency caesarean section to be a more difficult recovery as any movement and getting out of bed that first week was a trial. With TPE I was able to carefully get out of bed the next day without any great drama but was light headed and needed help for that reason.
As said above, the wounds on the outside are small and heal up fairly quickly but it will take quite a bit longer for the healing to carry on internally. They will provide effective painkillers in the first few days. Once I got home I dropped the coedine for the reasons stated above and I was able to manage adequately with paracetamol and nurofen.
Also, again as said above, with any laparoscopy no matter what you have had done, it is preventing constipation that is important, particularly after a longer anaesthetic. When I had my first lap with a general gynae, I was never told about this and I couldn't understand the awful pain I was in after about 4 or 5 days - thinking it was something to do with the op. It was merely constipation where the anaesthetic had slowed the system down, where I had been resting up a bit too much and not walking about to get things moving and with the coedine type drugs. Plenty of fluids, tinned apricots or prunes and lactulose made sure I did not get this for future ops.
All the advice above is sterling and definitely the pillow for the car journey home and baggier clothing. If it is any comfort to you, this operation was very successful for me and I have not had any signs of endo to-date. Your wife is very fortunate to be able to have this particular procedure and will be in the hands of a top skilled endo surgeon for this procedure.
Plenty of hugs will be needed and be prepared that one of the effects of a longer anaesthetic can be a bit of weepiness - partly also relief that it is done. I think I sat and cried for a couple of hours solid the next day and it wasn't because I was distressed - just seemed to be a reaction to the build up to it all, stress and turmoil of making decisions as to what to do and relief etc. I will always be totally grateful to the skill and dedication of the surgeon who carried out my op and hat he did for me.
I wish you all the best for the op and for the recovery period.
Wow some extremely helpful tips. Thanks so much. I will be sure to try to get on top of things so all is done a week before the op, hopefully leaving a little margin for unplanned eventualities. I am a little less anxious now I know recovery may take a little while less than was originally expected.
In your opinions how long did the recovery take from the day of the op til you felt confident enough to be left on your own?
I had been concerned the 1 and a half weeks I have available for annual leave would be insufficient but feel a little more confident hearing your positive outcomes. I know everyone's recovery will be different but it would be good to have a rough idea and also may help my wife have a positive overall view of recovery.
You all also have mentioned walking about in a good light so I can only assume walking about must be quite beneficial? Can you recommend any upper body exercises that help during recovery?
Again I thank you all for your suggestions and please do let me know if you think of anything else.
I just posted above but just wanted to point out my partner only had the surgery day and they day I was discharged off and that was it, I was fine on my own, he even had his dinner ready when he got home!
Don't worth too much about the horror stories, I'm always shocked about people taking 4 weeks off just for a 40 min diagnostic lap, I had 3 days off that's all I needed
It is an anxious time but I'm really glad that you are feeling a little less anxious now. My husband took 1 week off which was great. The main thing I needed him for was support getting in & out of the shower & cooking tea. I would have been ok if he'd have had to go back earlier but it was nice having the company too. When he went back to work i started showering in the evenings when he got home as i was still sleeping when he left in the mornings but it really wasn't long before i thought i'm ok to crack on on my own - just take a day at a time & don't rush. Walking is really encouraged after most operations to prevent DVT. My hubby usually tells me off for constantly 'pottering' but to be honest 'pottering' is good post lap to keep you mobile and going for walks round the block builds up your stamina gently. I was very tired post op like Stevieflp mentioned but I think a lot of the exhaustion is due to the extreme stress and pain & build up pre op - I felt like I was able to truely rest when I was recovering - the first chance I'd had in years so just go with it & listen to what your body is saying.It is important to drink plenty of fluids so to be honest I was regularly having to get up to wee - but that's good as it stops you from sitting / lying for long periods of time which isn't recommended. I never did any upper body exercises - In between toilet trips & walks round the block were spent properly resting ( watching a tv programme, reading or sleeping usually). It would be lovely if you could keep us updated how she gets on - whichever surgeon you're with you'll be in good hands. One final thought - I also booked into the hairdressers for my roots doing the day before my lap - again one less thing to do post op!
I didn't have TPE but I did have a lap with extensive work done. I would point out that we are all different and therefore recovery rates are different! My husband didn't take any days off work and I managed fine without him however some people might not advise being left alone. I was fine within a few days but my problem was excessive longterm fatigue so pay close attention to good nutrition in the months after and beyond.
Gas (harmless CO2) is used in the op to make the abdomen bigger and easier to work in. This gas can rise up the body and get trapped in the shoulders causing pain. Some people find that mint tea helps. I found it very effective. Makes the tummy look bulky, lopsided and unappealing especially with the stitches etc.!
Personally I didn't want to watch TV. I felt a bit too delicate for the brashness of it! I watched some great dvds instead or nowadays you can record things in advance.
Haven't read all the responses above but plan and try to cook as many meals in advance. I found a juicer or making smoothies was really helpful as the type of foods one normally eats are not so appealing after an op. Homemade soups are great too.
I don't feel that upper body exercises would be a good idea in the days following the op. Any stretching would impact the abdomen and it should be left well alone. Little walks every hour in the house are best at first. As mentioned, drinking fluids is important but also provides the opportunity to get moving to go for a wee. Gradually work up to longer walks in the days and weeks after. Walking is a really good exercise for 'massaging' the internal organs.
As Petunias mentions....I enjoyed my recovery! It can all sound very scary and operations should not be taken lightly but it's a great opportunity to be self indulgent! The body has an astonishing ability to heal itself so have faith in that.
I had extensive work done by laparoscopy and felt absolutely dreadful. I slept all the time and needed to take a good few weeks off work.
When I had my major surgery (which started out as keyhole but due to complications, they had to proceed to a laparotomy!) I wasn't feeling too bad at all. I went back to work within four weeks!
So you are absolutely spot on when you say we are all different and recover at different rates!
I don't know about you, but whatever surgery I have, It takes me a long time to get my energy levels up!
Yes, energy levels were a huge problem for me for over a year after but I had 3 laps in the space of six months which looking back probably wasn't such a great idea! The anaesthetic can take up to a year to get out of our system so our poor liver is probably overworked. I wish I'd had the wherewithal back then to eat a super healthy diet and cut down on alcohol!
It's so nice of you to post, I had TPE last year and a 6 hour lap, I stayed in hospital 2 nights then had 7 days at home then went back to work so luckily I wasn't too bad, the next day was agony though but only from the gas, I was shocked how much it could hurt, I had no pain from the surgery just my neck and shoulders, I made sure I went for a walk a couple of hours afterwards just for a potter around the grounds and I think it helped. They nurses gave me peppermint liquid to drink
The emotional support was huge for me as I knew I couldn't have children, it sounds like you will be a great support to her
Good luck
Hello.
I'm sorry if this has already been mentioned, but prior to any surgery, I drink a probiotic drink everyday and I continue with them after surgery.
Bowels can be slow to move.... And golden linseeds (2 tea spoons daily) certainly help me in that department!
As Lilly83 said I think it's really sensible not to listen to any horror stories you've heard or read. We all agree everyone's recovery is different but if you're having TPE then you are having surgery with 2 of the best endo specialist surgeons in the Uk and so there's no reason to think that your laparoscopy will need to turn into a laparotomy and your recovery will not go smoothly.You have obviously done your research to get you to this point - this is where all that pays off. No one can guarantee outcomes of surgery but going into it with a positive outlook helps greatly.
I couldn't agree with you more Barbara. The surgery that is available to most of us is just not good enough. It's enough for surgeons to get away with and earn a living in my view. I think it's all about skill level and how dedicated a surgeon really is to raising the bar.
There is one surgeon that I know of who does TPE on nhs. I'll PM you. x
I am day 15 post TPE. I have had more of a rocky road than you other ladies. I did have a huge part of my bladder excised though which might account for this. I also had ovarian suspension which was very uncomfortable.
In week one the worst parts for me have were related to pain with a full bladder, awful shoulder pain after my op (I got rushed back into hospital with my heart rate being 160bpm due to the pain)! Tramadol sorted that out! The surgery also sent my bowel to sleep for 6 days so I was very uncomfortable with constipation and wind. My GP had to prescribe me another mini bowel cleanse to sort it out. I still feel a bit upside down in that respects.
I have kept a pain diary so here it is. As the other ladies say everyone has different experiences! Sorry in advance but I am putting out a "too much information" warning about what I am about to post below!
My pain diary :
Permanent issues . Right side pelvis pain.
D1 initial urinary retention and right side kidney pain with full bladder. Retention resolved in middle of night. Pain scale 9.
D2 severe phrenic nerve pain radiating to shoulders. Pain scale 10+
D3 general gas discomfort relieved by passing wind. Good appetite. Still issues with urinating. Pain scale 3.
D4 general gas discomfort relieved by passing wind. Good appetite. Still issues with urinating. Vaginal blood tinged discharge. Pain scale 3.
D5 significant discomfort after eating. Sensation of being too full. Reduced flatus. Loss of appetite. Pelvic examination by GP prescribed movicol. Blood noted at right ovarian suspension site. Passed small bowel movement after evening meal. Still loss of appetite. Some discomfort with bladder. Shooting pain down legs and side. Pain scale 7.
D6 morning bm, appetite returning, laxatives continued, discomfort to right side pelvis radiating up to kidney and shooting pain in rectum after bm. Discomfort when lying flat in bed. Relieved after urinating. Pain scale 6.
D7 morning, lunch time bm, appetite good today, right side pelvic discomfort persists and radiates towards kidney. Lower back pain when leaning over..radiating up right flank. Pressure feeling in rectum/tailbone. Discomfort when sit to stand and walking in right hip. Still taking all prescribed pain meds. Pain scale 5.
D8 right side mid back pain in morning. Bladder discomfort and frequent urination. Prescribed cocodomol and this helped the pain. Pain scale 5
D9 increased gas pains. Right hip pain. Bowel incontinence. Foul smelling diarrhoea. Possibly related to antibiotics ? Discomfort after bowel movement. Pain scale 4
D10 more normal bowel movement in am. Stitches out. Right side ovarian stitch reported to have more tension than left side by practice nurse. Left side more painful to remove though. Sensations of wanting to pass a bm and urinate when pulling the right side. 2 hours later shooting pains up rectum and bright red blood from bottom. Tailbone pain. Pain scale 7 during stitch removal reducing to 5.
D11 more comfortable after stitch removal. Easier to bend over. Constipation. Still some discomfort. Noticed a slight ? Pressure in bottom when trying to pass a bm. Pain scale 4
D12 bm this morning with rectal pain. 1st day of no meds. Some sharp pains in bladder area on right front of pelvis. Urge to pass bm all day and feeling of pressure on tailbone. Pain scale 5.
D13 no meds today and feeling good! Seen my consultant who thinks all previous pains are probably normal recovery. pain scale 3
D14 bad day today. Feel like I might be ovulating from right side but it is causing a weird pulling sensation in my bowel. Very uncomfortable day and went to bed very early. Back on pain meds. Pain scale 6
Hiya I just wanted to say hi and that I hope your recovery starts to get a bit smoother for you. I'm glad you're now on something to help with your bowels - shame they didnt get you that prescribed earlier as it's definately needed. I was prescribed lactulose & made sure I drunk atleast 2 litres of water. Where did you have your surgery? Was it Manchester or Elland? Xx
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- you would think that with the amount of work being done and length of surgery that recovery would be an awful lot worse. I did not find it so which was a pleasant surprise. I felt wiped out from the long anaesthetic and felt a bit woozy because of a low blood count but as soon as that got back up to speed I started to feel much better. Naturally there is soreness and I had a catheter for a week but it wasn't too much of a problem, in fact is was great not having to get out of bed in the night to visit the little room during those first few days! This was only because I had bladder work so it is not necessary as a matter of routine.
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