I'm due to undergo open surgery for removal of extensive adhesions in 2 wks and been told I could end up with a fistula what does this mean?

I have undergone 20 yrs of various surgical procedures from appendix, ovaries, womb, cervix, cecum to a my complete large bowel being removed...I suffer with adhesion pain and often admitted to hospital with partial bowel obstruction.. I was discharged Thursday and am booked to undergo removal of adhesions in 2 wks...I am worried of the adverse effects of this operation and the impact it has on myself and my children whom are very worried.

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  • Hi don't be worried I had same op and suffered for years with the same problem .Having op has Changed my life completely .had op in Jan this year Christmas was the worst time of my life.Only people like your self could understand what it is like to have chronic invisible pain and along with it is depression .Ive just celebrated my 60th Birthday which at the time I thought I would never see.this year has been the best year ever pain FREE Best of look and please don't worry .Pat

  • Thankyou Pat for your reply and your very encouraging words. You've actually bought a tear to my eye as you've mirrored my feelings completely. It's wonderful to hear you've had success and to be pain free must feel like a breath of fresh air and new lease of life. I will hold on to that in the coming couple of weeks. Vickie

  • Hi Vichie you keep your chin up girl everything is going to be OK .keep me informed on how your getting on if you ever feel like a chat ill be more then happy to listen . Pat

  • Hi pat and thankyou. Can I ask what your recovery time was? My daughter is especially concerned as I've been in Hosp 7 times already this year and on 1 occasion I was overloaded with morphine and went into respiratory arrest and had a fit on being revived...seeing me in intensive care really scared her as I'm a single mum and other than her brother the only family she has x

  • God the same thing has happened to me in the past.you must make sure they have a high dependence bed ready before op for you .then you know someone will be close for the first night .since it happened to me I've always asked and gone on high dependence ward post op. Last year when I had adhesions removed I was very lucky to have found someone that really knew what he was doing Doc David Rowland in Murryfeild hospital . specialist in keyhole surgery I'd been opened up that many times in the past that was the problem .I was in theatre for over six hours .so this time my recovery was only a few weeks .if your not happy with your doc don't be afraid to ask for second opinion . Pat X

  • Its a scary experience isn't it and I hadn't undergone any surgery on that occasion I was being monitored and given analgesia for partial blockage ...I too have been opened up that many times over the past 13 yrs key hole surgery is no longer an options as can't see past the mass of adhesions..I'm seeing my surgeon next week so will defiantly mention my concerns post op...I've been quoted around 8 hours for procedure...I'm under Mr mark Mercer-Jones at Queen Elizabeth he's also drafting in outside help to perform the surgery as he did 2 yrs ago when removed my colon...thankyou pat it really does help talking to someone who has been there..I think a lot of people just think I'm a fussy eater and don't understand the pain associated with various foods..it's wonderful to hear your doing so well :-) x

  • can I ask what kind of pain / symptoms the adhesions cause? Can you get it from keyhole surgery too? I had a laparoscopy last year and about 3 months later developed aches and pains and am now wondering if it could be adhesions?

  • Hi the symptoms I get are crippling stomach pains like it's being torn and ripped out from the inside..abdomen becomes very swollen and hard in areas ..vomiting is another symptom..it leaves me unable to do anything at times...can I ask what the laparoscopy was for? Have you been back to your gp? Hope this helps and if I can help any further if be happy to chat. Vickie

  • Forgot to add I believe any surgery can cause adhesion but key hole has far less risk. V

  • Haven't been able to sleep without fitful nightmares surgery is Monday and feeling so isolated ...room of people but who really understands?!?

  • Hi I went through this surgery too in January after having awful problems with adhesions after bowel surgery, also a previous surgery to remove some adhesion bands.

    This last surgery was also open surgery, they said dense adhesions and like yourself would only consider open in future due to the amount of adhesions. It was scary, I know, for me I had another obstruction on the way to a wedding and had to go into A and E at the nearest hospital which was at Southport near Manchester. A bowel surgeon there did a CT scan then a 7 hour op on a Saturday afternoon to remove 1m of the small bowel, and he said after that he got all the adhesions.

    I am so grateful, after the op I was despairing, I thought things would get even worse as I'd done quite a bit of reading and it all seemed to say that adhesions come back in most cases. However I've been much better since. Prior to this I had a long while where could only really have fluids due to partial obstruction and was in a lot of pain.

    I was in hospital for about 5 days afterwards having IV antibiotics and I also needed to have 2 units of blood as had lost some during the op. I was in a normal ward. They wouldn't give me an epidural for the op (I think as there was a risk of me having infection in my tummy) and I had a PCA which was fine. I couldn't eat for several days afterwards and then gradually had things like soup. They asked me if I wanted to transfer back to my local hospital but actually I found that hospital better (small calm ward) so I asked to stay! Even though it is hundreds of miles from home which was a bit strange.

    I was quite tired after the op for several weeks but a week or so after was OK to be up and about. felt much better than before it though!

    I think a fistula is when two organs link togather for example the bowel and vagina and cause a passage to form between them. maybe you could ask the doctors if it's worrying you and how it would be found out. The other thing i've read about with adhesions can be a risk of injury to the bowel for example a perforation. But they should be looking out for things like that I'm sure.

    I hope it all goes well with your surgery. Maybe if you mention about the morphine reaction they could give you an epidural for pain relief instead? That might help.

  • Hi thanks for the advise much appreciated and I'm really glad your feeling the benefits of surgery. I am currently in Hosp after undergoing my operation Monday. I was given an epidural and sent to critical care post op for 3 days n now I'm back on a ward. Things are improving slowly and very painfully but I believe in the right direction. Take care V x

  • Hi again glad to hear the surgery went OK, I hope it continues well. I found it hard not being able to eat much after for a few days and was starving! Would you mind coming back on to say how it's going in the future months as I'm interested having gone through the same x

  • Hi I'm back home now was discharged on Mon so spent 7 days in Hosp. I'm still unable to eat, if I do I get very painful tummy pains and becomes distendend to the point feels could tear open and after going through all that i tend to vomit. I'm on 3 diff anti sickness tabs so just having to cope. How long did it take till you could tolerate food? Any advice you can give that helped you through the first weeks would be great fully appreciated x

  • Hi you poor thing- I was bloated up too after the op and still when they discharged me home from the hospital (it was when that huge snowstorm was arriving in January and they said didn't want me to get stuck there but I also know they were desperate for beds)

    They did some X-rays in the hospital and said it seemed like gas- you can also get something called ileus which is where the bowel takes a while to get started after the op. When i left the hospital I was only on a liquid diet, so things like clear soup...and had had the nasogastric tube in a couple of times with the bloating.

    You could get Ensure drinks on prescription or from Boots (but they are expensive so better ask for a prescription for a lot of them). Maybe you could keep them down and they are supposed to provide full nutritional support. Also it sounds like you could do with some pain relief. When I got home I just took things gently and with fluids for a while and thankfully the bloating subsided. If you think you are getting an obstruction though maybe you should go to the GPs or back to the hospital for some x rays. Hope it settled down soon x

  • Hi I ended up back in hospital, after 2 days of continuous vomiting I just wasn't tolerating diet or fluids so had no analgesia...been here 6 days and whilst I feel I've been to hell and back I'm pleased to now be on the mend ...I did in fact have a bowel obstruction and now have ileus so jus taking this slow...was able to try water yesterday and that went well and today I'm trying foods ...been over 3 weeks since I've had a proper meal so I'm very excited with a little apprehension thrown in...apparently in the last 3 days my liver is showing increasing problems through blood tests so now they need to do an ultrasound..my liver has always been very healthy so I'm not overly concerned ..it's been having to work in overdrive with all the iv meds I'm on so hoping it's just something simple.. Think I will try those drinks you mention as I've lost 10 kg since being in Hosp and I was only a size 8-10 to begin with so I'm a little boney lol it's great being able to get advice off you thanku as I think unless you've been through it you reslly cannot understand the pain n impact it has. All the best V x

  • Hi I was wondering if you might have had to go back in, glad it seems to be sorted and you seem to be on the mend. A couple of weeks before my last op (the big op like you just had) I had also had an obstruction and been in for ten days and felt very exhausted with all the pain, not eating etc and lost so much weight! Have gained it back since though unfortunately! It all felt neverending and I couldn't imagine getting out of having these ongoing problems, I'm still astonished when I get each month go by and it's still Ok - I can eat normally again now. I hope you get there too, little by little. It sounds like you are getting good support from the medical team. Hope the drinks help and things slowly return to normal. x

  • And yes I totally understand haven't met anyone in rl who has had this to that extent you and I have... also having children it is hard when have to go on being strong for them when it can make you feel very vulnerable and having to depend on the medical team... hope the liver problems sorts out and like you say it's just had to work so hard recently.

  • Hi I was just wondering how you are? Really hope it is getting better x

  • Hya nice to hear from you. How's things with you now? I'm kinda having a couple of good days and then I sort of plummet for a day and then back up again. I'm trying to eat more regularly and walk about quite a bit and I think I just maybe overdoing it and then I'm sick and in agony. Soon as it passes though I'm back eating and walking. So determined to get some normality in my life. I have to be reminded at times it's early days. I'm due repeat bloods nx wk for liver function and platelets so hopefully they've righted themselves x

  • Hi glad to hear you're ok- was thinking maybe back in again and hoping that hadn't been the case. Do you find they don't tell you much in the hospital e.g. no-one told me to take care with dietary fibre for bowel obstructions (alhough the surgeon did say something about being careful with nuts). It may help if you're in pain to follow a low fibre diet for a bit (just google 'low fibre diet for partial bowel obstruction') It is not the healthiest diet though but includes stuff like custard and chocolate and alcohol! For a while after my first surgery I was in such pain after eating (and they found at operation I had an adhesion band twisting up the small bowel ouch!- which they cut)

    Walking around is meant to help a bit I think (my husband kept getting me to do that).

    So glad to hear you've not got another obstruction and hopefully the liver stuff will sort out soon!

  • Hya, nope didn't get any advice other than not to continue Buscapan that I was prescribed 2 years ago whilst in hospital and given orally at home and IV in hospital each admission. Apparently I should never have been on it in the first place as caused my bowel to almost stop....prob could of saved myself some pain there. I asked about diet before leaving this time and only advice given was chew your food. Like I don't anyway! I chew to death to make it easier so that didn't help...I don't eat meat and stick to fish and quorn but I will defiantly look online at low fibre diet...I've wine in the fridge so I'll get straight on it haha I do eat quite a lot of nuts and pulses so I'll try a month without and see if that helps. Do you get much pain now? I'm supposed to be on tramadol and oramorph but I only take tramadol when can't cope as I'm just sleepy if take regular meds all the time. I think you'll agree bowel pain and operations are the worst pain ever!!! I've had 3 children with no pain relief so I understand pain!! Take care and thankyou x

  • Hi again sorry taken so long to reply, had a bit of a busy week last week... Yes it can be awful pain, I agree. Nowadays I get crampy pains lower back and lower abdo, only sometimes though and doesn't seem so related to being after eating. I take Amitryptiline for pain relief, the docs said things like Tramadol are not so good long term as can block you up a bit (I think) also be a bit addictive. My first op was a sigmoid colectomy and they said was loads of adhesions around where they did that op so think that might be why I get the pain in those areas- I guess some adhesions must reform. But, a year on, nearly, from the op for adhesions and there is a lot of improvement to how things were. How's it going now? Hope it is going ok. x

  • Hya nice to hear from you. Sounds all pretty positive now for you which much be a huge breath of fresh air. I've had my meds reviewed as I don't want to be taking such high dose opiates long term. Basically been told to always have them at hand just in case pain gets out of control. I went for my scan yesterday, totally assuming it was for my ovary as apparently its very enlarged, I'm ment to be referred to gynae oncology. Anyway get there and find it's my liver function that's got them worried as still hasn't regulated post op and on looking it's fine one side but an odd shape the other so more investigating needed. On a positive note though I've booked a hol for feb, figured be good to have something other than Hosp to look forward to :-) x

  • Hi again I'm sorry to hear about the recent problems, yes you definitely deserve a holiday! Hope the investigations turn out OK x

  • Hi

    I am thinking to have a surgery to remove the adhesion caused a severe PID incidence. The chronic pain really affects my daily life. It is hard for me to concentrate my job anymore. I am also concerned that surgery will bring more complications on me. How are you recovering now? Did the last surgery help you to relieve some pain or pain free? Would you mind to let me know ? Thanks.

  • Hi Everyone,

    I know its been a while since you posted to this site, but would anyone have an update on their situation?

    I had a neurostimulator inserted to help with pain, so my meds have been reduced.

    However, I also suffer from loss of power in my right leg due to the adhesions, along with migraines and fibromyalagia, so finding it difficult to do anything.

    I am only 36 and had to retire due to ill health in June 2014. Since before then, I have been stuck at home unable to drive my own car or travel very far on my own as I get very tired very easily.

    I am seriously thinking of getting the adhesions removed for good, but as I live in Ireland, I don't know or trust anyone to do the op right. I have no problem travelling out of Ireland or paying to go private.

    Any help with this would be greatly appreciated.

    Many Thanks,

    Siobhain

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