rectopexy failed

Hi Karen Many thanks for responding to my query. I have had a long complex history of prolapse in all areas, i would say about 10 operations, some being the result of wrong diagnosis. Three fairly major operations all laparoscopic used with tape.

The rectopexy was done in 2014 by surgeon in Oxford, and for about two years i felt ok, then two more ops after that, one for bladder and another vaginal vault. All these were done in Oxford, some private some NHS.

Three weeks ago i had to have another protogram {hate those } still waiting for results. After reading your letter i am actually wondering if all these procedures work.

It is very uncomfortable living with this every day as you know. I also take 2 fibregel every day, i eat a very healthy diet and keep fit, bit frustrating really. I feel i can't give up, although am i looking for the impossible.

Hi Fiona,

sorry it's taken me so long to reply -- I had another surgery yesterday -- laparoscopic rectopexy with a dissolvable mesh insert -- no resection this time --  and so far feeling pretty good.  I've been going privately but any other surgeries will need to be under NHS as insurance not going to cover any more of these.  

Before this last procedure I had to see another consultant and she ordered a couple of tests -- an anal ultrasound and an anal physiology --  the ultrasound showed that my internal sphincter is damaged between 1 and 6 o'clock (as I had a partial sphincterotomy to treat an anal fissure in 1973 -- that's, unfortunately, what they did back then) and because of that not a lot of natural strength.   

The new consultant was quite blunt that she thought that I would eventually need a stoma (not too happy with that prospect but I guess it is good to be prepared as I hadn't even thought of those terems).  

However, after having the surgery with my usual surgeon yesterday I feel more optomistic and he actually seemed more optimistic as well as I had healed well after the last surgery.  And he felt that I could have a delormes procedure if the prolapse begins to sag a bit (which was out of the question before this past surgery).  So  a few more options.

I still need to continue physiotherapy at St Marks for about a year to help rebuild the pelvic floor to give me best advantage (even though the consultants didn't feel there was anything they could do for the internal sphincter they do feel there is great advantage into building up the other muscles).  I use a Kegal 8 (ultra 20) machine several times a week which seems quite effective in conjunction with general pelvic floor exercises.  

I also take the fybogel twice a day --it suits me pretty well and I will take it religiously at least for the next six months or so while the mesh is taking hold.

I hope you have good results with your problem --  It's frustrating but I am finding that it's nice to know that I'm not alone -- and I think there are lots of people out there with these type of problems who don't seek treatment.

Wishing you all the best, karen

Hi Karen,

I have been wondering how you were, i quess you are still in hospital, or maybe you are at home if all went well.

Excuse my ignorance but i dont really know about a dissolvable mess, how does that permantently hold things up. I also think that the consultant that told you that you would eventually need a stoma was being rather blunt, who knows with all the treatment and exercises you are now doing may help you. like me you sound a pretty determined lady.

I am interested in the Kegel 8 ulta 20 that you are going to use, i am going to research that, i'll try anything at the moment.

I have been waiting for my Protogram results at the moment, its been about 5 weeks, getting very annoyed with how long its taking, as i feel things have woresend, seem to have lost the urge to push number twos out, and no matter how and what ive tried my poo is hard and lumpy, resulted to lactulose yesterday but that really does give me wind.

I really do hope you feel better after this and feel more positive. 

Make sure you rest as i know after surgery you may feel well in yourself but inside it takes a while to recover.

Best wishes Fiona. x

Hi Fiona,  I sent a long reply but it is "waiting to be moderated" I think because I added some information a link about the Kegal 8 and also info on my consultant and St Mark's Hospital.  If it doesn't go through I'll try and cut and paste without the names.  

Also have you tried probiotics?  They often help the constipation problem.  I have used one recomended by the physio at St Mark's which one of the bowel neurosurgeons recommends which is a course for about one to two months only. 

Anyway, let's see if you get my last post.  

All the best,

Karen

So my last reply was deleted by a moderator I’m guessing because I had listed the name of my consultant and the name of the pelvic toner and probiotics I take.  I’m afraid I’m a little long winded so if you get bored reading this don’t worry, you won’t be the first to get bored with my notes, but I wanted to try and cover everything.

I was only in the hospital one night and got home yesterday.  I feel pretty good – I have 4 incisions in my belly but none too big and because they didn’t have to remove any bowel I’m feeling very good.

So, without names or places ….. 

DISSOLVABLE MESH:  So the dissolvable mesh is an interesting concept and a product that that my surgeon likes to use.  The mesh should dissolve in about six months by which time, hopefully, my body will build collagen and muscle around it to strengthen up the wall.  This mesh has less of a history of having damaging effects – the permanent meshes can infiltrate the bowel, bone and other organs which can mean very messy operations and probable stomas.  When my surgeon did the rectopexy on Tuesday he said that I actually healed very well since my last operation which gave him encouragement that I would also heal along the mesh.  He also said that everything was pretty tight up there and felt that I could have a top up less invasive delormes procedure if I have any recurrence (because of my very stretchy bowel).  … This is very reassuring because at my last consultation both consultants were out of options and felt that if the mesh didn’t work nothing would.

With that in mind – I need to really build up my pelvic floor and whatever muscles can be built up in that area.  …  I have been using the kegel exercises /pelvic floor toner for about 4 months ago and can even use it when I am doing housework (at first I thought this was a little weird but it is fine).   I bought this particular machine after reading reviews on a popular shopping website for all sorts of toners – I had, had a cheaper toner that was a few years old that I hadn’t used very much as it was uncomfortable, but when the physio thought it was a good idea to use a toner, I discovered it wasn’t working – so my search began for a replacement on shopping website.   Anyway, a reviewer for one of the less expensive toners (like my previous one) said that they weren’t happy with it and had previously used a kegal which they liked a lot and ultimately bought another kegal even though it was more expensive – so I looked it up on the web.  When I found which one was suitable I sent a note to the physio to see what she thought (as it was a little expensive) – and she said she really liked that brand and she knew how to program it.  I am very happy with it and find it comfortable to use.  

Anyway, this machine can be programmed (as the bowel physiotherapist has done for me) or there are a bunch of preset programs including ones for bowel problems and also urine probs.   Because I have the damaged sphincter muscle I won’t get brilliant results but the consultant feels that it is very important for me to build up all of the pelvic floor muscles as possible to help keep the prolapse from recurring.   It does take me 2 hours to get to St Marks for the physio and consultant (by train and tube) but I do trust them and feel it is worth the journey up there.  Now that my insurance won’t cover me for the bowel problems I will go through the NHS – and perhaps pay privately for some consultations if necessary although I found that the physiotherapist is very kind and not too worried about the insurance or private work.

The physio told me to use the pelvic toner 3 times a week with a program she input into the machine and to do 5 x 5 second sets of pelvic floor exercises 5 times a day.  Then, when I saw the 2nd consultant and she told me how bad my sphincter muscles were, I upped the toner to 2 times a day hoping to get everything working better (this seemed to help).  My surgeon actually insists that I continue going to the physio and keeping up with the exercises and he feels that this will help in the long run.  I understand from the physio that it can take up to a year to get maximum benefits so it’s still early days. 

CONSTIPATION ISSUES:   Have you tried any probiotic tablets?   A bowel neurosurgeon that the physiotherapist works for advises patients to take probiotics for a month or two.  I tried these and they have actually helped and do loosen up the bowels.  I took a brand that she recommended and bought through a common website.  (the brand has a yellow flower on the box – but I have used other probiotics that got good reviews and they seem similar in their effect). 

I wanted to add another little note about the BOWEL PHYSIOTHERAPIST as she is very kind and has been a great source of information about constipation, bowel control, building up muscles; she consults with bowel problems all day and works with bowel surgeons and neurosurgeons and I do seek out her advice.    I have some similar bowel issues (as you) which relate perhaps more to IBS (either constipation or the opposite end of the spectrum) that the physio had advised me about; because of the 45% damage to the internal sphincter I tend to go frequently during the day … and this can often be uncomfortable.   The physio has given me advice about using pessaries, movicol, in conjunction with loperamide to try and get me emptying my bowel and then having it be settled so I don’t have to go so frequently.   It didn’t work so well but I was glad I tried and that she had all kinds of ideas to help my problem. I have learned a lot about my condition by getting all of the tests done and seeing the different consultants and physiotherapist which I’m finding quite helpful in dealing with my situation.   If your consultant hasn’t recommended a physiotherapist who specializes in bowel problems I do recommend St Mark’s – check out their physiotherapy and biofeedback page.    

Anyway, I completely understand your aversion to lactulose --  I feel exactly the same – and now I’ve added movicol and pessaries to my unhappy list as they are so messy.  But, saying that, after using all of these things for a few weeks my symptoms did settle and now I just take the psyllium two or three times a day (branded fyb).  

OK so I’m hoping that this won’t be rejected and I didn’t forget anything.  This time I’m typing in word so I don’t lose my message.

Kind regards,

Karen x

Hi Karen,

It was a nice surprise to see a letter from you this afternoon, i would'nt dream of ignoring any part of your letter, after reading it i felt so much better and able to keep positive.

I spoke to my husband about the kegel 8 ultra 20 and after your recommendation and reading some reviews i will buy one this week.

You are very lucky to have found a great physiotherapist that cares about your particular problem, i need one of those, maybe when i receive the letter of protogram results it might be the next stage. {that will probably be Oxford ]. 

I am worried about the amount of permanent tape i have inside, its three lots now, wish i had know about the dissolvable one, why was'nt i offerd that in the begining?

My main issue at the moment is why my stools are small and hard even though i go every day or every other day, i drink lots of water and eat an almost veggetarian diet. I also tried 2/3 movicol a day, as well as prunes, prune juice apricots, all those things always use to work so something has changed, it seems to have done since my last bladder surgery in Feb this year. going to GP next week to ask, don't think i will get the answer i need though. Also having kifir in my diet its high in natural cultures, my sister insisted i tried a organic castor oil poulice to where at night, she is into natural well being at the moment since our dad passed away last October of colon cancer.

I will check out St Marks bio feedback page later, you are right about the amount you learn, i almost feel an expert on the subject, although wish it was a subject that was nicer.

 I really did appreciate your detailed letter its helped me lots, looking forward to receiveing my new kegel.

Hope you are feeling ok and resting lots.

Fiona x

Hi Fiona,

I was just concerned with your sudden change in bowel habbit -- with none of the meds working as before.  I'm wondering if you alert your gp to this and emphasize "sudden and drastic change" you can get the results you need more quickly.

I hope that you can get some answers.  I don't know a lot about the dissolvable mesh that was used for my surgery -- it was the first I had heard of it from the consultant.  I'm guessing it may not be helpful for different conditions.

Anyway do keep me posted.  Wishing you all the best.

Karen x

Hi

the rectopexy's are big operations.  The only thing I could think of is to try St Marks Hopsital to see if they can do anything for you -- they are a bowel specialty hospital.   (you can ask your gp to give you an nhs referral or go for a private consultation if that's in your budget)

Kind regards,

Karen

Kind regards

Karen

oh dear.  I do know that some of the scarring they can't fix -- that's why I was told I would probably end up with a stoma.  But I'm hoping I can hold out until some new surgeries come along.  Best of luck k

Hi Karen

I'm suffering dreadful quality of life since having ventral mesh rectory. Can't eat. Pain and constipation is dreadful.

In constant pain. Even affecting my walking. Have been told my pelvis veins dilated.

Prolapse failed ages ago but surgeon is ignoring me. Have you had mesh operation?