Intussusception ANY ADULT WITH THIS POSSIBLE CONDITION

Hi I have recto-rectal insussuseption .have they said you will need surgery,?I have an appointment in two weeks to decide which opp to do ,they may do rectocele repair or one on the bowel

Hi Ella,

I have not been told yet that I will need a surgery.

what were your symptoms?

What tests did you have?

Have you had a CT scan or proctogram?

How did they access your Intussusception.

Did you have examination under anaesthetic? I have had some other unrelated problems which need to get better prior to any other investigations.  

Best Sandra

 

The test I had about 8 months ago was a proctogram this is how they found the problem I have incomplete bowel emptying which requires digital reduction of the rectocele in order to open bowels, I am under review under the two teams colorectal and urogynae as to what the problem might be, the colorectal team say the posterior repair would be the best corse of action, I want to know what will happen with the intussusception ,it would still be there It might help with the toilet problem but I have been told in the past the intussuseption will get worse ,

Hi Ella,

Hope you dont mind me asking but which hospital are you at if you are in UK?

Also if you dont mind me asking what is your approx age.

I am late 50s and I should have been doing these Sphincter Exercises a few years ago.

However was directed to Bio-feed my initiation and told this was of no use for me  UCLH.  However sphincter exercises which may or may not be part of bio-feed not quite sure should have been given to me a few years back at the hospital.  This may have salvaged my situation.

Were you given these exercises a few years back first or not. 

It looks good that they are looking at you with two teams which is good and actually talking to each other.

If you are in the UK I may need to change my hospital to get the best help. Which hopsital are you attached to?

I have had to struggle with opinions it has been a nightmare.

I also have incomplete bowel emptying however at present I am ok without digital help to open bowels, so I guess I may be salvageable.

I have prolapse in all 3 compartments, however do not have the usual prolapse discomfort you get at the end of the day with UTERINE prolapse, being the womb and bladder down. I have the lining of my bowel down and I guess all this is difficult to access.

I do hope some other ladies see my original posting as intussusception with adults I believe is not that common.

Hope all goes well with you Ella, please keep me informed.

Really difficult for me to exercise but I shall perservere for a while.

Ive only just started these very diffiuclt exercises as this obstruction in anus makes this very very difficult.

Best Sandra

Where about are you I could also give you a call

Hi i am in the north west of uk, i am early 50s, 2 and a half years i have had this problem, i had the bio-feed it didnt help then they sent me for proctogram then they found the problem. i read something if i could find out how to put it on i would, this is apparantly rear in adults but is says that alot of people walking around thinking they have IBS that infact they have an intussuseption and dont know, i had a colonoscopy and it was not picked up with that only when i had proctogram was it found, where abouts are you ?

Ella,

I live near Watford Herts.

Would be happy to meet up.

Are you anywhere near?

I don't want to put a phone number on the posting site.

Could you answer these questions for me relevant to your symptoms. This should help me understand if my problem is similar to yours.

Thank you.

Firstly is your main problem a feeling as though you have a flannel stuck in your anus from the moment you wake till you go to bed. Not just when you need to empty your bowels..

1). Do you wake early morning with a need to empty your bowels in conjunction with loads of gas. Or may be wake during the night.

2). Is your problem noticeable from the moment you wake in the morning.

3). Does a nights sleep lying on your back worsen your problem.

4). Most importantly is this problem discomfort in the anus as though there is an obstruction there 24/7.

Ella I may also have a trapped nerve in my bottom which may be initially caused from this prolapse. I wake with this discomfort made worse from lying on my back, having a nights sleep. I normally sleep on my back at night time.

4 years ago I noticed a pushing sensation whilst sleeping at night time was tested for worms. This would wake me in the night and give me faecal urgency to go to the toilet may be twice in the night. I have suffered with low back pain on waking for 10 years I assume this is from my lower discs. It has been chronic pain but eliviated once up and walking

I then asked to go to see a colorectal specialist UCLH.

Spent over 3 years there.

The colorectal doc thought this was more of a gynaecological prolapse problem. This was after proctogram MRI lying down showing prolapse in all 3 departments.

The gynaecological surgeon not convinced I had true uterine prolapse even though womb at entrance of vagina. I do not have a dragging prolapse discomfort at the end of the day.

I am not worse at end of day. I wake with anal discomfort.

So the gynaecologist thinks that I could have uterine prolapse surgery and could end up with a possible subsequent surgery for my anal end!!! This sounds a little like your situation I think.

Would be good to meet up for a chat. We could support one another better. I believe intussuscrption is a very rare condition in adults. You appear like me to have prolapse too.

Do you live anywhere near Watford Herts.

I am 10 mins from Watford by car.

We could meet up if you are near enough.

Sandra

Hi Sandra. I am in Chester very far from you ,I did think after I put about the phone it was not a good idea, all the questions you ask I will answer no as I don't have any of the problems ,my problem is only toilet area ,I do have a bad back but that has gone at the moment might be a few weeks then it comes back,I have a rectocele grade 1 that's normal after having children I have been told,but on my last appointment I was told I had a very inadequate pelvic floor so that's the reason they might do a rectocele repair the colorectal ,surgeon said this will help with the toilet issue when is your next appointment? You need sorting that sounds very bad to have to put up with , I hope you are sorted soon you have waited long enough

Hi Ella,

Would be nice to make contact to support each other.

Do you have an email address then we could exchabge phone numbers.

Sandra

Hi yes I do have a email but not sure about putting that on would you mind putting yours on thanks

Hi Ella,

Probably not the best of ideas exchanging emails on net.

If I could ask you a few more questions.

Thank you.

My obstruction feeling is a feeling of incomplete evacuation.

After a bowel movement I feel as though I still have something there.

There must be some trapping re this distal intussception, which I don't fully understand.

May be I need to learn how to manually evacuate properly.

I believe you do this. However no one has given me any instructions.

However this feeling of incomplete evacuation/ blockage remains all day not just after a motion, however just may be if I learn how to digitally evacuate I may feel better.

Ella I was discharged NHS from UCLH Hospital London for pain management on the colorectal side many months ago now.

I had to go and have another proctogram in sitting position privately which gave added info this distal intussception.

I have seen 3 colirectal specialists privately.

1). Banding of haemorrhoids was mentioned as a way forward.

2). HALO surgery was also offered by a specialist for haemorrhoids.

3). A stapled procedure was also offered for mucosal prolapse, (lining of bowel down.

I was getting different points of view which was making me think I need to wait and consider my options here.

I was having haemorrhoidal problems swollen veins, residue of skin tags also a thrombosing of a haemorrhoid, however no usual haemorrhoidal symptoms. No constipation, no continual bleeding, no itching. 

Have you had haemorrhoidal symptoms too?

In fact I had one episode of bleeding which led me to have a colonoscopy which was negative.

So I have been getting differences of opinions on the colorectal side and finally now have been offered investigation under anaesthetic and possible banding by one specialist. Or an investigation by another at same institution incorporating a diagnostic nerve block injection for a trapped nerve in the bottom. This nerve block injection is done as a blind procedure and I am 

worried to have this.

On the gynaecological side, I was told by one gynaecologist that he was not convinced that I had true uterine prolapse even though my vagina is at entrance of vagina and bladder well down because my symptoms are not worse at end of day which you apparently get with uterine prolapse. 

However uterine surgery has been advised by 2 gynaecologists and I am grateful one gynaecologist questioned my symptoms and was not convinced a uterine operation would infact help me. He is seeking the opinion of another gynaecologist at present.

So here I am and it's been a long haul but I am glad I haven't had any procedures advised as I could be in a worse state.

For the time being I will struggle with anal sphincter exercises and try to take my mind off all of this.  If I can strengthen the muscles I may be able to salvage all of this and prevent uncertain surgeries.

I have suffered for 3 years+ with an obstruction feeling in anus.

I wake early morning with this discomfort which is worse from lying on my back, especially worse when sitting and eliviated with standing but still there.

I do not suffer with constipation or bleeding.

In fact I have the opposite as my anal muscles are sometimes not able to keep control and I have the occasional accident. Hence I have a little stress incontenance especially in the morning with No 2.

I have uterine prolapse womb at entrance of vagina, bladder down and lining of bowel down (mucosal prolapse)

Gynaecological opinion is that I could have a prolapse surgery however this may not sort out my anal discomfort and I may need a subsequent surgery with my anal end.

After reading opinion re prolapse especially on this forum, it looks as though many ops are not sussessful.

Also I do not have prolapse pain or dragging at end of day so my symptoms do not fit with total prolapse issues.

Colorectal opinion had been confusing.

1.  HALO surgery recommended

2.  BANDING recommended

3.  STAPLED OP recommended

4.  Investigation under anaesthetic to access prolapse with possible banding.

5.  Pudendal nerve block done as a blind procedure to see what may be connected to a trapped nerve in bottom or prolapse.

6.  Biofeed to strengthen muscles with physio/nurse.

It would be a miracle if I could strengthen my muscles to prevent surgeries where there are no guarantees.

Again these prolapse surgeries appear to overlap.

Every specialist has there own expertise.

I am thinking that I may end up with a hysterectomy and then a ventral rectopexy. 

Ella please keep in contact.

Have you had haemorrhodial problems too in the past?

Good to keep in contact and I hope there may be other ladies out there with similar experiences.

Intussception is not common with adults and I do hope we both get some more feedback.

Good luck Ella with any procedures and please keep in contact.

Sandra

Hi Sandra

I have exactly the same symptoms and it drives me crazy. I am in New York but we could Facebook chat or call.

Cheers

SP

Hi Lady from New York.

Just seen this posting.

In a nut shell I have prolpase in all 3 compartments.

At least now I know exactly what is wrong with me as I have gone through the worst 3 years of my life not knowing what the problem was.

In fact I thought I had anal cancer.

Even went to the extremes of having a laparsocopy one year and half ago. Also 5 months ago a bone marrow biopsy thinking I had an anal cancer as one specialist told me all in the mind, he never even examined me.

To top it all this a nurse hit a nerve during this procedure which has put me back 5 months, or lets say I was in so much pain Meralgia Parasthetica - the worst paIn I have every expriendced in my life - all because nobody was able to tell me I have PROLAPSE. 

Just seen a good colorectal specilalist lets say an innovative specialist who has given me some hope .He is a colorectal specialist.

Look up Ventral rectopexy it is also a procedure done in the US.

If you still have your womb then this operation is done leaving the womb in place, or I guess lifting the womb in my case as it is at the entrance of my vagina. May be it can be done without the womb too.

This doctor I saw yesterday is the first doctor to metion Ventral rectopexy which in fact I had researched thnking that this is what I may need.

All I can say is that this operation has got better and better and I am assuming will be pefected to a better degree as the years progress.

I would love to make contact.

However I do not have a Facebook adress and giving info out on this site does not make sense.

Getting back to pudendal nerve related problems this doctor did not think I have this problem. 

I feel that I have found a good specilaist and I am assuming after the summer will go for a surgery.

The gynaecologist does not like the new future foward thinking colorecal specialist as they infringe on their terrritory.

The ventral rectopexy lifts up the bladder and bowel if you research, and in my case I will need the womb lifting too.

All I can say is if I leave all this I will get steadily worse and worse and worse.

The womb is good to keep if you still have it as it helps to support everything. Hence the gynaecologist does not like to be out of work with his hysterectomy does he!!

It is so diffiuclt to do pelvic floor exercises or anal sphincter exercises when you have a feeling of an obstruction in your anus.

It has been a long haul for me and a very long haul for many other women out there.

In fact for me it have been over a 5 year battle not knowing what was going on with my body.

Haemorrhoids, I guess or shall we say swollen veins in my case from prolapse which makes sense.

Banding will not help my continence and may make it all worse.

I realise this is the beginning for me.

This site helps men and women who are desperately needing a shoulder to lean on the added support the doctor is unable to give, especially here in the UK.

Surgery may not be the answer however I am beginning to think I may have to go down this route after the summer.

Good luck Milkshakes,

In all fairness the exercises may help you.

I am trying but after seeing this last specialist he does not believe in bio-feed well, this word has different conotations in every hopsital.

Ballon, pelvic floor exercises retraining the bowel what ever.

I beieve I may it have been possible to retrieve my situtation if I had  help 10 years ago. However if ones muscles are streteched from child birth, how  can one lift a womb bladder and lining of bowel with exercise! 

Heres hoping whoever reads this gets a little satisfaction.

And good luck to all the women out there.

Sandra

Hello,

This is a belated  message.

I realise u live in the States.

Just wondering where you are now with your intussusception etc.

Did you have a surgery?

We could make contact and give info by private message.

Do hope you receive this.

Hello Sandra

On the 1st of Aug I had a colon proctogram which showed a large enterocele and a moderate sized anterior rectocele. Then a few weeks ago I had an appointment with general surgery and they said I needed to go and see the Gynaecologist. She examined me and she said that I needed a CT scan. The Gynaecologist in her letter to me said "Despite the proctogram findings, I am afraid that I cannot detect an obvious enterocele." and she is sending me for a CT to see if I have Intussusception. This is what was first suggested I had when I had a colonoscopy, then had the proctogram and then the gynae appointment.

So I dont know what I have really at the moment as at first the colonoscopy reports was the first test and it said below,

The colonoscopy Report I was given after the procedure on 6 Feb 17 said

Perianal lesions: 3 haemorrhoids (2nd degree) and skin tag within

Diagnoses

Haemorrhoids and mild degree of rectoanal intussuseprion.

So have to wait and see what the CT scan says, but dont know how long to wait for that although the doctors said she would try to get soon, before my trip to see the surgeon in the UK mainland, that app is on the 13 Feb.  I live on the Isle of Man and sometimes we go to the UK mainland hospitals for tests as they dont do all over here.

We can chat privately if you wish, but dont sure how to use the private messages, you can send one to me and I will reply.

Bye for now.