Intussception and rectocele

[christie63]

I am suffering from intussception and rectocele and have problems going to the toilet, has anyone else got a rectocele and what advice can you give about taking laxatives etc to go to the toilet it is very depressing.

[Hidden]

Ask to be referred to a continence nurse and investigate irrigation. Sounds awful but it takes the straining out of it all. Even after surgery for both these things I use it if I get constipated as I don't want to strain and cause the same problem again, plus it causes me pudendal nerve pain when my rectum is full. Hope it helps.

[anne77]

I have a moderately prolapsed rectocele, and I take Colace (stool softener) and Miralax as needed. I am considering having a rectocele repair (surgery).

[Mary-intussuception]

Hi Christie

IT IS very depressing and exhausting. I remember almost passing out on loo sometimes and having to go for lie down to recover. The pain some times felt like I'd been kicked by a horse.

As I mentioned in my pm, the hospital didn't do anything for me either.

Am I correct in assuming you saw the Colorectal Surgeon and he/she sent you for a Defecating Proctogram? Did you have any other investigations - Barium Enema xray? Blood tests?

I had all these in 2008. After he examinined me (through endoscope) Colorectal surgeon said ' You need a Proctogram. I think you have a prolapse but that's not my department' !!! He should have referred me to Gynaecologist but he didn't.

I Had really bad experience in 2nd clinic appointment. Long story. Wasn't told of my results for almost a year. Only when I got copy of my Hospital records did I see all results. I have:

Large Anterior Rectocele; Full Thickness Intra-rectal Intussuception; Pelvic Floor failure; Obstructive Defecation; Prolapse; Fibroid.

Diverticular in all three sections of Colon; Fecal retention in the Caecum.

I also have throat, stomach & gall bladder conditions and have Hashimoto's Autoimmune Thyroiditis & Hypothyroidism. Arthritis and Lympthoedema.

I don't have normal bowel function. I have to apply pressure to the perineum to 'lift' it, take a breath and bear down.

I had to search the Internet which was how I found the Pelvic floor exercises. I know it's not easy or very pleasant. But when I can manage them the more I do the better I am. I also gave up caffeine and switched to decaf tea & coffee. Drinking water and eating fresh fruit helps me.

I have banana every morning and aim to eat an apple and pear. It really helps when I do. Also, the more I drink the easier it is to go.

I don't take laxatives because of my muscle weakness but the ones I would recommend ate Lactulose medicine and Fybogel sachets. But they need to be taken for a few days to see good effect & then regularly. If they work for you after a while you could stop the Lactulose and just take one Fybogel at night. Some other laxatives can cause dehydration so should only to be taken short term.

I'd rather not have surgery if it can be avoided. But no one offered anyway.

It is so wrong that the hospitals don't do more to help us. They should - but they don't.

I hope you will be feeling better soon.

XMary

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[christie63 in reply to Mary-intussuception]

Hi Mary, like you the hospital have not helped me with my prolapse so I am stuck with the laxatives if I don't take them I wont go basically so not got a choice, I am surprised that the hospital wont help us they should do more, I think I need an operation but they don't want to do it anyways, so they just leave you to get on with it its terrible really, that no help is offered, thanks for your post mary, I have switched to decaf tea to see if that helps and eating oranges every day too apart from that its fingers crossed that I go of course its not a normal bm comes out like porridge so have to try and live with it.

[christie63 in reply to Mary-intussuception]

Mary did you have to ask the hospital for your records as I am waiting for my results of the proctogram not until 8th may which seems a long time to wait, I think the hospital have messed me about a lot not giving me correct details and waiting for long periods to see someone its not on really is it. I think I should have been offered surgery but the consultant doesn't want to do it he says I could end up worse than I already am so not sure I have no choice though really cos he doesn't want to do it.

[Mary-intussuception]

Hi Christie, I do understand what you are going through as my experience in Colorectal department was a distressing ordeal to suffer too.

I had to apply to the Legal department in the hospital for copies of my records. They have a form you have to fill in. The rules back then were if you applied within 40 days of last being seen at the hospital you got them free of charge. Otherwise you had to send cheque for £50 with form. You have a right to ask for copies under the Data Protection Act. When you make a written application, they have to respond within a certain time limit (can't remember how long maybe 30 or 40 days).

So it will take a while. You could also ask your GP if they have any results in yet. When did you have Proctogram?

I waited 2 months after tests for my follow up appointment. Then the Doctor I saw in clinic was very nice but didn't have a clue. My results were not in my file.

Have you considered phoning the Continence Nurse / Adviser to ask if you can make a self referal? You can in my area in South Wales

Have you heard of The Bladder & Bowel Community tel: no: 01926 357220?

I'm so sorry about late reply. Not long seen your posts.

I will post more soon.

X

[christie63 in reply to Mary-intussuception]

Hi Mary not getting on too well with my constipation but would a colectral nurse help I am not sure I saw one before and she was not very good telling me to stop taking laxatives altogether but I cannot manage without them what other help could she offer me x

[christie63 in reply to Mary-intussuception]

Hello Mary just wondered how you are getting on my situation is still the same with not going to the toilet its such a worry it seems like there is not much help available at the hospital and the drs it is very disappointing

[Mary-intussuception in reply to christie63]

Hi Christie only just got your posts. I'm coping just now, but had to do extra pelvic floor exercises and drink lots water as didn't go yesterday.

The Colorectal nurse here was no help. Worse than that (long story).

That's why I suggested you try Continence Adviser /Nurse who is completely separate from Colorectal people. In fact ours was next to Maternity Dept.

Have you phoned Continence Nurse yet?

Did you phone Bladder & Bowel helpline number I gave you?

Have you phoned GP yet about porridge like stools?

X

Mary

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ps

I got your pm - was expecting to hear from you. But ONLY just been notified of your last two posts.

Xx

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[Mary-intussuception in reply to christie63]

Hi Christie

Just wondering how you are this morning. I haven't had bm yet and I'm not looking forward to the pain when I do go. I know we shouldn't delay. I don't usually as I know it's gets worse later.

The things we have to tolerate it's not right is it.

I really feel for you as you seem to be going through what I went through in 2008 & 2009 with Colorectal Department.

Will pm you later.

Thinking or you

XXXX Mary 🐥

[christie63 in reply to Mary-intussuception]

Hi Mary really disappointed with the Colorectal dept they have done very little to help apart from having the proctogram and still waiting for results have to wait 2 months to see someone and then what think they just leave you with no help, they have not offered me surgery for the rectocele which I think they should, the colorectal dept have done nothing to help me so far

[Mary-intussuception]

Christie about bm being like porridge, are they always like that? Have you told GP? Wondered if you'd thought of asking GP for referal to Gastroenterology?

X

Mary

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[Elaine59 in reply to Mary-intussuception]

I have been down this road. Now in my 5th year. I have rectal interssesseption, Rectocele and entrocele. I'm on my 4th colorectal consultant and have just paid privately £510 pounds for another opinion I. London.. Surgery is not an option as the success rate is so small. Also you can end up worse than you were. I have done everything the consultant has asked, as to be honest I was avoiding eating so I didn't gave to endure the discomfort. He also said not to take any kind if laxative, I take laxid o sachets. It makes the bowel become reliant and everything just forgets to work properly.. If anyone has a magic cure I'm in

[christie63 in reply to Elaine59]

Hi Elaine yes I am having a second opinion for my rectocele but they said they don't want to operate so that just leaves me back to square one I have to take laxatives every day to go otherwise you can get an impacted bowel so not in a good position with everything, I had a proctogram showed interssuception and trapping anteria rectocele not sure where I go from here

[Mary-intussuception in reply to christie63]

I got impacted Caecum (first section of large bowel) after taking laxatives one of the GPs gave me!

Can't remember name now Macrogol ?? or something like that. She said they'd act faster than Fybogels. They sure did. They pushed the more recently digested food quickly past the retained feces in Caecum. I wondered why I felt hungry and bloated at the same time!!

Safer to stick with orange flavour Fybogel and Lactulose medicine and drink lots of liquids.

X

ps but I don't use any now.

[Sheenahete51 in reply to Elaine59]

Hi Elaine 59 sorry to but in but I was taking all different laxatives just to go, as not going is worse. my doctor recently said to take 4 laxido sachets a day. He said it would not make my bowel reliant? I wonder what it does do

Regards Sheena

[christie63 in reply to Sheenahete51]

Hello Sheena, I am taking all kinds of different laxatives to go as you said not going is worse, I don't have a normal bm with the laxatives, I also take 3 laxido sachets a day sometimes 4 as a stool softener they don't help much in getting you to go though, I have a rectocele prolapse with intussception so things are difficult and they don't want to operate they didn't give me the reason why I have yet to ask them getting appointments is proving difficult and waiting times are 2 months minimium in London where are you?

[Sheenahete51 in reply to christie63]

I am in the Scottish Borders. I don't know what I have, I just know my life changed June 2014 when I felt this awful pressure in my rectum, and unable to sit down. I think the worst is not the fact life is not great now but the shock that doctors don't always fix you or even help you.

4 laxido every night and pregabalin has helped a bit, life is possible now. I am waiting to see a neurologist, I think it's a 8 week wait. This site is great to know I am not alone.

It must be helpful to at least know what you have, each week I think I have a different thing

[Mary-intussuception in reply to Sheenahete51]

Hi Sheena

I have just been looking through theses posts again.

It seems you've had this 3 years and not been diagnosed? Is that correct?

If so, would you consider asking GP for referal to Colorectal Consultant.

You should have investigations in Colorectal dept. and may be sent for:

Protorgram - A Consultant inserts a sort of paste into rectum (painless).

And you go into a screened area to use a commode. The Consultant leaves the room for the scan.

And/or

Barium Enema xrayAlso Blood tests and maybe other Endoscopes.

You have a right to ask for a diagnosis and prognosis.

You may not get much support from Colorectal Dept. after tests but at least if you know what yo've got you can research and do what is best for you.

My tips are drinking plenty of water. If you take anything I would stick to Fybogel orange sachets. I used to add a little fresh orange juice to stop them going thick before I drank them. I don't used any now though. Also cut down on caffeine as it is a fast acting diuretic and the bowels need plenty of water to function. Cut down on cheese, white bread. Eat High fibre diet etc. Plenty fruit. And, very important, do regular pelbvic floor exercises every day.

If you prefer you could ask to be referred to a Gynaecologist as it could be prolapse womb causing the pressure. Referal to either or both, pelvic floor exercises and extra fluids would be a good starting place.

Sorry to go on. I suffered many years. And would do anything to prevent others suffering like I did.

Also check out Bladder &Bowel Community website or phone their helpline 01926 357220 and ask for the phone no. and email address for the Continence Adviser / Nurse serving your area. Some of them take self referal so no need to go through GP. Others take GP referals only - but give quick appointments I believe. Any difficulties getting hold of Continence Nurse can be brought to attention of Bladder & Bowel helpline.

Hope this is of some help.X

Mary 🐥

[Sheenahete51 in reply to Mary-intussuception]

I like the idea of the colorectal referral.

The doctors keep telling me I have divirlicular disease. I have had a MRI which showed nothing. After asking Any only wear and tearBut when I then say I have never had a sore tummy or diarrhoea. I have to strain to go no matter what. I asked him how many people with diverticulitis do you know who cannot sit down! He then agreed to my request to see i gynaecologist I was so desperate I asked to go private.

The private guy was great he listened, (so would I if I was 200 quid for half an hour) agreed than very doubtful diverticulosis then checked me out prescribed gabapentine instead of tramadol and got Physio organised(private) I thought I might have levator ani syndrome.(1 of my many guesses to what I have) I have to try and relax the pelvis. I do the exercises.

I have tried eating all fibre stuff plus fybogel, tried not eating, tried only oranges. I have tried everything. The pregablin is making me eat and I am so enjoying it as it's been missed.

I am rambling. My plan is neorologyst first but a bit worried about mentioning how I now have an ache in my V as well as my ass now incase I get dismissed to hunt. Then if that fails. I shall go for the bowel guy colorectal and see what happens then. I am confused as things do keep changing and I don't know if it is because I am 51 and it's woman's trouble or it's related to the Rectum trouble.

I am a mess mentally and can cry at the drop of a hat

[Mary-intussuception in reply to Sheenahete51]

Sheena, I think sometimes we need a good cry.

It IS POSSIBLE that you have a number of conditions. So yes, you could have Diverticular disease AND a Prolapsed womb. But as you say it is lower down than where the Diverticular are that you are having this trouble these past 3 years. As you say you are at the age for the Menopause which is enough to cope with. But you got to get the rectum trouble diagnosed. Gynaecologist and Colorectal should be able to help with this. I'm surprised the expensive Gynaecologist didn't give you diagnosis.

Please don't hesitate to tell any Consultant or Dr about the pain in the v as that will be significant and they have heard it all before. I have pain there sometimes after going to loo as my Rectocele pushes across into my v.

Do you leak a little urine when you cought, sneeze or laugh? I looked up Continence Nurse in Borders area the phone number is 01896 824555 you can phone 9am-4.30pm on Tuesday and make self referal to leave message for appointment with her. Google Continence Service - NHS Borders. nhs borders. Scottish. NHS. uk there is full information on there.

By the way - you are not rambling. You have been suffering terribly these past few years and should have been helped more, - much sooner. And should not have had to pay private.

I hope you are able to have a peaceful night with pain under control and a lovely weekend.

xxx Mary 🐥

[Mc89 in reply to christie63]

As Laxido is a stool softener it could be the cause of your "porridge" as you call it. I can't use it at all my colorectal consultant recommended Fybogel. This works much better for me although I'm not taking any laxatives at the moment as want to give my body the chance to work naturally (if it can). Too many laxatives work against each other & cancel each other out. A continence nurse could advise. We are all different & it can take some time to find the right balance.

[christie63 in reply to Elaine59]

Hi Elaine have you had any help from the consultants with your rectocele intersussception, I have had no help and having to cope on my own with it its disgraceful that the doctors don't want to help I don't know where to turn now

[Elaine59 in reply to christie63]

No love.. Just leaving everything, apparently it all has to be retrained! I wish sometimes that the consultants we see would have the pain and discomfort that basically controls your life everyday x

[christie63 in reply to Elaine59]

someone asked if anyone take profdophile for their rectocele and I have also been prescribed that (not sure if I spelled it right) its for chronic constipation it would not let me reply on the question so hopefully Gracie will see it

[Mary-intussuception]

Hi Elaine

Don't think there is a magic cure is there. And no quick fix.

I only got refered by my GP

(after going round them all & and taking their insults, getting upset, then bouncing back for battle)

when I told him- if you were outside our house when I'm on the toilet you'd think someone was having a baby.

I told him it's not just 'constipation' I'm on a high fibre diet. Doesn't matter what I eat I can't go normally.

He asked me if any bleeding so I said yes. Funny no one ever asked me that before. No GP had bothered to do rectal exam either.

I only got referal because of bleed to eliminate cancer. Colorectal people are too busy in our hospital to treat all cancer patients soon enough. So they don't treat benign conditions. You have to fend for yourself.

X

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[loadsofissues in reply to Mary-intussuception]

taking thier insults - me too - yesterday the Gp screamed my pain is all in my head and i cost them loads of money with different scans that showed nothing. she failed to read the proctogram which showed rectocele. I was slow as I should of screamed back at her it's not in my head it's in my arse!!! I will the next time I see her.

[christie63 in reply to loadsofissues]

I think its terrible the way some of us are treated by drs, because its not cancer they tend to leave you if you have a rectocele, I have a rectocele, endocele and a sigmoidocele as well as intussception but can get no help from anywhere its unbelievable

[Mary-intussuception]

Elaine just wondering would I be correct in assuming everyone on here has had Thyroid function blood tests. And have you seen copy of results with 'normal' ranges?

X🐥

[peters1]

I use a squatty potty and it helps me tremendously. I bought mine from Bed Bath and Beyond but sure you can order online. Hope is brings you relief. I also use a natural bowel detox to keep me regular from Nature's Sunshine.

[christie63]

Is natures sunshine a shop then what natural bowel detox do you take if you could give me the name of it maybe I can get some

[Mary-intussuception]

No (no and yes - long story will pm you sometime).

I have Hashimoto's Autoimmune Thyroiditis & Hypothyroidism. Was finally diagnosed and treatment (Levothyroxine) started in 2011. I suffered many years on & off with various symptoms, illnesses. I believe it is because of the long term chronic constipaton (largely due to untreated Underactive Thyroid) that I now have the Intussuception & Rectocele.

By the way, raised white blood cells indicates infection doesn't it.

Have you looked on Thyroid forum.

With Hashimoto's bloods results can fluctuate. Mine were Hypothyroid in 2008 but were overlooked. No one told me. These were noticed in 2010 and I was retested (I was feeling less unwell then). They came back normal (Euthyroid ). However I applied for copies of my hospital records. The normal results were borderline.

You can ask for details of your blood results but also ask for normal ranges in brackets.

If it were me I wouldn't bother screaming back at her. Not worth the effort.

Can you see a different GP.

I was left to research my conditions and manage myself. I got pelvic floor exercises from internet and do them all the time. Also healthy diet with lots water and avoiding caffeine, bread, cheese etc. We have to retrain the bowels and keep them moving! I don't use any laxatives. I have muscle weakness.

X

[Mary-intussuception]

Arthritis of the knees isn't confirmed in blood test I don't think. Not Osteoarthritis. Are you thinking of Rheumatoid Arthritis? Which one have you got? I have Arthritis in the front of my Right Kneecap. But that showed on MRI. There was nothing in bloods for that. Also in both hips, but again this doesn't show in bloods. I have very bad C-spine degeneration, again this doesn't show in bloods.

Please don't worry about white blood cells. Have you had recent sore throat?

You can ask for diagnoasis. Why don't you ask for phone call back from GP and ask why are your white blood cells raised?

Just keep calm and be extremely polite. You want full and correct information. That's what is important now.

X

[Mary-intussuception]

A stone in weight in one month is a concern to report to GP unless you were on a low-calorie reducing diet and trying to lose it.

So you have two things to ask GP.

Try to keep calm with them and ask specifically about the weight loss and raised white blood cells. Ask 'what is the diagnosis?'.

If you get better communication back this time then you could ask if you have had Thyroid blood tests. If not could you have them now?

Do you check your temperature regularly? As you know with infection you may get raised temperature. But did you know that with underactive Thyroid your body temperature can be slightly low?

Make a list of all your symptoms and look up Hashimoto's and Underactive Thyroid and Overactive Thyroid. Usually with Underactive people have unexplained weight gain.

X

[Mary-intussuception]

Not a very nice doctor then!

Have you considered applying for a copy of your hospital records so that you can see all your blood results in detail? When I got mine I didn't pay because I always applied within 40 days of last being seen.

You really need a sympathetic doctor who LISTENS to you.

Do you have intermittent claudication? Or is the circulation problem mainly in the toes & feet.

What have doctors said about abnormal folic acid?

You really need a diagnosis don't you? Should be under a Medical Consultant at the hospital and be given reasons for your weight loss and symptoms. If GP can't give you diagnosis and help then ask for urgent specialist appointment. X

[loadsofissues]

as for folic acid he said eat more greens but I eat loads so he gave me some folic acid pills and said my body is clearly not absorbing them.

I am getting no other joy from GPs and anything I say they just say well tell the specialist at the hospital when you get an appointment.

[Hidden]

A cervical screen is not a test for prolapse. It is a cancer screening test. A simple pelvic examination will detect prolapse.

[peters1]

purchase you a squatty potty it really helps...get on a herbal bowel detox daily.

[christie63 in reply to peters1]

what is a herbal bowel detox and where do you get it from never heard of it

[peters1]

Nature's Sunshine Brand "Bowel Detox"

[Lilsassyred]

I can so relate to everyone here. Lack of help/concern, confusion as to which specialist to see. I’m still struggling with all of this even one year after pelvic floor surgery which did not help at all. But the thing that has saved my life is my Biobidet bidet toilet seat. It has a vortex function (read enema) that gets in every nook and cranny and helps with that terrible miserable rectal pain and pressure. It’s the only thing in all of this that has brought me any relief. Get this ASAP! I’m still waiting for more appointments with other specialists and it’s taken over six months to get the first appointment. This has had an unbelievable impact on my lifestyle as I can see is true of most of us here.