Intussusception ANY ADULT WITH THIS POSSIBLE CONDITION
Posted , 16 users are following.
Has any one been diagnosed with the above complaint please.
What were your symptoms for this?
What tests did you have?
Sandra
0 likes, 57 replies
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Notes on Intussusception ANY ADULT WITH THIS POSSIBLE CONDITION
reese08967 sandra2468
Posted
HELP!!!
I'm very interested in your story. I live in the states (MO) and have had a HELL of a time trying to find a Doctor who will treat my Mild Rectal Intussusception. I'm 40 years old and I'd have medical problems since I was 9 year. I have several female dysfunctional disorders like PCOS, Endometriosis, Uterine Fibriods, Rectocele, Pelvic Floor Dysfunction. I have sciatica, bad back, spinal problems (subluxation) where the spine is misaligned near the waist/buttucks. I've had 2 colonoscopies (2008/2011) and they've both come out normal. I have small internal hemorrhoids...I had an in-office procedure to shrink them in 2011. I've had all kinds of surgeries/procedures to fix these problems and none really have helped my chronic constipation! I've had severe constipation for about 20 years. I've seen several GI doctors to treat it and was diagnosed with IBS during one of those times. I finally upgraded to a Colorectal Surgeon who diagnosed the Rectocele and Intuss by having that darn defecography. He repaired the rectocele in 2014 (i believe) but it came back in 2015. Sadly, I couldn't fix any problems at the time because I was pregnant.
Before I go on,...I must say that I'm unemployed...involuntary. I think it's also important to say that I'm a black woman...living in Missouri. I didn't decide to be a housewife...a set of unwanted and traumatic circumstances made the choice for me. Anyway...last year was a HORRIBLE year for me in a lot of ways yet HAPPY because of baby. I had a c-section/hysterectomy last Jan. I had my 2nd Rectocele repair a month or so after that.
I tried to save my husband from spending too much on health insurance so I had him drop me from his med. benefits and I got on Cigna. WORST MISTAKE!! I was on Cigna for like 4 or 5 months and the whole time I was a member...SUCKED! Their directory on who was in Network was often wrong...sending me to the wrong doctors who couldn't treat me. I drove 100 miles to see a doctor that CIGNA said was in network only to find out she wasn't. I caused a scene...a rep there called Cigna and told them the situation. After all that was said and done, Cigna wouldn't let me see the doctor. So I drove home empty handed. I filed a complaint against Cigna only to waste my time!
Throughout my membership with Cigna, i attempted to see several ColoRectal Surgeons who refused to see me! One doctor that I was "blessed" enough to see...was very rude. He told me that surgery for intussusception is "expensive, invasive and no one wants to touch it." As u can imagine, I filed a complaint against him as well. I was able to waive doctor fees. Most doctors didn't even explain why they wouldn't see me. I didn't immediately ask for surgery. I asked how they usually treated adults with this and they said surgery. I asked if they could help treat the problem and they refused. One doc was quoted as saying "oh she has a problem...i can't help!" I tried to fight the system by contacting several Local Reps and that proved to be a WASTE!
I finally got to see my main colorectal surgeon and he had me go a 2nd round with the defecography. That proved that I still had the Intuss. H recommended the Rectopexy surgery but I had no money...so it had to be put off.
I was able to see said doctor again this year...still have no money but the problem has gotten worse. At the time, I was experiencing right side pain. I didn't realize what was causing it till after my visit with him....I'll get to that later. I'd waited over a YEAR to see this guy only for him to say NO to surgery. He said the side pain was a concern and he didn't feel comfortable cutting on me...said it would probably make things worse. He said if it were just the "Intuss" he'd go ahead with surgery. Well, he LIED because when I called the office the next day...I got a surprise. He told one of the ladies there to tell me NOT to call again with the same symptoms... I'd asked if he'd consider surgery if the side pain wasn't an issue...she said NO.
The right side pain was due to too much caffeine intake...i no longer suffer from this.
My LAST hope was another Colorectal Surgeon. He did respect me and l greatly appreciated that. He put me on this fiber therapy regimen where I took Miralax/Metamucil together...2x a day. It did help some but more treatment is needed. He performed a Protogram on me and discovered the "intuss." He ordered another round of the dreaded defecography... The final conclusion was that the results for surgery isn't great so he didn't recommend it. I went through all of that humilation for nothing.
So my question is, How did you get a doctor to take you seriously and try surgery??
michelemdc reese08967
Posted
reese08967 michelemdc
Posted
Hello Michelemdc and ALL posters here,
Thanks for responding to my post. May I ask where you are from...US or another country?
As posted, I live in the state of MO, near St. Louis and I've been treated very badly by so-called Specialist in this area. It seems the general consensus is NOT to advise for surgery. They all recommend pelvic floor training (I've been doing Kegels on/off). However, that's NOT directly fixing the problem!!
What I don't understgand is...if this surgery is SO SCARY and like repeating Voldemort's name 3xs...then why haven't they come up with another way to treat this for adults? I'm sorry but I think it's unfair to tell ANY patient that the ONLY way to fix their problem is the exact surgery they are discouraging...and then not offer any effective alternative.
michelemdc reese08967
Posted
joannl reese08967
Posted
Hello, I live in St. Charles, MO. I've had hernia repair surgery using mesh in 2015, ever since I've had a major problem with constipation. I've done the fiber thing, stool softners, suppostories increased activity to no avail. I recently had a defecogram study showing an anterior rectocele and rectorectal intussusception upon defecation. I'm waiting for an appointment to discuss this. Please tell me what I can expect? Thanks
reese08967 joannl
Posted
Hello fellow Missourian!
I'm sorry for what you're going through. I believe your test results are the same as mine.
Unfortunately, I don't have any good news for you from my own experience with this condition. I've had an HORRIFIC time dealing with St. Louis Colorectal Surgeons. None of them are Pro surgery in my case. I've been treated like crap for a condition I didn't ask for. They say success rate is low YET it doesn't seem like they care enough for human life to come up with an alternative method to resolve this problem.
I hope you have better luck than I did. I'd stay clear of Wash U!
ann49251 sandra2468
Posted
My first consultants appointment was just with his registrar. I had lots of questions to ask so made a private appointment with the consultant. I feel much less anxious after seeing him.
He explained that it is intuss in the small bowel that is rare. Mine is in my large bowel. He is sending me to be given an irrigation kit to use to help to empty my bowel and I will try that for 6 months. If it works then he won't operate.
If it doesn't work I will need an operation which will be laparospic ventra rectopexy. This will correct the intuss and repair the rectocele. He does not use synthetic mesh and if anyone else needs this op then I would insist that you don't have synthetic mesh. My consultant uses pig mesh which is much more natural and does not give the complications that synthetic does.
ella19927 ann49251
Posted
Hi Ann I have the exact same problem as you, I am also using the irrigation kit at the moment, i have the option of an operation but i don't think I will risk it yet it is a big operation how are you getting on ? Ella
ann49251 ella19927
Posted
ella19927 ann49251
Posted
bianca42505 sandra2468
Posted
janec1970 bianca42505
Posted
no it can't
janec1970 sandra2468
Posted
Hi I am now 12 days post ventral mesh rectoplexy. My symptoms started after I had my son 9 years ago but I only plucked up the courage to go to the doctor 4 years ago.
It has taken this long on the NHS to get the surgery. I was troubled with external haemorroids - which have got much worse over the last 4 years, and a feeling that the right side of my anus was hanging lower than the left. The GP was baffled and sent me to see a colorectal surgeon. The first meeting was so awful that I refused to go back. My GP re referred me to Dr Venkat in Basingstoke who has a specialist interest in pelvic floor colorectal repairs. He's lovely. Initially they just thought i had severe haemorroids. I had anal rectal physiology tests which showed I had pendunal nerve damage and no ability to "push". I was given biofeedback training which was rediculous as I had been doing kegals for the previous 10 years and even the physio agreed it was a waiting list exercise as i had such poor control of my pelvic floor. In the mean time my symptoms were getting worse. Every time I went on a long haul flight I would get a thrombosed haemorroid. I had urinary frequency and urgency. I was unable to have a wee without having a poo and unable to have a poo without having a wee. I often would need to have a poo and simply nothing would happen. It was just like a closed door. I also had dreadful wind / flatus. I was unable to control it and farted constantly . It was awful, noisy and terribly embarressing. I was sent for a deficating proctogram. I was unable to poo but it did show a large rectocele. I was due to have a DGHAL in May last year. Under anesthetic they decided to stop the operation as the surgeon felt that I had a large prolapse (something which had not shown on shown on the proctogram). I then had a laparoscopy in December which confirmed the prolapse plus severe adhesions.
So I am at home recovering from the surgery. They have told me I will need 6 weeks off and no lifting for 3 months. After much research I had the artificial mesh. My rationale is that I only want the surgery done once as the pig's mesh will biodegrade. I dont want to be doing this again. I spoke to a number of surgeons from different hospitals all of whom recommended the non biological mesh.
So currently I have a UTI from the catheter but I am up and about. I only used laxatives for 2 days before being able to manage my bowels with diet. I have pain deep in my right buttock but generally after the first week I find I dont need pain killers. Priory to the surgery I was pooing 10+ times a day. Now it is twice a day. I dont have flatus /wind at all and if I do fart its quiet - its miraculous! I clearly still have the haemorroids. I was hoping they would operate on them at the same time. They do in some countries but here they will assess them in 6 months time as apparently 50% do disappear. I'm not hopeful but equally I dont think I will put myself through the haemorroid surgery unless the surgeon insists on it as my body has been put through enough. I am scared of future mesh erosion / migration. they put the risk at 3% but the problem is there are no long range studies past 10 years. At this point in time though I am pleased I have had the surgery done.
karen08997 janec1970
Posted
janec1970 karen08997
Posted
Hi Karen i'm now a year post surgery and can pretty much do anything (except I dont lift anything very heavy) . I poo and wee separately and only go once a day. To be honest I'm so glad i did it. The pain in my buttock was a locked facet joint from where they hung me upside down during the surgery. A quick trip to the chiropractor sorted that out immediately.
I then had further surgery for internal and external hemorrhoids,which were left afterwards and didnt resolve, unfortunately that did not go so well. I had a stroke during the surgery (I'm only 47) and the swelling and pain was dreadful. I'm now exactly 6 months post that surgery and everything has settled down but given my time again I would not have had that surgery but definitely the rectoplexy was the right thing to do. I would say find a surgeon who understands pelvic floors not just bowels. Interestingly I was in hospital recently with a lady who had had the rectoplexy using her own muscle rather than any form of mesh biological or artificial. Her repair only had lasted 6 months , she was devastated .
mary54335 janec1970
Posted
Hello all!!
To janec1970 glad you are doing well after your operation. I would like to say I'm so pleased that we find a voice to talk about this issue. I to have the condition described and I have been searching for a cure/treatment that is suitable for all woman.
For many months I have been online and have found the following that many on here may find useful.
(please read to the end)
Types of rectal prolapse
There are three types of rectal prolapse.
Full-thickness rectal prolapse is when part of the wall of your rectum sticks out through your anus. This is the most visible type of rectal prolapse and so is the type of prolapse patients most commonly see their doctor about.
Mucosal prolapse is when only the lining (mucosa) of your rectum sticks out through your anus.
Internal rectal prolapse is when your rectum folds in on itself but doesn't stick out through your anus. This is also known as an internal intussusception.
People of any age can get a rectal prolapse. However, it’s most common in women older than 60, and in young children under three.
Symptoms of rectal prolapse
If you have a rectal prolapse, you’re likely to notice a lump or swelling coming out of your anus. At first, you may only notice this when you have a bowel movement. But if your prolapse gets worse, this may also happen when you a cough, sneeze or stand up.
Other symptoms may include:
finding it difficult to control your bowel movements. You may find you’ve passed some faeces (motion) when you didn’t mean to
having some bright red blood or slimy mucus coming from your rectum
feeling some discomfort or pain
You may be able to push any lump or swelling back in by using your fingers. But this may become more difficult, and the lump may stick out again as soon as you push it back in. Eventually, you may not be able to push it back in at all. If you have an internal rectal prolapse you may feel as though you’re not fully emptying your bowels, rather than noticing a lump. See our previous section for a description of internal rectal prolapse.
If you think you may have a rectal prolapse, contact your GP.
Adults
To start with, your doctor may recommend that you treat any constipation. This means eating plenty of foods that contain fibre. High-fibre foods include fruit and vegetables, and wholegrain cereals. Laxatives that make your stools softer will help you empty your bowels without straining. You should also make sure you drink enough water. You can get a lot more information from our topic on constipation.
Your doctor can show you how to safely push your prolapse back in. They may recommend that you use barrier creams around your anus as the mucus from the prolapse can be irritating. They may also suggest specific exercises you can do to strengthen your pelvic floor muscles.
In adults, it’s unlikely that a rectal prolapse will go away on its own. If you have only a mucosal (lining) prolapse, your doctor may recommend treatment with sclerosant injections to stick the mucosa in place. Some adults with a rectal prolapse need surgery.
Surgical treatment
Surgery for adults
If your prolapse can't be pushed back and the blood supply has been cut off you will need emergency surgery. This involves removing the prolapse and part of the lower bowel (a rectosigmoidectomy).
A prolapse involving just the lining (mucosa) of the bowel is treated by removing the excess mucosa. This is basically identical to surgery for a pile (haemorrhoidectomy). Staples are sometimes used instead of conventional cutting with a scalpel.
Abdominal surgery involving opening the tummy. The basic procedure is called a rectopexy, which involves placing the lower part of the bowel (the rectum) back into its original position and fixing it so it doesn't slip down again. Various methods are used to prevent slippage, including sutures, staples, slings and shortening the stretched bowel. Surgeons are starting to use a laparoscope - a thin telescope with a light source - for some of these procedures. The instrument is passed through a small hole in the tummy, resulting in a smaller scar than you would get with conventional surgery.
Perineal procedures - these involve surgery in the area of the perineum which is located between the anus and testicles in men or the anus and lower part of the vagina in women. Variations include:
Circling the anus with wire (Thiersch's wiring procedure).
Stripping some of the lining of the bowel off the prolapse, bunching up the bowel muscles with stitches, then replacing the lining (Delorme's mucosal sleeve resection).
I have not had any of the above proceduresas yet but I am contemplating a procedure called THD with mucoplexy, this is Transanal haemorrhoid dearterialisation (THD),
This operation lifts up the bowel from the lower end. Wondering if anyone has heard anything from their Doctors and what they think about it.?
Thanks in advances.
Mary.
janec1970 karen08997
Posted
Hi Karen
sorry I have only just seen this. Hi so I am now 18 months post ventral mesh rectoplexy. I am absolutely great. My bowels only open once or twice a day and my urinary continence is much better. It absolutely was the right thing for me to do however there are some caveats.
So for me this was the right op by the right surgeon. I used Mr Venkat at Basingstoke. Hope this helps a little.
janec1970 mary54335
Posted
Hi Mary a THD is the same as a DGHAL which is what I had to manage my haemorroids. I had it done 6 months after my rectoplexy. I personally wouldnt do it again if I had my time over with. I found it incredibly painful and had a much longer recovery than I was expecting. Its difficult to know if it was a problem with the surgeon (not the same chap as I had for the rectoplexy) or if it is the procedure itself.
mary54335 janec1970
Posted
Hello janec1970,
Thank you for your reply,
Good to here that you are healing and doing well. You definately have made the right decision for yourself if you are feeling better. Concerning your toilet habits; were you advised to do any PF exercises by you doctor or nurse after your operation, guess it takes awhile for your body to 'relearn' how to 'go', seems to be more about adjusting than anything else, maybe things may settle down for you soon.
Have you changed your diet in anyway, after your recoplexy operation?
Also, yes i have heard that THD and DGHAL is the same surgical proceedure. But I believe the mucopexy is different 'as in' the prolapsed skin and mucosa is stitched back and pulled back up. So the mucosa and any extra skin just looks normal because its pulled back up. I'm thinking about having this done.
Thank you again for your reply and great recovery!!
janec1970 mary54335
Posted
Hi Mary54335 no there was no point in me doing any pelvic floor exercises as I have damage to my pudental nerve from a badly managed labour. Immediately after the surgery I had to squat over a potty as it was too painful to sit (that turned out to be a trapped facet joint from being hung upside down during the surgery!. After the DGHAL it ws so painful to have a poo I had to do it in a warm bath 😦
It is strange learning to wee and poo separately as for so many years I had to do the two together.
I've never been constipated (i just am unable to push - due to the nerve damage) so its very Pavlovean - in the morning - see toilet have a poo!. Immediately after the surgery I was paranoid about getting constipated so lived on kiwi and prunes!!!!!!!
My understanding is that during the rectoplexy everything is pulled up and back and stapled to your spine - least that's how it was explained to me. I had severe abdominal adhesions so it took a couple of hours to actually free my bowel in the first place. My backside is not pretty anymore and certainly does not look normal, apparently that's the loose skin from the internal and external haemorroids hanging out.
To be honest I found the whole experience humiliating and dehumanising. Everyone on the colorectal team was a man. It was awful however now I'm 18 months out the otherside I tend to talk a little about my "tail end " surgery a little with friends and colleagues. I have been amazed at how many women are suffering in silence about it all. Its shocking - an absolutely unspoken about epidemic. I know a number of women who have sought help after speaking to me but who felt too embarrassed before and were suffering alone. I knew in my heart of hearts I had to get this done before menopause to maximise my chances of healing. I am glad I did it. How long it will last before the mesh migrates is another matter but currently I think it was the right decision.
janec1970
Posted
Sorry Mary the other thing I would add if you are thinking of the surgery is get a surgeon who is interested in female anatomy! My surgeon did a post graduate in pelvic floor surgery and recognises that women would like to have a sex life after surgery. He works with the gyne team and stays well away from the vaginal wall - too many surgeons start stapling mesh to it which then erodes through the wall and you are into a whole world of new problems. His view is that the vaginal wall will thin once menopause starts so get things tucked up and away from there before if possible.