27 replies to this topic

[InvestigatorLG]

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Hello everybody

here are all the medical tests I have done and the results. Please share yours so we can compare and see what comes out.

 

Colonoscopy (2011) = No problem detected

 

Defecography Xray (2012) = mild recto-rectal intussuception

 

Pelvic floor Dynamic MRI (2014)= Mild rectal prolapse grade 1,  Anismus (pelvic floor dysnergia)

 

Anorectal manometry (2016) =  animus, long anal canal

 

2e Defecography Xray (Barium paste injected in the rectum) + barium drink for small intestine and intravenous coloration of the bladder  (2016)=  mild rectal intussuception (intra-rectal)

 

Sacral nerve stimulation test (2016)= No problem detected

 

Biofeedback therapy  (2016)= Improvement after couple of session, helps with incomplete evacuation but LG still there

 

 

Ok so what I suspect for now is the intussuception or the longer than normal anal canal. Please share your test results.

I will be able to talk about your results with my doctor. Especially the defecography and manometry... Thanks

 

TIP:  To have doctors take you seriously, my advice is to say that you have incomplete evacuation and gas incontinence. Mention those terms and they should start testing. If you mention odor etc they will most likely not take you seriously. Just a tip from experience

[InvestigatorLG]

Also found this old thread,  this is gold

 

http://www.ibsgroup....mus#entry875544

[oceanblue141]

Colonoscopy (2013) = No problem detected

 

MR Defecography (2013) = mild intra rectal mucosal prolapse

 

Pelvic floor Dynamic MRI(2013) = Pelvic decent of 3.6 cms

 

Anorectal manometry(2013)  =  Normal

 

Endoscopy(2013): Antral erosions in stomach

 

The colorectal surgeon said, this is insignificant...so not to worry and any surgery is not required.

 

\what i feel is this is due to stress, anxiety and tightness in gluteus, adductors, quads, hamstring group of muscles. Why am i saying this is when i was on antidepressants(Escitalopram oxolate and Levosulpiride) LG was almost 0. Do check for trigger points in your inner thighs, if any part is painful?

[Fromthegut]

got following tests done based on GI recommendation in 2016

 

• Blood tests -normal (ESR -normal) 
• Upper Endoscopy - No problem detected (Jan 2016) 
•  Colonoscopy - no problem detected (April 2016)
•  CT Scan of whole Abdomen - November 2016 Impression of CT scan by Colo-rectal surgeon -> Mild splenomegaly, mild crowning of bowel loops in central abdomen . (? related to adhesion)
•   MR defecogram ( November 2016) 

   MRI study of pelvis shows : Possible puborecctalis hypertonicity /Spastic perineum syndrome

 

Suggested Clinical correlation.

[InvestigatorLG]

Quick update on what's going on with my doctor appointments

 

So it's looking more and more as the pelvic floor dysnergia (anismus) may  be the responsible for the leaky gas

 

Biofeedback is helping but requires so much discipline and no stress. Next appointment will be hypnotherapy...

 

If that doesn't do the trick, they will do botox injection to relax the muscles. Things are looking better and better

[Vuvdeleg]

Hello 

 

Colonoscopy = Normal

 

MR Defecography = Mild rectal prolapse

 

Anorectal manometry(2013)  =  Normal,  but were present ultra-slow pressure waves.

 

Proctological visit = dyssynergia and second - degree internal hemorrhoids (cured)

 

I have also SIBO and I’ve an impaired sense of smell (I can’t smell leaky gas and certain things anymore).

 

In my case, leaky gas appeared the first time after I pushed too hard at toilet.

Now I generally feel a burning sensation when it happens. Sometimes I can feel urgency to pass gas and I can go to toilet but if I try to hold in gas leaky gas reappears.

 

I had already heard about feedback but the doctors that i've consulted never proposed it to me and the kits for anorectal biofeedback on sale online are too expensive. If your experience is positive i'll take it into account.

 

[oceanblue141]

Hi Investigator any news?

[MedStudSuf]

Hello,

 

Tests i have done:

 

1)Anorectal manometry:mild rectal hyposensitivity

2)Endoanal ultrasonography:internal anal sphincter thickness heterogeneity(different thickness in some parts of sphincter)

3)MRI defecography:Inability to push out more than 50% of gel inserted to rectum due to pelvic floor dysynergy

 

Solid stool continence is achieved mainly by puborectalis.

Liquid stool and gas continence is achieved mainly from internal anal sphincter tone.

 

In leaky gas problem is mainly gas and i think in some people maybe liquid that is volatile before noticing(wet anus)..

 

Based on this concepts the test that every leaky gas sufferer has to do is endoanal ultrasonography.

[InvestigatorLG]

Hi, here's an update on what's been happening with me

I did 6 session of biofeedback to cure the animus, I learned to relax a lot.

It helped with the incomplete evacuation but unfortunately it did not cure the leaky gas.  Maybe the animus was caused by the stress of leaking gas... just a thought.  PS I'm like 70% better in my animus tests, but still not 100%

I have been transfered to another colorectal surgeon to look at my mild rectal intussuception, also I have something that looks like prolapsed hemorrhoids that cause some clear blood when wiping sometime.

I will keep you posted on what the doctor will say when he will take a look at the MR defecography video.

I see him again at the end of December.

Also I will ask him if he can check if there is a fissure in the sphicter... if possible

[InvestigatorLG]

Hey everybody

Thanks for all of you puting your results in here. It will help us all in the end.

Update before the new year. I have been transfered to another top colo-rectal surgeon. I am now scheduled for surgery in couple of months. The surgery will be a suture Rectopexy without resection.  We are not sure that surgery will fix it but the surgeon says it's the first step to try at this point.  

i have done a lot of tests and biofeedback before getting to the surgery,  biofeedback is good and I would strongly suggest to anyone having incomplete evacuation to give it a try. It takes time and practice but it helps.  Now back to the suture rectopexy. My internal rectal intussuseption is mild.  Mild intussuception are common (30% of people may have it) and may not be a problem for most people. But in my case there are no other anomalies so the doctor decided to go a head with this surgery. I will keep you posted after the surgery with the real results. I will come back and give you guys updates. Will have to wait and see.
Give you more updates soon

Happy holidays everyone, keep the faith

 

Worst case senario if the rectopexy dont work I maybe will start considering a colostomy. There's new technologies coming for a bagless colostomy that seems pretty good. Life would be almost normal

 

http://ostomycure.com/ties-information

[InvestigatorLG]

After some thinking my guess would be that the reason we don't usually smell our leaky gas odor but other people around us find that odor so strong would be because the odor may be our fecal odor from feces in the colon which is the same as when you go poop in the toilet. The odor for you is not bad almost unnoticeable but for someone else its unbearable. Same when you go to a toilet after a stranger.

[InvestigatorLG]

MUST READ -- open rectopexy

 

 

  http://abdominalkey....open-rectopexy/

 

[InvestigatorLG]

After researching about suregery for prolapse, I realised that all the people that did the surgery did not cure there leaky gas and ended up in worst shape then before.

I will try to find a doctor that is specialist in Internal anal sphincter to see what going on there.

 

Look at this post I think this may be the key

 

http://www.ibsgroup....?hl=+leaky +gas

[InvestigatorLG]

Hi everybody,

(by the way IBsuck from cuzezone and WhereIbelong from ibsgroup is the same person. He had an OPEN suture Rectopexy that did not solve his problem, left him in the hospital for a week, 3 months of recovery at home and he ended up doing 8 more surgeries, from hemorroids to resections etc... all failed. He's now with a K-pouch and he's very happy with the life. No more odor, just need to empty the K-pouch couple of times a day)

 

Here's the latest update on my side. I decided to go for the surgery anyways to get things started. I'm one week out of surgery. I did laroscopic suture rectopexy, I was out of the hospital the same day. I was lucky to get a surgeon that considered this surgery as minor and did it like it was nothing. I mean the skills on this guys is unbelievable. The recovery was very easy. I'm almost all good

Its too soon to say for the leaky gas but things are looking good. Also from what I have learned is that the prolapse do tringer the internal sphincter so there's a strong chance that its related with the leaky gas.

At the moment I'm having more complete bowel movements and longer farts

But will keep you posted soon with the real results in couple of months for the leaky gas

[Reese016]

Hello InvestagorLG,

 

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 to the surgery??

[InvestigatorLG]

HI Reese016,

 

I understand what your going through.  First to be taken seriously you should only mention the incomplete evacuation and maybe the gas incontinence but focus mainly on the incomplete evacuation. Do NOT MENTION ANY ODOR.  Its sad but its the only way to be taken seriously

[InvestigatorLG]

It's official the surgery for my mild intussuception, laroscopic suture rectopexy did not solve the problem.

I am now considering to go for a COLOSTOMY.   I think the quality of life would be better than with leaky gas

[InvestigatorLG]

Results of the PELVIC FLOOR MRI

 

 

Pelvic floor anatomy

-Perineal body = unremarkable

 

-Urogenital diaphragm= normal on the right, thinned on the left with a 1cm tear

 

-Levator Ani:

  Ileococcygeus= Right is unremarkable, convex upward, no tear or atrophy ---- Left is unremarkable, convex upward, no tear or atrophy

  Pubococcygeus= Right is unremarkable, no tear or atrophy ---- Left have a significant atrophy

  Puborectalis= Right is unremarkable, no tear or atrophy ---- Left is slightly thinned without tear

 

-Internal sphincter= unremarkable

 

-Intersphincteric space= unremarkable

 

After that theres a bunch of angle numbers ...I will skip this part

 

-Prostate= unremarkable

 

-Bowel segments= unremarkable

 

-Bones= unremarkable

 

IMPRESSION:

1. Stage 1 rectal prolapse on both PCL and MCL criteria

2. Inadequate evacuation of rectum despite 5 or 6 attempts during two minutes. There is paradoxical decrease, albeit slight, in anorectal angle during evacuation. Finding may represent pelvic floor uncoordination (anismus) in the clinically appropriate setting.

 

 

 

*** Just to mention that the surgery for prolapse did not fix the problem, so now I'm thinking more and more about the Levator Ani muscles

 

 

If anyone else had a Pelvic Floor MRI, please post your detailed results!

 

Thanks

[Montesanto]

Hi All, 

 

what kind of specialist prescribed you Pelvic Floor MRI? I think this is an important factor for this problem because these muscles also are used for keeping the gas in, not only sphincters, and maybe when pelvic floor is weak the sphincters work too much and get damaged somehow?

 

I'm doing the pelic floor exercises but in fact I don't know if my problem is that these muscles are too loose or too tight, so the MRI should be done first. I'm also considering the antidepressants, I will soon need them anyway...

[Montesanto]

And did any of you have MRI of your spine? Do you have any problems with it?