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Rectal Intussusception Anyone?

Posted , 3 users are following.

reese08967
reese08967

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??

0 likes, 5 replies

5 Replies

  • karen01345
    karen01345 reese08967

    Posted

    Oh dear.   I live in the UK so we have the National Health service (we don't pay for treatment) so consultants will see you if your GP gives you a referral. I did have to insist to get a referral but other than that I have had a different experience in that the consultants were all very nice.

    However, said that, I have had one failed Delormes procedure and two failed resection rectopexies (done through the stomach) for anal prolapse.  I never had to do a defecography so not sure what that is -- I did have a colonoscopy and flouroscopic xray which showed I had a very loopy bowel.  Unfortunately my colon is very stretchy resulting in the two failed resection surgeries.

    I have to have some more test in a couple of weeks to see if there is anything else they can do.  

    Good luck -- hopefully there will be a breakthrough in this type of surgery in the near future /(although I guess it isn't a priority in the medical field lol)

     

    • reese08967
      reese08967 karen01345

      Posted

      Thank you so much for sharing your story Karen. I'm sorry that the surgeries mentioned wasn't a success.

      It truly bothers me how the medical industry is in the states. I truly HATE how I've been treated. It's weird how an Intuss is considered life threatening when kids get it...it's seen as an emergency and they have at leat 2 or maybe 3 alternatives to fix it.

      But when it comes to adults...there's pretty much NOTHING! I've joined quite a few online forums to learn more about this and it appears that more adults suffer from it than I realized. That's bittersweet. On one hand, I get to learn from them and on the other, it sucks how many lives this disorder is destroying....and lastlty...it sucks that there aren't more safer and direct ways to fix this...since so many have it! You'd thing specialist all over the world would see the need for this....other than discouraging a very risky and low success rate surgery.

    • karen01345
      karen01345 reese08967

      Posted

      Thanks -- I find the healthcare in the States quite frightening.  I am an American citizen and moved to UK about 28 years ago (I'm 60).  My husband and I would like to retire to the States but are very worried about the healthcare aspect.  Hope all works out for you.  

  • janet24959
    janet24959 reese08967

    Posted

    Dear Reese:  First of all, on reading your entry I am appalled by the treatment you have received.  Here in the UK we are lucky with the NHS.  In spite of all the problems they have had, medical care is pretty good.  I take it that Cigna is an insurance company specialising in health benefits?  You're certainly not getting value for money.  Isn't Obamacare supposed to cover all medical necessities? 

    I don't know enough about medical problems to advise you, but as you say you have suffered from constipation for 20 years, maybe a change of diet may benefit you, or has that been suggested already?  I'm sure you already have to follow a high fibre diet, with lots of fruit and vegetables. 

    I had never heard of a "rectal intuss" but if an operation can help, then go for it.  though I guess you're between a rock and hard place if the colorectal surgeon didn't recommend it.

    My own problem of double continence after an operation I had 11 years ago pales into insignificance.  Your only bright spot is your new baby.

    • reese08967
      reese08967 janet24959

      Posted

      Thank you Janet24959 for your understanding and compassion.  Yes, it truly is appalling!!

      It seems you ladies in the UK are having a better time of it than us Americans.  I might have to renew my passport and look into moving out there, seriously!  People risk their lives trying to come hear because they've bought into the "American Dream."..it's ALL rubbish!

      I'm in counseling and trying to figure this thing out.  I'm not giving up at all...just sucks that things have worked out this way.

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