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1704915 tn?1357601254

constipation, tortuous abnormally long colon, slow transit and anterior rectocele

I am 30 years old and have been suffering with GI problems for the last 6 years. They consists of terrible gas stomach aches, bloating (to the point I dont fit in my clothes and look pregnant), girggling/trapped air in my chest, chest pains and the worst of them all.. severe constipation (don't go for 2 weeks and when I do its rock hard and barely anything). I have seen 4 different doctors getting various opinions that range from a regular dr who put me on Amitiza low dose and when that didnt work recommended me to see a gi dr. That GI dr told me "oh its just IBS..nothing we can do for you." Then I went to the city to see a dr at a well known university hospital and they ran a million and one tests on me...........

1.) Sigmoidoscopy Result = hemmrhoids internal due to straining, some irritation and redness but biopsies say no cancer

2.) Upper scope = some irritation and redness but biopsies say no cancer

3.) Mannometry = lower esophagus is weak causing the trapped air and pains (taking Aciphex and Gas X for this, avoiding gas causing/acid causing foods)

4.) Empty Stomach Study = stomach is emptying in a normal range

5.) Physical Therapy for pelvic floor dysfunction = not the cause of constipation. When this did not work I begged my gi dr to do a colonoscopy to set my mind at ease.

6.) Colonoscopy = they found I have a very long and very torturous colon.. my GI dr was not able to complete the whole thing.. she got to my ascending colon and had to stop. She says surgery is not needed unless there was a knot or blockage (pretty much on my death bed) but this definitely is why I am experiencing gas, upset stomach and bloating. I begged her to give me something for some relief now that she knew this was the cause. She took me off of Miralax and put me on a high dose of Amitiza. This time I didnt stop taking it because it didnt do anything but because it made me VERY sick. I missed more work because the side effects made me feel as though I had the flu (aches, pains, chills, hot flashes, headaches). I took it as instructed with a meal to not get nauseated which does help... but when ever I finally have a BM I become nauseated before, during and after. I still didn't go to the bathroom for a week or two so the side effects were not worth the results. I was then taken off of of it and put back on Miralax.

7.) Barium enema xray =  because my colon is so long and loopy they had to fill me up with 3 bags of barium instead of 1 and had to flip me upside down for quite a long time to even get the test going. The results showed the same thing as the colonoscopy. Longest 2 hours of my life. Worse procedure EVER!

At this point the GI dr told me there was really nothing they could do for me but continue running more tests to eliminate other things. She continued to tell me that surgery was not an option even though my colon was so long, loopy and making my life miserable. I took it upon myself at this point to see the colon surgeon to see what he had to tell me etc as I kept reading and hearing about colectomy surgeries. The surgeon looked over all my files from all my various drs....

8.) Sitz Marker Xray = I have colonic inertia. My stomach and small intestine are working but my large intestine is not. I actually went to a colon surgeon after not getting any treatments answers from my GI dr.

The colon surgeon called and spoke with my GI dr whom I was trying not to go back to as I was done with getting no answers from her. He gave me the option to see a constipation specialist that she recommended at the hospital I had all the tests done at. The colon specialist told me I needed to have 2 procedures done to make sure my rectum and everything else was functioning before proceeding with surgery on my colon.

9.) anal manometry = pretty normal results. A little loss in sensitivity but nothing to be alarmed about

10.) barium defecography = shows that I have anterior rectocele which is causing a blockage

My GI dr/constipation specialist now want me to see another surgeon that they highly recommend that specialists in anterior rectoceles.

My question is .. is there anyone else out there that is experiencing anything similiar to what I am (constipation, tortuous abnormally long colon, slow transit and anterior rectocele)???

Has anyone seen a surgeon or had surgery to repair a anterior rectocele? What was the results?

49 Responses
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1704915 tn?1357601254
So today's appointment with the surgeon seemed like more of a waste of my time and money then anything else.. so much for waiting a couple of months in hope I was headed in the right direction for a change

1.) she is a colon and rectal surgeon who works in womans health and pelvic issues but she is not a urogynocologist!!! (and I already saw a colon and rectal surgeon so I am a bit upset the constipation specialist recommended I go to her for this) there fore I have to go back to see their Urogynocologist about the anterior rectocele. I made an appointment to see the one on May 23rd...So I really just went and saw a colon surgeon which I have already done. So no anterior rectocele surgery appointment set. Ugh.. more run around..

2.) she feels the anterior rectocele is not what is causing my 2 -3 week back ups of constipation and stomach aches etc... and feels my colon is to blame....there fore she does not agree with constipation specialist that sent me to her......she feels I have 2 completely different problems.. the colon being one problem which no one seems to know why and the anterior rectocele just being a completely second problem that I have.....she also seemed boggled on what was wrong with me..I could tell with the way she talked that she didn't really know how to answer me as to what she considered wrong with me and my colon. She said she wanted to discuss my case with the constipation specialist and then have a meeting with him and myself to decide what we should do about my colon. She mentioned colon surgery but is highly against removing the whole colon like the first colon surgeon suggested to me. It just didnt leave me feeling very confident. I really don't want to be experimental with my organs. I am nervous that we will meet and they are gonna come up with what they think they should do and then what if they are wrong...

I submitted my case to the Mayo Clinic in Minnesota. I really am at a loss right now on what to do anymore. I am starting to lose hope..
Helpful - 0
1128665 tn?1269273471
How frustrating; please don't lose hope. One thing you might want to question urogyn about when you finally get in to see her if she also questions that you have more than one issue going on is intussusception(and dig into, anything that might help shine light to get things balanced). This is a pretty uncommon scenario where the colon develops "fingers" that extend off of it and the poop can get stuck in there and can't get out. To get an idea of what it is like, hold the fingers of your hand together except the thumb, intuss is kind of like that thumb sticking out-dead end for poop. I'm still hopeful it is rectocele though. I would think between the 2 colon drs though if it was intuss they'd have caught it.

Also might consider submitting case info fo Cleveland Clinic, they are stop shelf as well. Can't hurt to get more medical opinions-as long as no one is talking surgery without knowing what they are addressing.

Sure hope things get figured out soon.
Sher
Helpful - 0
1704915 tn?1357601254
Thank you Sherrie.. you always make me feel better.. I was in tears when i got home on Weds..

I have an appointment with a urogynocologist that my step mom recommended to me instead of the one that the dr I just saw recommended to me.. I feel like that place is giving me the run around.. I can't get in until June 27th.. but I altleast have an appointment and am going to move forward with the rectocele and see what she says.

As far as intussusception would that show up in any of the tests that I have had done?
Helpful - 0
1128665 tn?1269273471
I would think the barium colon tests should show if there was intuss. Don't know  how obvious this is on pictures-might be a good idea to ask.

It's unfortunate you have to wait so long to see urogyn-long wait usually indicates a good dr though so hopefully you'll get some answers. I sure hope you get some answers soon!

Sher
Helpful - 0
1704915 tn?1357601254
Great news today.. the urogyno's nurse contacted me after I sent her my medical history recap letter. The Dr told her to get me in sooner by giving me one of the special cases appointments.. so I guess I am special. I get in now on May 9th!!!!!! Also the Mayo Clinic also contacted me. My next step is to send them all my medical record stuff and they will review my case.
Helpful - 0
1128665 tn?1269273471
This is GREAT NEWS!! Please keep me in the loop!
Sher
Helpful - 0
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