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

[ng1031]

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?

[ng1031]

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..

[sherrieP]

Just breath, try to stay calm. Once you have a definitive diagnosis & path of treatment it's easier to take things one step at a time. Not knowing what is to come is the hardest part. Please keep me in the loop, you'll be in my thoughts on Wednesday.
Sher

[ng1031]

I have been counting down the days to my appointment and now it is almost here!! Next Weds. the 11th!! I am nervous and anxious all at the same time.

[sherrieP]

Don't typically hear about weight loss related to POP surgery although going to a bland diet immediately b/4 and after surgery does help a tiny bit. Should help a bit with bloating since constipation s/b reduced. Keep in mind that it will take a bit for your colon to adjust after surgery so may not be regular right off the bat but should level pretty quickly with proper diet. Remember sugar is glue in intestines/colon so the more you eat, the more constipation you have. So hard to give it up though, we all love our brownies!
Sher

[ng1031]

Did anyone lose any weight after having their rectocele fixed? Or if not weight loss had reduced bloating from no longer being backed up. I pray that part goes away.

[ng1031]

Thank you.. that gives me a general idea. I will definitely bring it up to the surgeon when I meet with her on April 11th.