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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?
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?
the nurse for the urogynocologist I will be seeing at University of Chicago told me she is also sending my medical files to a colon surgeon there that deals with constitpation and women's health. She is hoping to get her to review my records and report her findings and discuss them with the urogynocologist before my appt on May 9th.
Also Mayo Clinic called back.. I am on their waiting list to go to their gastro clinic as well. They said they are #1 in america for gastro issues so I have to be put on a wait list for an opening.
So hopefully in the mean time University of Chicago will be more help then Northwestern was for me.
Also Mayo Clinic called back.. I am on their waiting list to go to their gastro clinic as well. They said they are #1 in america for gastro issues so I have to be put on a wait list for an opening.
So hopefully in the mean time University of Chicago will be more help then Northwestern was for me.
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.
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
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
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?
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?
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
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
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