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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?
So had a special doctor visit after hours with some of the staff (gi specialist and colon surgeon) at a hospital I have been having all these tests done at. They talked to me about all the results and all that I have told them and they feel I have 2 issues going on
1.) Colonic inertia = constipation/slow transit
2.) SIBO/IBS
they told me that the only way to be sure if the large intestine is working is to do a temporary jpouch for about 4 - 6 weeks. Test the waters and see if I feel better without use of the large intestine. If I do then we know the large intestine is to blame and they can remove it. They told me that they would remove the jpouch and the large intestine and then connect my small intestine to my rectum.
Did anyone else go through this before having their large intestine removed. It means 2 surgeries for me.
1.) Colonic inertia = constipation/slow transit
2.) SIBO/IBS
they told me that the only way to be sure if the large intestine is working is to do a temporary jpouch for about 4 - 6 weeks. Test the waters and see if I feel better without use of the large intestine. If I do then we know the large intestine is to blame and they can remove it. They told me that they would remove the jpouch and the large intestine and then connect my small intestine to my rectum.
Did anyone else go through this before having their large intestine removed. It means 2 surgeries for me.
Is your physician a gastro? It gets very muddy with diagnosis when there are concerns beyond rectocele (which a urogynecologist should treat). Seems weird to me that you are being told to take so many meds to clear the colon prior to exam when one right item will empty you out. If this is a general practioner, be careful about surgery-this area needs to be addressed by a specialist. Check with your hospital to see if they offer any programs for those w/o insurance.
Sher
Sher
I am in the same boat. I am having the marker test done now. At day 5 I had 24/24 and they were scattered throughout the entire colon. Now he wants me to take 4 times the daily dose of medications like miralax, collace, and citrocell and have another x-ray in 3 days...which I don't understand why??? I also have an elongated colon 80% more than normal and a rectocele. I feel like the doctor is not wanting to do surgery because I don't have insurance. He keeps saying that if I have slow transit and rectocele then I would have to have 2 different surgeries at the same time, but he keeps acting like he is trying to find a reason why he doesn't need to do the colon part of the surgery... Is that what he is doing or is he being a good doctor. What is the reason for taking all of this medicine and doing another x-ray in three days. Is he trying to see if that medication works or is he trying to find a reason not to do the surgery
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