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]

Thank you for all of this info.

I got my paper copy of my results in today to take with me to my next appt

They say.... 4x3 cm anterior rectocele which does not completely empty Excessive pelvic floor descent with evacuation and extrinsic compression of proximal rectum..possibly to an enterocele

Does that make sense to you???

My concern is did this cause the issues with my colon or was it the other way around?? Also is it possible for my colon to shrink down again once this is fixed or will I also need acolon resectioning on top of it to prevent getting this again??  :(

[sherrieP]

I had surgery for 3 of the 5 types of POP, it was all fixed with one surgery. recovery varies from woman to woman (depending on type(s) of POP and degree of severity), in general 6-12 weeks. This is pretty intricate surgery and it is important to take necessary time to heal so the surgery "sticks". Makes no sense time/money/pain wise to have to repeat surgery because you became active too soon. Usually about a week on the couch (overnight in hospital) but 1st 2 weeks are pretty inactive then gradually increasing activity.

Many women are embarrassed or depressed with POP symtoms, don't feel alone. What is important is knowing for sure what is wrong so you can go forward.

UTIs are common with cystocele (bladder), often not all the urine comes out and that can cause UTI. Yeast infections can occur too but don't hear about them as often (try reducing sugar and eating more yogurt or taking acidopholus capsules, that usually helps). Don't usually see rashes at your age, that is more of a menopausal women's thing with reduction in hormone levels and tissue atrophy.

The reason it is common in menopausal women is because when estrogen is reduced, all of our tissues (muscle) get weaker including the pc muscle which is the support structure for organs in the pelvic cavity. Should have nothing to do with birth control pills but that may be a contributing factor for yeast infections.

I'm going to send you a PM (private message) with some additional info.

Sher

[ng1031]

another thing.. it says during menapause you can get this cause of hormones? What about hormones and birth control? Would birth control cause this?

[ng1031]

Wow your article is spot on and makes me feel less alone. Ever since I have been diagnosed I have been happy they know what is wrong after 6 years of and a million tests and 5 doctors later....but sortof depressed and embarrassed by it. Making me feel like what did I do that caused this etc. And now when I do go to the bathroom or have sex I am nervous cause I know in my head what is going on with my body and it sortof freaks me out.

Do people with POP also have more UTI's, yeast infections, rashes etc?

Also is this something a regular gynocologist could see during my annual routine visit? Or only through this defecography I had.

[ng1031]

Thank you soo very much. I am going to read your article right now.

The surgeon that my specialist wants me to see is a urogynecologist so I am glad to hear that means I am headed in the right direction.

Like you said.. I have tried everything and nothing is helping so I pray surgery will be my answer and I can start feeling normal again.

Have you had this surgery? How was the recovery?  

[sherrieP]

Also, your youth may have something to do with why no one has checked more deeply into POP, often women in your age pocket are blown off when it comes to rectocele because it is assumed this is an older woman's condition-it is not, I speak with young women all the time with rectocele. Vaginal childbirth is the leading cause but there are many other causes as well. Good luck, I hope you get some answers soon.
Sher