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?
If rectocele was confirmed, please see a urogynecologist-this is the specialist for pelvic organ prolapse. POP often gets misdiagnosed by other physicians, even gastros. Here's a link to an article I wrote that covers the basics-please read it to see how much of it fits.
Your symptoms are quite common with rectocele. Little helps until surgery is done, you can take pills, eat fiber until you feel like a farm animal, drink tons of water, nothing helps much-bottom line is stool gets stuck in the bulge and can't come out. With a colon like you describe, the problem is compounded.
I highly recommend you seek counsel with a urogyn to see what opinion comes from that direction. If you can't find one, let me know and I can send you info on how to dig for one in your area.
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.
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.
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.
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?? :(
Yes, rectocele and enterocele often go together. This is classic POP scenario with rectocele. I don't think either caused the other to occur, your colon was probably always the size it is and when the rectocele occured, the issues cropped up. The colon will not shrink, discuss with your urygyn if that needs to be addressed or if the rectocele repair will allow your colon to return to normal function. The long colon did not cause the rectocele. Most women have multiple causes of POP, vaginal childbirth is the leading cause, chronic constipation is both a cause and symptom. Multiple other causes, heavy lifting, running/jogging, genetics, chronic coughing.
I will definitely bring this up to her. I just was wondering if I had a slow transit/long colon etc that cause the constipation.. and cause me to strain.. that maybe that in turn caused the retrocele etc. My specialist seems to think the opposite. He thinks the retrocele is causing me to get backed up which in turn has cause my colon to stretch out etc.
Again thank you so much for your help!! You have been a god sent!
Not typically off of work unless you have surgery because this is then an on-going condition. Women usually figure out what works to help them have comfort/function at work, support garments at work and utilizing treatments to balance POP better.
Typically the heal curve post surgery is 6-12 weeks, depending on what you have done. In your scenario you can probably plan on the longer time frame. It varies from women to woman because we have different procedures done, different types of POP. This would be a good question to ask your urogyn.
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!
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.
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..
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.
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?
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.
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.
I was diagnosed with a rectocele and intussusception 18 months ago - and the test for this was a barium defecography - sometimes called a defecating proctogramme. I live in Australia and Sherrie has been an absolute God-send to me too. Some days I would be feeling so down - and reading her replies meant so much to me.
Hope you find the answers you are looking for in the not too distant future.
An yes, I'm familiar with leaky gut/yeast overgrowth. There's a great book on yeast overgrowth is by Dr Bruce Semon, can't remember the name, maybe Feast without Yeast. I hope both you and radar find the answers you need. Not knowing what is going is as difficult as dealing with symptoms. You are both in my thoughts!
I used this book to help my son get his Tourette's in balance and get him off nasty meds. The 1st book explains the theory plus has cookbook, 2nd book is all cookbook I believe. Helps hugely to go back to cooking from scratch, so much hidden yeast in packaged foods. I used to give my son a "treat day" once a week to so he could still enjoy a cheeseburger or pizza-that made it easier for him to stick to the diet.
Wow!! I am definitely gonna read more into it. I have been doing a lot more research as well on reducing the yeast and sugars in my diet. I am making small gradual changes right now. Baby steps.. but I am definitely making changes for sure. I also picked up Azo Yeast Pills to starting taking once a day with my other vitamins (I take a multi with probiotics and a digestive enzyme).
Did this work well for your son?
Sometimes I feel like I have ADHD or something of that nature. I get so off focus sometimes.. and my husband says I stress myself out.. but I can't help it. It's like my mind wonders from one thing to the next thing. And then lately for like the last year I say the wrong words.. like yesterday I was like.. "my sweater matches my coat" and my husband was like "did you mean your purse?" and I did.. I was looking right at it and still the word coat came out.
My son was on Nystatin antifungal rx (still takes them at 24). Dr. Semon's theory is autism, Tourettes, ADHD, and MS are all tied to yeast concerns. At it's base it makes sense that as a society we have shifted to eating more processed foods, our bodies react.
And you are right to shift in baby steps, sometimes taking this kind of shift on full bore all at once makes it un-doable and we fall off the wagon.
The Nystatin/diet worked great for my son-the only time he has flares is when he is hugely stressed.
That’s interesting cause I am actually prescribed the Nystatin Cream. I have it incase I need it because I am allergic to Vagisil and Monistat. I am going to have a serious talk with the urogynocologist about all of this as well as my birth control. If that is causing a lot of my issues as well (which all the doctors swear its not).. then it my be time to make a decision about alternate methods of birth control with my husband. He has already agreed to do a vasectomy if needed as we both don’t want children.
well I saw the urogynocologist and she believes the rectocele is not the blame for all my digestive issues. She believes its not even serious enough to have surgery on and that unless it gets worse I am just to leave it as is. My next step is getting a glucose hydrogen breath test to see if I have a fructose malabsorption due to the slight change I am seeing now that I am reducing sugars and white flour in my diet.
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
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.
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
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.
I got into the Mayo Clinic in MN and finally am getting answers. I had a slow transit study that was a 48 hour one as well as an EKG more blood work and a colonic manometry test. I have a very long, verry loopy slow transit colon. My pacemaker cells in my right side of my colon are dead or dieing off and it is causing me to back up all the way to my small intestine. IBS and SIBO are no longer even diagnosed for me as the symptoms of those happen in patients who have slow transit etc. I was on Resolor for one month and that did not work. I am now setting up my surgery! The surgery I will be having is called laparoscopic colectomy with ileorectal anastomosis and I will not need a colostomy bag. My surgery will also take place at Mayo Clinic. Another 7 hour drive from home but well worth it! FINALLY getting answers!!!
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