New User/Prolapsed Colon/PNE

[curliegirlie74]

In 2001 ~ I delivered my Son naturally 9 lbs. even 20 inches long and had a 4th degree laceration. Which my Doctor should have called a general surgeon and taken me into the or to repair but she sewed me up in the room and didn't give me a ultrasound at my 6 week checkup. Since that was my first and only baby I had no idea how severe my delivery was other then my Son Michael had Erbs palsy, fully collapsed left lung, partial collapsed right lung and heart problems. He is perfectly healthy now and did recover from all his injuries.

In early 2005 I began suffering w/ fecal incontinence, mucous incontinence, horrid low back pain to where I couldn't stand longer then 10 minutes without wanting to cry & couldn't sit very long either. The only time I felt some relief was to lay down and I was still in horrid pain from standing/sitting & stomach pain that came on all of a sudden out of no where.
Went and seen my GP who suggested I see a Gastroenterologist who did a colonoscopy, took out a few polyps and told me I had IBS and prescribed me Bentyl. I kept going back to him telling him my symptoms weren't getting any better and in fact were getting worse. He told me that I needed to accept that this was IBS and learn to live with it. I went to the ER and my GP numerous times and no one could figure out what was causing my horrible low back pain and fecal incontinence. I had x-rays, which determined I had disk deterioration but the pain shouldn't be to the extreme of what I was going through & I had a MRI which I had no abnormal findings.

In early 2007 I started noticing that my colon was protruding from my rectum and went back to the Gastroenterologist and found out my Doctor had left the practice and I wound up seeing his partner who said during a rectal exam that he felt something odd and wanted me to see a General Surgeon. The general surgeon determined I had a full rectal prolapse and suggested I go to Chicago and see a Colon/Rectal surgeon there.

I went to Chicago and seen a Colon/Rectal surgeon who did confirm I had a full prolapsed colon and told me I needed surgery to correct the problem. Through an ultrasound it was determined that I had a defect in my internal & external sphincter muscles and Anorectal Manometry which determined I had some injured nerves & muscles in my anus & a 2nd degree rectocele. I was told that because of the way my gynecologist handeled the birth of my Son is the reason I have all these medical problems.
I asked him if surgery would make my low back pain go away and he said he wasn't sure. I ended up having a perineal rectosigmoidectomy, where they removed 6 inches of my rectum. Through the next 2 years I still had constipation, diarrhea, low back pain (a lil better), stomach cramps, pain before and after a bm & fecal & mucous incontinence. It was suggested that I start biofeedback to see if I could have better results with my medical issues and I have to admit, biofeedback only made my back problems worse and my incontinence & abdominal pain stayed the same.

Through the next three years I tried to live with the chronic pain and all the other symptoms the best that I could through watching what I was eating, fiber, pain pills and a lot less activity. I ended up losing 80 pounds due to chronic pain and not being able to eat much from feeling nauseous from it.

In 2010 I noticed I had another prolapsed colon along with all the other symptoms listed above. I contacted the hospital where I had my 1st surgery and they told me my surgeon had left their hospital and assigned me their new surgeon. Upon my visit she did confirm I did have another prolapsed colon. She had to take a few weeks to discuss my case over with all the other surgeons as my case was more complex seeing how I just had a surgery 3 years prior and they didn't want to do another perineal rectosigmoidectomy because the results weren't good the first time around and they weren't sure they could do an abdominal surgery on me because they were worried about cutting the blood supply off to the colon.
She called me and told me that after much discussion I was a good candidate for a abdominal rectopexy. I went in and had my surgery in December 2010 where they removed 12 inches of my large intestine and secured my rectum to the tissue around my sacrum bone. I woke up and my prolapse was fixed, still had pain in my lower back and still have issues with fecal/mucous incontinence and stomach cramping.

In June 2011 I started noticing that the mucous incontinence was getting worse, still had fecal incontinence, horrible stomach cramps, still pain before & after a bm, headaches and now the low back pain was at it's worst then it had ever been. It hurts to sit, stand for very long, numbness, pins & needles, burning, stabbing pain, aching, painful intercourse & the urge to urinate all the time.
Called my colon surgeon and went back in to see her who said she's still at a lose for all I'm still going through. During a rectal exam she now said she thinks I have PNE/PN because when she touched that part of my internal pelvic area she was able to re-inact the same exact pain I feel on a daily basis. She now has me scheduled for a Sitz-Marker Study to see if my digestion is slow and after I do this study I am to schedule another appointment with her to discuss those results.

I had on my own decided to contact a urogynecologist to see if I had other organ prolapses I wasn't aware of. I went and seen him just last week and he said I had no other organ prolapses other then the rectocele. I told him that my colon doctor suspected I had PNE/PN but didn't schedule me for any testing and that my back pain was so severe and I actually started crying while I was talking to him because I just feel so helpless. He prescribed me Lyrica which I'm not in the process of trying to get it approved through my insurance company because it's not considered a "gateway" drug for nerve problems and they want me to start with Gabapentin for my treatment. So now I'm just waiting on the Doctor to call my insurance company to get that worked out.
He wants me to do a Electrodiagnostic Testing of the Pelvic Floor with the Rehabilitation Institute of Chicago to determine if I do indeed have PNE/PN. So tomorrow I will be calling there to set up an appointment.
Then he wants me to start PT for rectopexy & possible PNE/PN & more biofeedback. He then asked that I come back in 6-8 weeks to let him know if I have any pain relief from the treatments and to discuss my test results of the Electrodiagnostic testings.
Since both my Colon Surgeon & Urogynecologist work at the same hospital they have already talked and have decided to work together to work on my progress.

After suffering with all of this for over 6 years I'm just thankful that finally they are getting closer to giving me a diagnosis for all my medical troubles and working towards trying to solve them. Everyday is a complete challenge for me, I'm in chronic horrific pain everyday, hurts to sit, stand, walk very far, ride in a car, have a bm & sexual intercourse. It has affected my life in such negative ways, almost cost me my marriage in 2007 since going through a seperation and a lot of work on both sides we are finally in a much better place, my relationship with my 10 year old Son is strained because I can't do much of anything outside of the house that doesn't require laying down most of the time. My friendships have diminished as who wants to continue a friendship with someone who cant go out and do much of anything. I find myself extremely crabby most of the time because of the chronic pain and depression over the reality of "this is my life now". As of right now I'm taking Hydrocodone 7.5 mg. & Baclofen 10mg. which both don't do much for me other then make me sleepy & outta it and just dull the pain enough to tolerate it.

I used to be extremely healthy, outgoing, fun, had tons of friends, out every weekend, be the life of the party, happy all of the time to this person I don't even know anymore. I'm thankful that I'm having medical issues and my Son is completely healthy, God couldn't have given me a better Blessing then that. I just wish there was more information regarding all our medical conditions so we could have more help provided to us within the regions where we live. Upon reading the closest place for PN treatment is Minnesota from NW Indiana and to be fully honest we just don't have the money at this time to travel, stay there and seek medical help. I've been seeking treatments, testing, surgeries and therapy for the last 6 years with no relief. I feel so bad so much of the time that this burden falls on my Husband and he has to pay for all my medical bills seeing how I can no longer work due to the pain. And no one can relate to what your going through, the pain and symptoms and it's so embarrassing to tell people what's really wrong with you. Especially in my case with the fecal/mucous incontinence on top of it.

Just wondering if there's anyone else on this forum who also had rectal surgery with PNE/PN symptoms?

I'm very happy there are places we can all go to get questions, answers, others to relate talk with ~ Thank you HOPE for creating this site!!!