6 replies to this topic

[missbeany]

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[font="georgia;"]Hi Everyone,[/font]

 

[font="georgia;"]I am finally taking the advice of some of my friends to seek a support group online...my hope is that sharing my experience, especially in the last year, will serve as a way to let others know they are not alone, and to know of what some doctors have suggested for treatment of my colonic issues.  I did write a lot, but have categorized it so you can jump around if you are not interested in reading the novel I wrote inadvertently.[/font]

 

[font="georgia;"]*I will warn you, that some of the information I provide can get descriptive*[/font]

 

[font="georgia;"]Bathroom Issues & Discovering What It Was[/font]

[font="georgia;"]Ever since I can remember, I have had issues going to the bathroom.  Between straining, having difficulty evacuating, urgency and occasional accidents, to intense pain, bleeding, and extreme abdominal discomfort, to looking like I was pregnant from my abdomen being extremely swollen and bloated.  You name it, I experienced it.  From the time I was about 17 until 27, I suffered from severe rectal prolapse.  I had no idea what it was during that time frame.  All I know is that I had something that looked like a long penis sticking out of my butt each time I "tried" to go to the bathroom.  (the next part is pretty descriptive).  There had been more than a few occasions when I'm guessing a large part of my intestine came out of my body d/t my straining and literally dangled out of me, spewing into the toilet water.  When this happened, blood was everywhere.  The worst part?  I couldn't get the darn thing back in my body.  I know I should have gone to the hospital, but I was completely embarrassed and mortified by whatever this was.  I wanted to fix it on my own, didn't want anyone to see me like that...how would I even get to the hospital with this thing dangling out of me?!  Usually with the penis-like thing that came out, I could spend time either sucking it back in, or push it in with my hand...though that usually caused bleeding and pain.  When the severe spewage of whatever that was came out, however, I sat on the toilet for hours trying to get it back inside.  When all but about 8 inches remained, I ended up putting a pad on and going to bed.  Luckily, when I woke up, it was back in my body...even though I was in awful pain.  [/font]

 

[font="georgia;"]A year ago, after this disgusting incident repeated itself, and after talking with a friend who was in medical school, I confided in him some major issues I had been having with whatever this was coming out of my butt.  I told him I was bleeding often, having the feeling like I was passing glass and extreme pain and burning, and that occasionally it looked like my entire intestine was dangling out of me.  He told me I really needed to go to a doctor and get evaluated, and soon, especially because with that intestine dangling out of me, I could develop gangrene which could be deadly.  He did tell me that he thought it was rectal prolapse, and that it was easily solved with surgery.  So, I made an appointment with my primary care doctor for the next week.[/font]

 

[font="georgia;"]Primary Care Visit for Rectal Prolapse[/font]

[font="georgia;"]I was never a fan of going to doctors, and was also pretty embarrassed to even talk about what had been going on with me, especially as I avoided the issue for so long.  During the appointment, my doctor told me I needed to get this issue addressed soon.  He referred me to a surgeon he knew and with whom he had personal experience.  I called, but this particular doctor was not specialized in treating my issue.  The receptionist offered me another recommendation for a surgeon out of Hahnemann Hospital.  [/font]

 

[font="georgia;"]1^st Meeting w/ 1^st Colorectal Surgeon & Scheduling Rectopexy[/font]

[font="georgia;"]I met with the Hahnemann colorectal surgeon a total of three times, had gone through various tests such as a defocogram, and had scheduled surgery with him for December 21, 2012.  Up until this point, I had not even considered getting a second opinion, but I was not feeling very comfortable nor confident in this surgeon or the way he approached me.  I felt he looked down on me, did not take me seriously, and like I was more or less wasting his and my time as he spent very little time with me.  He also downplayed my symptoms because I had waited so long to get them addressed. [/font]

 

[font="georgia;"]2^nd Opinion from 2^nd Colorectal Surgeon & Scheduling Resection Rectopexy[/font]

[font="georgia;"]I finally sought a second opinion from a friend’s father who was a colorectal surgeon in Freehold, NJ.  I felt much more comfortable and confident in this surgeon.  He requested I had all of the tests the first surgeon wanted and bring them with me to the appointment so I did not have to put my body through anything else.  He seemed to take me seriously, broke down the procedure in a way I could understand, and did not make me feel I was wasting his time.  I scheduled surgery with him for December 28, 2012, and canceled the surgery with the Hahnemann surgeon.  On December 26, 2012 my surgeon called to inform me he could not perform the surgery, as my insurance company would not cover it.  How could the insurance company wait until two days before surgery was scheduled to cancel it?  After spending hours on the phone, moving from department to department within the insurance company, I got nowhere.  Regardless of any efforts, the insurance company would not cover services for this surgeon or hospital because they were out of network.  I was back to square one.  [/font]

 

[font="georgia;"]3^rd Opinion after Insurance Canceled Surgery & Scheduling Resection Rectopexy[/font]

[font="georgia;"]By this point I felt completely defeated.  Not only was I still experiencing pain, bleeding, the prolapse, and extreme discomfort pretty much all the time, I now was no further than I was when I first asked my primary doctor for help. Trust in your doctor, especially with this issue, was and still is of utmost importance to me; however, I knew I needed to take this as a learning experience and move forward.  I listened to another recommendation for a colorectal surgeon out of Bryn Mawr Hospital and set up an appointment with him.[/font]

 

[font="georgia;"]When I contacted the Bryn Mawr surgeon’s office, I explained that I had all of the tests and paperwork already done, and was pressed for time in getting this procedure done as I was 1) tired of being in pain and 2) did not want this to negatively impact my semester (I am in Graduate school).  When I met with this surgeon, I immediately felt at ease.  He was understanding, prompt, and compassionate toward all I had been through during this process.  He was going to perform the same procedure as the New Jersey surgeon and was able to get me into surgery January 11, 2013, which involved me only having to miss one week of classes.  Finally, things appeared to have worked out and I could get this issue resolved.[/font]

 

[font="georgia;"]1^st Surgery: Laparoscopic Resection Rectopexy 1/11/13[/font]

[font="georgia;"]I had my laproscopic resection rectopexy on January 11, 2013; however, all did not go well.  I was in the hospital for a week.  I was, as my surgeon said, “dogged” by awful complications, neurologic, and cardiac symptoms for months following this surgery.  My bladder stopped working after the urologist put in a stent to be safe with this surgery; had the catheter in and out no lie about 10+ times and attempts while in the hospital and I left the hospital with a catheter.  I continued to have bladder issues until April 2013.  I also started experiencing numbness in my arms, legs, and face; lost blocks of vision, sometimes for days at a time; and was having severe chest pain and shortness of breath.  I was hospitalized for fear of having a stroke due to neurologic and cardiac issues for a week in March.  After another round of tests, they discovered I had a bicuspid aortic valve (congenital, born with this, just found it by accident when doing repeat echocardiograms for symptoms), and now had complicated migraines (which I never had before prior to surgery).  Pretty much from January until May, I was dealing with symptoms off and on of all of the above issues, found myself in the ER a total of 3 times, and admitted to the hospital one of those times for a week.  Additionally, I was still having difficulty going to the bathroom, would not go, or would have explosive diarrhea.  [/font]

 

[font="georgia;"]Visits with Gastrointestinal Doctor[/font]

[font="georgia;"]My GI doctor from Bryn Mawr, a referral of my first surgeon from Bryn Mawr, started me on Linzess (290mg) and told me to pair that with Miralax, meanwhile I still was taking Senna (2-4 tablets daily), and if that still didn’t work, ducolax.  I was constantly uncomfortable and there seemed to be no real relief.  I definitely learned how to work through it as I had two full time jobs and graduate school.  But it was not, and still is not, easy.[/font]

 

[font="georgia;"]Return of Rectal Prolapse & Referral to University of Pennsylvania Hospital[/font]

[font="georgia;"]Around May 20, 2013, when attempting to go to the bathroom, I felt an all too familiar feeling.  I cried as I looked down into the bowl and again so the prolapse dangling out of my butt.  How could this happen?!  As if this was not bad enough, my abdomen puffed up huge like I was months pregnant, and I was in extreme discomfort.  I called my surgeon, told him about what happened.  He was very upset to hear this, but said there were likely some pelvic floor issues which really needed to be addressed and worked up, and that was not his specialty area.  He referred me to a surgeon out of the University of Pennsylvania.  I called and made an appointment immediately as I just wanted this fixed.[/font]

 

[font="georgia;"]I met with the surgeon 3 days after the prolapse reared its ugly head again.  I had to go through the embarrassing demonstrations of it all, and now had to go through repeat tests of Barium, x-ray, CT-scan w/ contrast, and another awful defocogram.  I rushed around to get all of these tests done, as I just wanted to be on my way to better days.  Insurance was a bit of an issue, as they did not understand why I needed to go through such tests if I had already had the surgery to fix the issue.  After all results were back in, there was a partial rectocele along with internal hemorrhoids and of course the rectal prolapse.  He scheduled surgery for June 21, 2013.[/font]

 

[font="georgia;"]Redo Open Rectopexy 6/21/13, Hospitalization 7/19/13, Rigid Proctosigmoidscopy 8/19/13[/font]

[font="georgia;"]I had an open rectopexy on June 21, 2013 at the Hospital of the University of Pennsylvania.  Had bladder complications yet again, and suffered from a severe migraine most of my time there.  I was in the hospital a week.  Recovery post hospital went well for the most part, except I was still having issues going to the bathroom.  About a month after surgery, when working at the bar, I developed extremely painful and deep left-sided abdominal pains.  I could barely stand.  I left work and called my surgeon’s emergency’s number.  They sent me to the hospital, at which I was admitted and stayed there 5 days.  I was in quarantine for a chunk of the time I was there, as they feared I had developed C-Diff and needed to wait until I 1) gave them stool to examine and test, and 2) the tests came back clear.  That was an awful experience.  Luckily that was not the issue.  They also feared I had a fistula due to gas escaping from my vagina anytime I had diarrhea or attempted a bowel movement.  After discharge, he sent me for a rigid proctosigmoidscopy to check for a fistula on August 19, 2013.  This came back negative.  [/font]

 

[font="georgia;"]Gastrointestinal Doctor Suspicions’ [/font]

[font="georgia;"]All the while this was going on, my GI doctor began wondering if there was a larger, underlying issue with my colon, particularly due to the irregularity of my bowels, recurrent prolapse, nausea, and constant abdominal pain.  After my proctosigmoidscopy, he performed his own rectal exam.  After this, he sat down with me and told me he wanted to try a test of his own to see if we could reset my colon to baseline again – basically I would have to do the awful whole big bottle of miralax paired with 64oz of Gatorade.  He said if this doesn’t work, and things return to my normal, we might want to consider sending me to Temple University for a full gastric emptying studying.  If that came back with what he suspected might be going on (colonic inertia) he would suggest we discuss the option of having a colectomy performed.  We would not discuss that until I went through these two things, but he said at this point, that might be the best option I have at relief.[/font]

 

[font="georgia;"]Temple University 4-Day Gastric Emptying Study & Results[/font]

[font="georgia;"]My body ended up doing its own colon cleanse and had me bleeding and entirely sick over the course of two days.  I felt like there was nothing left in me, though still took ducolax and some miralax to ensure it.  I started back on my linzess, miralax, senna concoction and was back to the usual abdominal pain, irregular bowels, seeing food particles, having huge masses being extremely difficult to pass, etc.  Back and forth, zero relief, but constant cycle.  I called my GI doctor, told him.  He basically said he did not feel the meds were working for me, but we needed to keep things moving regardless.  He contacted Temple University and got me signed up for the 4-day complete gut gastric emptying study.  I ate the bland and isotope-radioactive-drenched egg sandwich, did not take my medications or pain killers, refrained from alcohol and caffeine, and went back daily for scans.  A week later, before my first grad class of the semester and first day of my internship, my GI doctor called with the results.  The test showed that my stomach and small intestine work just fine (which is excellent news!) but my colon was significantly slowed and indicated global colonic inertia.  He said at this point, he wanted me to meet with his mentor at Temple for a second opinion before making an appointment with the surgeon, but said after that, he would contact my surgeon and get him on board for the colectomy as he did not feel there was any other feasible option to offer me true relief.  [/font]

 

[font="georgia;"]2^nd Opinion GI Doctor & Anal Mamometry[/font]

[font="georgia;"]I met with the 2^nd opinion Temple GI doctor on September 17, 2013.  He took down my entire history.  Asked if I had tried different medications, realizing I could not take the ones he offered up because of my constant state of nausea at baseline.  He asked if there was any relief from my medications now – I said no, it is just back and forth, pain and mess, no relief.  He seemed to concur with my GI doctor, but said it was important to go for an anal mamometry to make sure that my pelvic floor muscles functioned properly; if they would not, I would also need an ileostomy.  [/font]

 

[font="georgia;"]I went through the anal mamometry on September 23, 2013.  Awful and embarrassing test.  After I had met with this 2^nd opinion doctor, I called my GI doctor and told him what he had said.  My GI doctor felt it was definitely time to contact the surgeon and get him on board.  I requested he contact my original surgeon from the 1^st surgery at Bryn Mawr as I felt most comfortable with him.  He did so, and I met with him on September 25, 2013. [/font]

 

[font="georgia;"]Meeting w/ Colorectal Surgeon to Schedule Subtotal Colectomy[/font]

[font="georgia;"]My surgeon seemed to welcome me back and sincerely seemed to want to help in any way he could.  He did seem to feel bad I had to even consider this surgery in the first place.  He said it all made sense to him that the underlying and big issue was the colonic inertia, but that is not the first thing that doctors like him think about when a 28 year old, seemingly healthy, young lady walks into his office with a history of rectal prolapse.  Regardless, he was completely on board for the subtotal colectomy.  He would leave the rectum in place and remove the colon up to the small intestine and reconnect the small intestine to the rectum.  If, in a year, I am still miserable and having issues going to the bathroom, and pelvic floor physical therapy is getting us nowhere, I know I would need to get an ileostomy…but we are hoping that it does not come to that.  [/font]

 

[font="georgia;"]3^rd Major Surgery Scheduled – Laparoscopic versus Open Subtotal Colectomy[/font]

[font="georgia;"]My laparoscopic versus open subtotal colectomy is scheduled for Friday, December 13, 2013.  I am definitely scared, but at the same time, wanting it to be over and done with so I can move on with my recovery to hopefully sunnier days.  The misery I have dealt with for so long never remits, and even if I for a second feel like it could get better, my body shows me the complete opposite.  As of late, I have been having increasing amounts of rectal bleeding, abdominal pain, bouts with painful diarrhea, and a constant fear of the prolapse returning before this surgery.  My surgeon has been absolutely wonderful and has been answering all questions and concerns I have via email – which is completely reassuring to me of his investment in making this a success.  I know there will likely be complications, and I know things will seriously suck for a while after I have the surgery.  My baseline hospital stay is a week, according to my surgeon.  Last time, he said I would be in for about 3 days and I ended up staying in a week; hence, we are anticipating a week from the get-go, knowing it could be longer depending how my body deals with this surgery.[/font]

 

[font="georgia;"]I hope that someone out there will appreciate this novel I just wrote and know that they are by no means alone.  I often times feel completely alone…then I google and find support forums, such as this, and feel a bit better knowing there are other people out there.  [/font]

 

[font="georgia;"]I embrace any comments, support, questions, advice anyone who has gone through something similar, especially the subtotal colectomy.  I do apologize for the length of this all.[/font]

 

[font="georgia;"]Thank you for your time.[/font]

[MissMaggieJack]

Hi Missbeany,

I send you big kudos and thanks for being brave enough to bring this subject up.  I am on the west coast with much of the same story, a bit different, but the same grueling symptoms that don't go away.  I went through 5 colon surgeons before having surgery July 1.  So now it is just over the six months point.   I too now have the urologic problems, I am managing but not easily and the pain has subsided, but this is the about the worst thing ever.   I did not take pain meds after the surgery (same as you I think, laproscopic colon resection and rectopexy repair).

Mine is "tacked up" and the pain is awful, I can feel the staples sometimes, it is torture and not much will ever make it better but pain meds that cause constipation that created the whole problem to begin with, and gut motility issues.    

At times I have absolutely no nerve awareness when I am on the toilet - some sensations seems to come and go, so yes there are nerve impairments involved in my case.    

I would like to find out more about the colectomy that you are writing on.  

I am being evaluated for an iterstim sacral implant device for what is now significant urinary retention and the nerves not working with the colon.     If I can get this, hopefully it will help for a while, it is a pacemaker implant in my lower back that will be connected with the nerves that work with the sphincters.  The exercise is helping some but what happens when I cant because of severe arthritis/back damage.  

 

I have noticed a slight return of some function after forcing myself through exercise - sit ups, light core training which is difficult because I have had a lot of back trauma too.   Go figure, it is very complicated as it sounds like your condition is too.   It made sense that exercise would help whatever "inertia" if I could get my body moving, etc and the pelvic floor muscles working together.    It is really slow.  

 

I am stuck on laxatives, colace, milk of magnesia and a very carefully balanced diet of whatever works. I am also told I have a colon stricture, at one time it was no wider than my pinky - no wonder "######" couldn't get through.

so my rectal repair is still in place but extremely painful, lots of swelling and inflammation - it is only a question of time before the staples become undone.  Yes I was later diagnosed with the rectocele too and all the most humilitiating tests in the world. 

I am told my only alternative is a colostomy.

There is no predictable bowel management, nothing makes any sense, this is very embarrassing.  Because I have a cardiac pacemaker I cannot have an MRI so they cannot tell a whole lot of what else is going on.

The surgeon that did my July 1 surgery has now said not to come back, there is nothing he can do but is nearly admitting to some unavoidable damage.    I am not angry about that part I am angry that he is pushing me out the door and said don't come back and not to see the GI doctor there either. This is screwed up. 

 

I am trying to be optomistic but is is darn hard.   I am better off than a year ago, at least I can eat more and it goes through me, before I had lost over 40 lbs. Now I am stable and even gaining a little that I don't lke but oh well.     but the pain and ###### incontinence because I cannot feel it and the mess is often beyond what I can manage on my own.  

 

I am hoping other people will read this - this is a horrible problem, I am single, an attractive early 50 year old and I do not feel worthy of dating, etc because who in their right mind would date someone this messed up?    

I am a disabled veteran who is also still trying to go to school, stay productive. I have skills and things I think that have societal value.    I also keep myself busy with a small dogstting business/housesitting job.    

 

Well thank you for providing a safe forum to vent about the frustration and stress in this entire complicated issue.    

 

At times I wish they hadd just given me a colostomy when they did the repairs, the surgeon removed over a foot and a half of basically dead colon in addition to the rectopexy.     

 

I basically had consitpation since a young girl - I rememeber my mother giving me enemas when I was kindergarten age.   

 

I am managing with a really strict nearly vegan diet, high soluble fiber but low residue because of the colon stricture.     

 

I would really love to hear from anyone else who is legitimate that can identify with this.    Maybe we can find ways at least to manage and improve the quality of life.  This is not a pleasant way to live and very limited social life.    

 

Treasure the little things in life, the things that make you smile, that make you want to dance, the little things that many people take for granted.   

 

You are a young person with a big life left ahead,  stay positive even in your more upsettng days.   

 

 

[missbeany]

[font="georgia, serif;"]Hi MissMaggieJack![/font]

 

[font="georgia, serif;"]Thank you so much for your thoughtful response and for sharing your story with me!  I hope this email finds you doing well and not in too much pain or discomfort.[/font]

 

[font="georgia, serif;"]When I had my first resection rectopexy, my surgeon too "tacked up" the remaining portion of my rectum.  I had a lot of pain from this surgery, I think more so than I did with having my entire colon removed, oddly enough.  The pain actually got worse and was really bad come May, but that was also when I noticed the prolapse was back.  I continued to have pain after my 2nd surgery, but think it was more related to the open procedure to re-tack it up an resuture it to my inside wall, in addition to my colon just not working.  Some things that helped me with the pain were to use heating pads or ice it - it soothed it.  I also had seen my GI doctor who prescribed Bentyl for my abdominal pain, which was more likely due to the colonic inertia and chronic constipation.  [/font]

 

[font="georgia, serif;"]I am doing 100% better since I have had my total colectomy.  I only have my rectum left, which is connected by an ileo-anamosis to my small intestine.  My quality of life has drastically improved and I am ever-so-thankful.  It's amazing how much damage that colon did to my body, versus good!  I am basically re-training my digestive system and have had to get used to the frequency with which i now have to go to the bathroom, though still do get constipated at times, which my surgeon feels is likely due to my pelvic floor dysfunction.  I am still straining, which concerns me because i still fear i could relapse with rectal prolapse.  I also do not want to see my small intestine dangling out of me like the colon had before; that's just terrifying for me to even consider happening, but with straining, i know it is a possibility.  They do not have me only any form of supplement as of now to move things through - which is fine by me.  I think what constipates me is trying to add new things to my diet and/or not having enough water to flush my system.  Also, it takes time for your body to learn how to work.  Another factor is the pelvic floor muscles just do not coordinate or work perfectly, which makes trying to go to the bathroom a task in and of itself.  I have noticed increased sensation, but also decreased at times where i have accidents.  Quite embarrassing for someone at 28, and as a result, i am always wearing panty liners or pads.  [/font]

 

[font="georgia, serif;"]Have they tried you on pelvic floor physical therapy?  I have never heard of this implant you talk about, but i guess it would make sense to have to stimulate and retrain nerves if your nerves are not working?  [/font]

 

[font="georgia, serif;"]I definitely understand what it is like to be dependent on a bunch of different meds to even get something out of you; i was nauseous every single day of my life because of it and the meds made me sick too.  It's no way to live.  Have they done any gastric studies, colon transit studies, or sitz marker studies to see if you have any slow transit constipation going on there versus it being solely pelvic floor issues?  Just curious, though I know pelvic floor issues can make defecating a nightmare and be a really hard thing to fix.  As it is now, I am basically waiting to see what happens over the next six months to a year to see if my system can work itself out; if not, when i return to my surgeon, we will attempt pelvic floor physical therapy and discuss a permanent ilestomy.  The one GI doctor my GI doctor referred me to basically said he didn't think the colectomy would work for me, and that i would eventually need an ilestomy because of my pelvic floor dysfunction...hoping to prove him wrong though...but time will tell.  The unfortunate thing is if pelvic floor is messed up, the only true fix is ileostomy or colostomy because the muscles down there are just useless and there's no way to make them work if the treatments, like physical therapy, do not work .  At least that is my understanding of it all.  It's an awful and depressing reality.[/font]

 

[font="georgia, serif;"]I don't like what the surgeon did to you - that's awful!  Did he give you a reason, or just told you not to come back?  Make sure to get all of your records from them and if I were you, I would even have a lawyer look over them.  That just sounds fishy.  [/font]

 

[font="georgia, serif;"]I am 28, attractive, hardworking young woman who steered myself clear of the dating world especially in the past year.  I was in relationships before I knew what was going on with the rectal prolapse - i was with someone for over 3 years and dealt with that thing, but he never knew, i never told anyone until i went to the doctor over a year ago for it.  I know how embarrassing it is...i remember being stuck in his bathroom the one time for hours at night when he was sleeping because i had my intestine dangling out of my body.  Scary and embarrassing.  Then, once I had these surgeries, and once I knew i was going to need a colectomy, i remained even further away fromt eh dating world...until now.  This weekend, I am going on two dates.  I finally feel good about myself, even though I know i am by no means out of the woods.  I also feel so much better and want to do things, even if my energy levels are no where near the Gina-level.  My advice for you is to talk to your doctors, get second opinions, research surgeons online and look at patient reviews.  Doctors who are said to listen, have good bedside manner, and are compassionate, are particularly good with this, I find.  My surgeon was all of these things, plus more.  [/font]

 

[font="georgia, serif;"]Hang in there...let me know if you have more questions or anything.  I'm here for you and here to listen.  You are by no means alone, at all!  [/font]

 

[font="georgia, serif;"]Warmly,[/font]

[font="georgia, serif;"]Gina[/font]

[marleyma]

Hi,
Wow. You poor things. I recently just had a rectopexy and colon reduction about a week ago after having full rectal prolapse for 2 years. I'm 26 so young as well and I'm just kind of lost at this point. Recovery is going crappy. I constantly have right side pelvic pain which I can't relieve no matter how much medication I take. Still haven't had much of a bm and just feel shitty overall. I had to go back to surgeon yesterday due to symptoms and will be getting a CT scan today. I honestly got through about half your post and am now nervous! I hope you are feeling better these days and know you are definitely not alone. Best wishes.

[missbeany]

Hi Marleyma!

 

I hope you are doing better after a few weeks more of recovery from your resection and rextopexy. How are you feeling?

 

It is so easy to feel lost with colon issues at any age, but I think for girls our age it becomes an even larger issue. Body image is definitely so largely prominent in our society and I know with me having had to struggle with severe constipation and barely eating, but still looking full due to distention from fluid buildup, it's difficult to maintain self esteem and feel you are beautiful. For the longest time I felt disgusting having rectal prolapse; once I understood more about it and the medical side of it, it helped...but it still played games with how I felt as a 20 - something young lady.

 

I still struggle with body image perception especially as I am having incontinence problems after my colectomy. I've been going to pelvic floor physical therapy since March, but still have the accidents. My therapist told me she wasn't confident this would work, but we would try. We are discussing where to go from here at my apt next week. Between the incontinence and still continued straining to pass even liquid stool, I am a little worried about what she will say. My surgeon wants me to see him after I end PT and we would then discuss where to go from there. He is suggesting interstim, basically I would have some almost pacemaker implanted that would help me then control and stimulate my bowel and pelvic floor with a remote. I dunno about all that. ..again here I am, at 28, want to date and live a normal life. But i am guessing I am at a point where I need to accept that normal for me is not your typical normal for everyone else. It's frustrating especially after having gone through 3 surgeries and knowing this would involve another, granted less major, surgery. Trying to keep my head up but I just say this has been one hell of a battle to take on. Had I not had the continued support and understanding from my friends in my graduate program and best friends, I don't know as though I would be in the same okay state of mind that I am. Don't get me wrong, my family cares and is fairly supportive, but there is always the constant question of "why did this happen? This is your fault" that seems to always come up when yet another complication arises. It's frustrating trying to explain to my family thay some things like this just happen to people...and it is no one's fault. Just like my heart defect - that's no one's fault. Os me times genetics and genes that skip generations can create these huge obstacles and there are really no right or wrong answers.

 

Bsck to you - I too dealt with a lot of pelvic pain after surgery. A lot of that has to deal with the fact that a part of your colon was removed and then reattached. The pain is likely part of the healing, but also formation of scar tissue. And given this is a new connrction, things have tk try to pass through that new connrction and scar tissue which becomes painful. My pain eventually went away after my first surgery until I relapsed. It never really went away after my 2nd surgery until I had my colectomy because by that point my colon just shut down and stopped working all together pretty much. I'm hoping by this point that you are doing better and that the problem has improved or resolved all together.

 

Let me know if you have any more questions or if you want to talk. I know how frustrating this is and how disheartening it becomes after surgery when you do feel shitty. I'm sorry it took me so long to respond -I'm still having complications, some related to surgery others more to my complex migraines and heart. Trying to juggle that with work and grad school gets hard and I totally forgot to respond to this. I am sort for that.

 

Hugs,
Gina

[prolapserectum]

Hi All,

 

I have read above conversation, have any body thing now non surgical treatment of rectal prolapse are availble by herbal medicine (Ayurvedic Medicine). there are no need to go with pain of under surgical.

 

It is the Wonder & Specialty of this medicine that being Ayurvedic Medicine patient has to take only one dose per day verbally in the Morning Hours Empty Stomach. This medicine is the best option for those who do not want to go under surgery for prolapse rectum.

 

Thanks,

[ChrisB85]

Hi,

 

I believe I have some similar symptoms. I was diagnosed with pelvic floor dysfunction, rectal prolapse, and pelvic floor dysfunction. The doctor  is proposing a total colectomy, but he wants me to resolve the pelvic floor issues first, and was originally considering a resection with a rectopexy for the rectal prolapse. I wanted to know if you went forward with the total colectomy, and how you are handling it now. I would greatly appreciate your feedback on this. Thanks.