Subtotal Colectomy scheduled for Colonic Inertia - Your Story - IBS Self Help and Support Group Forums - IBSgroup.org
Advertisement

Jump to content


Photo
* * * * * 1 votes

Subtotal Colectomy scheduled for Colonic Inertia

colonic inertia constipation diarrhea abdominal pain abdominal bloating rectal prolapse resection rectopexy subtotal colectomy

  • Please log in to reply
229 replies to this topic

#1 Miss Beany

Miss Beany

    Regular Member

  • Members
  • PipPip
  • 55 posts
  • Country:United States

Posted 08 November 2013 - 04:56 PM

Advertisement

Hi Everyone,

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.

 

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.  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. 

 

 

A year ago, after this disgusting incident repeated itself, and after talking with a friend who was in medical school, I finally made an appointment with my primary care doctor.  He told me my symptoms were textbook complete rectal prolapse and told me I needed to see a surgeon.  After meeting with one surgeon I did not like out of Hahnemann Hospital, another surgeon in Freehold, NJ who I did like (but insurance canceled my surgery 2 days before), and finally my awesome Bryn Mawr surgeon, and after tons of tests, including defecogram, xrays, CT-scans, rectal exams, barium, surgery was scheduled for January 11, 2013.

 

I had my laproscopic resection rectopexy on January 11, 2013; however, all did not go well.  I was supposed to be in the hospital for 3 days; 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.  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.

 

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.

 

Around May 20, 2013, when attempting to go to the bathroom, I felt an all too familiar feeling...I had relapsed with rectal prolapse.  When I called my surgeon, He referred me to a surgeon out of the University of Pennsylvania.  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.  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. 

 

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.  About a month after surgery, I developed extremely painful and deep left-sided abdominal pains.  I could barely stand.  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 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. 

 

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.  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.

 

 

The cleanse failed and I was 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 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, 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, then 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. 

 

I met with the 2nd opinion Temple GI doctor on September 17, 2013.  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.  I went through the anal mamometry on September 23, 2013.  Awful and embarrassing test.  After I had met with this 2nd opinion doctor, I called my GI doctorafter which he felt it was definitely time to contact the surgeon and get him on board. 

I met with my 1st surgeon from Bryn Mawr on September 25, 2013.  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. 

 

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. 

 

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. 

 

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.

 

Thank you for your time.



#2 rmiller1985

rmiller1985

    Prolific Member

  • Members
  • PipPipPip
  • 262 posts

  • IBS Penpal
  • Country:United States

Posted 08 November 2013 - 05:45 PM

Hi Miss Beany,

 

I don't have any of the complicated problems you've described, I'm a simple IBS-D case.  And my problems are mostly resolved at this point, I've been on the Specific Carbohydrate Diet for five months today and I have had tremendous success.  I just want to say:

 

Damn.  I'm really sorry you're having to deal with all that.  I hope finding this friendly community will help at least a little.

 

Cheers,

Rich


Lifetime wonky gut

5 months SCD

http://omnivoreoncemore.blogspot.com

 


#3 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 08 November 2013 - 07:11 PM

Good luck to you, Miss Beany with your upcoming surgery.  you have been through so much. it sounds like you have a terrific surgeon and you'll be in good hands. i know many people have had good outcomes with a total colectomy

 
i have had chronic constipation primarily due to pelvic floor dysfunction since childhood ( 50 years). i had an emergency extended right colectomy this past summer.   i developed a cecal volvulous. my ascending colon twisted 360 degrees, started swelling and was about to perforate. hubby took me to ER where they performed an emergency extended right colectomy.  
 
the ER surgeon removed my ascending colon and half the transverse. he did consult with my gastro both prior to and during the surgery. based on my tests and past history my gastro advised him to remove most of my colon--a total colectomy-- since none of it works--lol--but the ER surgeon decided to be a bit more conservative and just remove the twisted, swelling, ischemic part which i do understand--his job as ER surgeon was to fix the problem that brought me to the ER and he did that admirably--probably saved my life.
 
but i still have to take laxatives to go now even though i only have half a colon.  the remaining colon is still slow transit and troublesome. i plan to see the surgeon again to see if he'll just remove the rest of it.
 
feel free to ask any questions about my surgery--although mine was emergency surgery  not elective so it was a bit of a different situation.  take care. wishing you all the best.

these are just my own thoughts. for expert medical advice please contact a health care professional.


#4 Miss Beany

Miss Beany

    Regular Member

  • Members
  • PipPip
  • 55 posts
  • Country:United States

Posted 11 November 2013 - 01:01 PM

Rich - I am so happy to hear things are moving in the right direction for you!  A  lot of people are not as lucky as you, so that is truly wonderful :).  Thank you for your kind note.  It has been awful, but at least I know there is a light at the end of the tunnel now. 



#5 Miss Beany

Miss Beany

    Regular Member

  • Members
  • PipPip
  • 55 posts
  • Country:United States

Posted 11 November 2013 - 01:04 PM

Annie - It is definitely reassuring to know many people have had good outcomes with having a colectomy.  It's a scary thing to know that it is happening, and pretty much in a month.  But at that the same time, it still feels weird and like it won't happen and I will just wake up out of this awful dream. 

 

It definitely sounds like you should have the remaining part of your colon removed - hopefully tehy will consider that.  I had my sigmoid colon removed in January with my first surgery, and that obviously did not do anything positive for me, did not fix the underlying colonic inertia nor the rectal prolapse.

 

How long were you in the hospital?  Did they do open or laparoscopic?

 

Hope you are feeling okay!



#6 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 11 November 2013 - 01:35 PM

mine was emergency surgery so it wasn't laparoscopic surgery. after the CT scan the ER surgeon decided to open me up completely to see just exactly what was going on.i had a six inch vertical  incision in the middle of my abdomen. now it's quite the dramatic scar--lol... 
 

i was in the hospital  for 16 days. the nurses and the surgeons told me the normal hospital stay for this kind of surgery is 5 to 7 days but my situation was different--far from "normal"-- probably because of the emergency nature--body under extreme stress etc-- plus my age--61--and the fact that i was/am quite underweight.  not well prepared for surgery at all.and i have mitochondrial disease.  after surgery my body just shut down--- couldn't eat, couldn't poop, developed severe edema, had to have the ng tube reinserted (not fun)  had to be put on TPN, lost ten pounds,  etc etc) i had a bmi of 15 when i finally left the hospital.

 

but please--i don't mean to scare you by telling you all this. as i said my situation was complicated.

 

thanks i'm feeling a bit better now but still want to go back to my surgeon to see about getting the rest removed.,

 

good luck to you! stay strong! wishing you all the best. yes you are right--there is a light at the end of the tunnel.smile.png


these are just my own thoughts. for expert medical advice please contact a health care professional.


#7 Miss Beany

Miss Beany

    Regular Member

  • Members
  • PipPip
  • 55 posts
  • Country:United States

Posted 11 November 2013 - 01:39 PM

Annie - Thanks for your quick reply! 

 

I too have the large 6 inch vertical scar from my open rectopexy in July.  I have another 4-5 inch horizontal scar below that wehre my resection rectopexy was done in January. 

 

My surgeon is anticipating complications with my surgery, particularly because of the complications that have arose before.  I weigh around 95-100, depending, am 28 and 5'0''.  My surgeon did say I was likely to lose more weight from this, but we did not talk too much about feeding tube (he said he hoped to avoid that) and the ng tube was possible if surgery was extremely complicated.  So that is something that I will have to wait until I wakeup to see I guess... huh.png . 

 

You haven't scared me at all - I completely expect to hear things like this, and prefer it really, so that I am ready for anything. 

 

Thank you so so much for opening up to me!  biggrin.png



#8 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 11 November 2013 - 01:48 PM

ps--have you found this board? the AGMD GI motility disorders support board? there are quite a few people who've had colectomies there.  here is one link--there are more posts as well. everyone is very helpful and supportive:

 

 

   http://www.inspire.c...your-colectomy/


these are just my own thoughts. for expert medical advice please contact a health care professional.


#9 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 11 November 2013 - 01:51 PM

just read your last post--you must have been posting when i was--lol...

 

you have already been through so much. i do hope and pray you have a successful surgery and a recovery as free from complications as possible!  


these are just my own thoughts. for expert medical advice please contact a health care professional.


#10 ksl2017

ksl2017

    Regular Member

  • Members
  • PipPip
  • 81 posts
  • Country:United States

Posted 15 November 2013 - 12:37 PM

Hi Miss Beany,

 

I can completely relate to your feeling of how physicians and medical staff respond when they see such a young, otherwise healthy looking female suffering from uncommon digestive disorders.  I am a young, 23 year old female myself and have had issues with IBS-C for the majority of my life.  It was manageable for most of my life until last March 2013 I came down with a terrible infection and ever since then my colon has been extremely slow.  I was in and out of the hospital several times within the past 9 months for just about every G.I. test (colonoscopy, small bowel follow through, endoscopy, pill capsule swallow test, blood tests, enemas, ER visits, etc.).  Similar to you, medical staff were confused about how something like this could happen to such a young, active female.  I used to work out every day and ate relatively healthy my whole life.  Doctors couldn't figure out what was wrong with me, until I had a sitz marker colon transit study test performed followed by an anal monometry.  I was recently diagnosed with slow transit constipation and am being referred to Cleveland Clinic in Ohio for a defocogram on November 19th and to meet with a surgeon about a total colectomy seeing as how i have been on numerous laxatives with no improvement in bowel habits.  I too am a recent graduate student in a school of pharmacy program.  As a new student to the program, it has been a difficult first semester dealing with the medical condition and trying to keep up with coursework.  I would really like to hear how your total colectomy goes and how you are feeling afterwards!  I'm sorry to hear about your struggles, but it is amazing to hear from other individuals who have gone through a similar situation.  Stay strong!

 

Kymberly 



#11 Miss Beany

Miss Beany

    Regular Member

  • Members
  • PipPip
  • 55 posts
  • Country:United States

Posted 19 November 2013 - 12:42 PM

Kymberly, thank you so much for sharing your story. I definitely understand all that you have been through - I have had all of those tests.  I keep questioning whether having this surgery is the right decision or not, but I know dealing with what I have been for the past year and really my whole life has got to stop.  Next week I have preadmission testing.  It is slowly sinking in that this is happening in 3 weeks...I will definitely keep everyone posted of my progress after surgery.  I know it has been so helpful for me to read other people's stories and I more than want to help and reassure others out there that there is hope and a light at the end of the tunnel.



#12 ksl2017

ksl2017

    Regular Member

  • Members
  • PipPip
  • 81 posts
  • Country:United States

Posted 22 November 2013 - 11:33 PM

Well after traveling to Cleveland Clinic in Ohio to see my surgeon, I too am going to be having the laproscopic total abdominal colectomy performed on December 20.  However, my surgeon advised on a temporary illeostomy before the full connection of the small intestine to the rectum to allow for optimal recovery and also because I am underweight and malnourished (not that I could help it of course my surgeon knew).  I will be having the second surgery in March for the full reconnection during my spring break of pharmacy school.  This year I will be spending Christmas in the hospital, but I agree that dealing with this condition has really taken a toll on my quality of life for almost 9 months now so I am ready for a change.  My surgeon has dealt with several cases of this condition and she has reassured me that this is the best option since there is no way of making the colon work again on its own.  In addition, she has told me that many of her patients are living happily and have much better qualities of life after having had the surgery.  I wish you luck and I'll be thinking of you once I get my surgery because it will be a week after yours! God bless smile.png



#13 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 24 November 2013 - 08:45 AM

ksl--best of luck to you with your upcoming surgery.  it sounds like you have a terrific surgeon.  it's tough spending Christmas in the hospital but it will be so worth it when it's over and you've recovered. i've read so many colectomy success stories. it truly is the light at the end of the tunnel.

 

keeping both you and miss beany in my prayers--God Bless!   smile.png    annie


these are just my own thoughts. for expert medical advice please contact a health care professional.


#14 ksl2017

ksl2017

    Regular Member

  • Members
  • PipPip
  • 81 posts
  • Country:United States

Posted 28 November 2013 - 04:01 PM

annie7-thank you very much! I truly believe that this is the light at the end of the tunnel as you said.  Its all about the quality of life and I feel that this is the best option.  I appreciate your prayers and I too shall post my experience and comments post-operation to try to answer any questions other individuals might have.  Happy Thanksgiving to everyone!



#15 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 12 December 2013 - 08:38 AM

good luck, Miss Beany on your surgery tomorrow!

wishing you success with the surgery and an uncomplicated recovery and the light at the end of the tunnel!

keeping you in my prayers and sending positive healing thoughts your way, annie


these are just my own thoughts. for expert medical advice please contact a health care professional.


#16 Miss Beany

Miss Beany

    Regular Member

  • Members
  • PipPip
  • 55 posts
  • Country:United States

Posted 12 December 2013 - 11:26 PM

Annie- thank you so much!!!  I am terrified...and my prep effects are still going, taking forever to clean out even though I started on time.  Guess that is thanks to colonic inertia.  It is surreal that this is the last night I will have a colon...i know my life is going to drastically change come tomorrow morning, and i am just hoping i am making the right decision.

 

Thank you so much for your kind thoughts and words - i will try to post once i am alert and aware.

 

Gina



#17 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 13 December 2013 - 05:41 AM

Hi Gina

 

oh yes i think you've made the right decision--you've been through such agony for such a very long time.  and i've learned inertia just gets worse with age--at least it sure has for me.

 

hope you got through the prep ok. and you're right--inertia makes all  that go slower too.  i never did get all my prep out for my colonoscopy last year. 

 

thinking of you today!!!  and sending positive healing thoughts and prayers!   annie.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#18 ksl2017

ksl2017

    Regular Member

  • Members
  • PipPip
  • 81 posts
  • Country:United States

Posted 16 December 2013 - 12:51 AM

Miss Beany,

 

I hope your surgery went well and I send my prayers to you as well.  I am finishing up my finals for my first semester in Pharmacy school and the time has gone by so quickly that I noticed you already had your surgery.  Mine is in five days on December 20th so it will be here in no time!  I hope you recover quickly and we will have to post our experiences for others to hear about!  I have heard lots of good results from other friends and family members who work in the medical field so I'm hoping it holds true.  We will have to see for ourselves of course, but once again I wish you a speedy recovery!

 

Kymberly


  • Miss Beany likes this

#19 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 16 December 2013 - 06:50 AM

Kymberly--wishing you all the best with your upcoming surgery. and oh yes i've read many success stories. you are on your way to a better life.  i will keep you in my thoughts and prayers--sending lots of positive healing thoughts your way.

 

and Miss Beany--been thinking about you and praying for you and sending lots of positive healing thoughts your way as well.  i do hope your surgery was a success and that you are getting better and stronger everyday.


these are just my own thoughts. for expert medical advice please contact a health care professional.


#20 annie7

annie7

    Community Manager

  • Community Managers
  • PipPipPipPip
  • 11146 posts
  • Country:United States

Posted 16 December 2013 - 07:32 AM

Kymberly  you mentioned you'd be getting a temporary ileostomy for a while..if you're interested, here is a really good support board for people with ostomies--temporary or otherwise. lots of very helpful, informative and supportive people--lots of tips and tricks for dealing with ostomies etc:

 

    https://www.inspire.com/groups/ostomy/


these are just my own thoughts. for expert medical advice please contact a health care professional.






Also tagged with one or more of these keywords: colonic inertia, constipation, diarrhea, abdominal pain, abdominal bloating, rectal prolapse, resection rectopexy, subtotal colectomy


Advertisement

About Us | Contact Us | Advertise With Us | Disclaimer | Terms of Service | Crisis Resources

Irritable Bowel Syndrome |  Inflammatory Bowel Disease |  Crohn's Disease |  Ulcerative Colitis |  Fibromyalgia |  GERD - Reflux Disease


©Copyright 1995-2016 IBS Self Help and Support Group All rights reserved




This website is certified by Health On the Net Foundation. Click to verify. We comply with the HONcode standard for trustworthy health information: verify here